$5,000-$7,500
Boyd Collar Nolen & Tuggle Mr. David Cohen Mr. and Mrs. Richard W. Courts IV Hublot Mr. and Mrs. Donald Kessler Mr. and Mrs. Keith Hyland Medical Neurogenetics Mr. and Mrs. John Robinson Mr. and Mrs. Meade Stone Drs. John and Karen Shoffner Mr. and Mrs. Harold Wyatt Mr. and Mrs. Frank Wren
$3,000-$4,999
Mr. and Mrs. Neville Isdell Mr. and Mrs. Todd Lacey Mr. and Mrs. John Lloyd Ms. Maurie Mintz and Mr. Markus Pokert Mr. and Mrs. Patrick Wulf
$2,000-$2,999
Mr. and Mrs. Rusty Coleman Mr. and Mrs. Clay Courts Mr. and Mrs. Ben Garren Jr. Mr. and Mrs. David Green The Hudson Family Foundation Isdell Family Foundation Mr. and Mrs. Merrick Olives Mr. and Mrs. Bill Sheppard Mr. and Mrs. Ricks Tucker Ms. Laura Stanley and Mr. Michael Van de Planque Mr. and Mrs. W. Dan Wright Mr. and Mrs. Rusty Coleman
$1,000 - $1,999
Mr. and Mrs. Joey Albert Arizona Community Foundation Mr. and Mrs. Neal Aronson Mr. and Mrs. Manny Arora The Atlanta Braves Atlas Copco Compressors LLC Mr. and Mrs. Matt Caine Mr. and Mrs. Jason Norton EQUIFAX Mr. and Mrs. Jim Frank Mr. and Mrs. Bob Green Mr. and Mrs. David P. Higgins Mr. and Mrs. Harold Hudson IntercontinentalExchange, Inc.
$500-$999
Mr. and Mrs. Andrew Abernathy Mr. and Mrs. Tim Adams Alpha Oxy-Med American Textile Company Mr. and Mrs. Manny Arora Balch Companies Mr. and Mrs. Zan Banks Mr. and Mrs. Matthew Bartelt Mr. Richard Beebe, Jr. Mr. and Mrs. John Bencich Ms. Paula Bevington Mr. Dick Boger Mr. and Mrs. Bill Bollwerk Mr. Gabe Bove Mr. and Mrs. Pat Brumbaugh Ms. Louise Cherry Chick-fil-A Mr. and Mrs. Rodes Cole Mr. and Mrs. Brian Collins Cota Construction Mr. and Mrs. Aaron Danzig Drs. Whitely and Dasilva Mr. and Mrs. Jim Defurio Mr. and Mrs. David Dombrowski Mr. and Mrs. Carl Drake Mr. and Mrs. David Edmiston Mrs. Laura Fritts Mr. and Mrs. Jeffrey Fisher Mr. and Mrs. Tony Gaines Ms. Emily Giffin & Mr. Buddy Blaha Mr. and Mrs. David Gracey Ms. Alison Stuebe and Mr. Geoffrey Green Mr. and Mrs. Richard Griggs Mr. and Mrs. Greg Grizzle Ms. Julia Haesemeyer Mr. and Mrs. Tom Hough Ms. Patricia Hurter James-Bates-Brannan-Groover-LLP Mr. and Mrs. Keith Jernigan Mr. and Mrs. Mark Kauffman Ms. Dee Krueage Mr. and Mrs. Jim Landers Mr. and Mrs. Ben LaPointe
LDJ Enterprise, Inc dba ServPro of Newington Ms. Patricia LeFebvre The Little Bake Shoppe Mr. and Mrs. Wade McKenzie Mr. and Mrs. John Mori Mr. and Mrs. Bruce Moskowitz Mr. and Mrs. Douglas Nichols Mr. and Mrs. John Norton Nutmeg Restaurant - Krini LLC Mr. and Mrs. Michael Ouweleen Mr. and Mrs. Timothy Payne Peerless Tool & Machine Company, Inc Petit Family Foundation Mr. and Mrs. Frank Reese Renn Wealth Management Mr. and Mrs. Jake Ring Mr. and Mrs. Marvin Rosenberg SAKS Incorporated Ms. Molly Smalley and Mr. Brian Scales Mr. Roger Shaffer Mr. and Mrs. Blayne Shelton Mr. and Mrs. Kenny Solomon Southern Auto Sales, Inc Mr. and Mrs. David Stallings Ms. Karen Klein and Mr. David Stearns Mr. and Mrs. Joe Stewart Mr. and Mrs. Randall Street Suntrust Bank Mr. and Mrs. Hugh Tarbutton Jr. Ms. Tracey Tiska and Mr. Peter Tomlinson TRICK 3D Mr. and Mrs. Jonathan Tuggle Mr. and Mrs. Ed Urquhart Mr. and Mrs. Jeff Ussery Bret Watts Automotive Mr. and Mrs. Scott Yates *Thank you to all of our donors. Any and all levels of support makes our Hope Fly. Please let us know if we have inadvertently had an error in the above list: info@mitochondrialdiseases.org
THE FACES OF MITOCHONDRIAL DISEASE
J.B. McGee’s Family For J. B. McGee’s family and many like it, things from the outside may seem perfectly fine and normal, but in reality, the day-to-day means daunting medications, extreme medical expenses, fatigue for the whole family, feeding tubes, ports, and CPAP’s, all of which are required to manage the entire family’s mitochondrial disease.
The
FireFlyer 2013 Annual Report
J.B. McGee’s first child, Noah, was born in 2005, seemingly healthy. In 2006, after a year of constant infections, diagnosis of sleep apnea, and surgery to take out his adenoids, Noah needed to have another surgery called a Nissen Fundoplication and a feeding tube inserted to keep him from aspirating his reflux into his lungs. Within two weeks of that surgery, J.B. and her husband learned they were expecting Jonah.
Dear FMM supporters: On behalf of our Board of Directors and everyone worldwide affected by mitochondrial disease and the many related diseases, I’d like to thank you for your continued support of the Foundation for Mitochondrial Medicine. 2013 was a year filled with many new fruitful opportunities, particularly in our efforts to fund cures and fuel connections. FMM is now poised for expansion of our initiatives, and we look forward to exciting developments in this coming year.
Soon after, J.B. and Chad realized that Jonah was following in his brother’s footsteps. Within six months, Jonah was also diagnosed with the same motility issues as Noah. Jonah also had sleep apnea and periodic limb movement disorder along with frequent wheezing and infections. He had numerous hospitalizations and by one year of age had already needed over twenty antibiotics. At last, a trip to see a new doctor for the boys led to a referral to see Dr. John Shoffner and the investigation into a genetic condition called Mitochondrial Disease set full sail.
2013 Hope Flies Catch the Cure Pictured from left to right: Danielle & We are extremely pleased to announce the Jim Poppins, Laura Stanley, Dr. John Shoffner, Laura & David Green recent addition of new Board of Directors and Advisory Committee members and look forward to their contributions to FMM’s growth and success in 2014 and beyond: Fred Blankenship WSB-TV News Anchor Dick Boger Lex-Tex International Anthony Soscia Atlantic Pharmaceuticals and Advisory Committee members include: Bob Baxter, Korn/Ferry International; Nate Bennett, Georgia State University; Paula Bevington, Bevington Advisors; Brian Dorrien, Venadar; Rich Fabritius, Brunner Advertising; and Russ Lipari, Validus Group.
Muscle biopsies and genetic testing first for Noah, then for Jonah and later for mother and father, J.B. and Chad. For J.B. and Chad, diagnoses of mitochondrial disease became the explanations for chronic lifelong symptoms that never seemed to have a single point of origin. Throughout J.B.’s life, she has suffered from fatigue, overheating, frequent dehydration and infections. During her freshman year of college, J.B. was forced to take a medical leave for symptoms, now known to be related to mitochondrial disease. Chad has had a ten year history of fatigue, pain, and GI symptoms all of which stem from mitochondrial disease.
We are very proud to announce our partnership with the Alzheimer’s Drug Discovery Foundation to co-fund innovative translational research for mitochondrial dysfunction. In 2014 and beyond, we look to continue our partnership with the ADDF as well as expand our collaborative efforts with other organizations also dedicated to funding cures for diseases with mitochondrial dysfunction as a core element.
Noah was diagnosed with gastrointestinal dysmotility, and despite the previous surgery, his sleep apnea persisted. He also had developmental delays, and J.B. and husband, Chad were positive that there had to be something more to these symptoms.
J.B. McGee has channeled her energies into writing and in 2012 published her first novel. Your support of her work helps raise awareness for mitochondrial disease and fuel hopes for treatments and eventual cures. To learn more and donate in honor of J.B. McGee and her family, visit www.hopeflies.org.
In September 2014, we will celebrate the 5th anniversary of our first Hope Flies event, our Atlanta Hope Flies Catch the Cure, which has raised more than $850,000 since its inception. As we prepare for the year ahead, we have our sights set on continued growth, expansion and partnerships. We thank you for your continued support of our organization through your dedication to fundraising, attending and organizing events, volunteering, connecting us with new partners, and increasing awareness to help FMM lead the way to treatments and cures.
{ Did You Know? }
Mitochondrial disease is more common than childhood cancer.
Upcoming Events
Most sincerely,
Check out www.hopeflies.org for all of the details Hope Flies For Friends
Hope Flies Stars for Audrey
Partners for the Cures
Hope Flies Catch the Cure
Hope Flies Walk for Abby
FMM Scientific Summit
Color Run - Miles in Memory of Michaela
Firefly Run
Hope Flies with the Braves
Interested in supporting one of our events? Contact us at info@mitochondrialdiseases.org.
February 20, 2014 Ponte Verde Beach, FL March 6 & 27, 2014 Atlanta, GA/Chattanooga, TN April 26, 2014 Broad Brook, CT June 2, 2014 Portland, ME
July 26, 2014 Turner Field, Atlanta, GA
September 13, 2014 Greenwood, IN September 19, 2014 Atlanta, GA September 20, 2014 Atlanta, GA October, 2014 Atlanta, GA
Phone 1.888.448.1495 Web mitochondrialdiseases.org
Future Digital 1111 Foundation Stealth Peptides Incorporated Mary R. Gilbert Trust
Mr. and Mrs. Mark Kessler Mr. and Mrs. Larry Klein Mr. and Mrs. Chris Martin Neiman Marcus Mr. and Mrs. Erwin Reid Mr. Griff Stanley Patricia Bowman Terwilliger Family Foundation Charitable Trust Mrs. Pam Perkowski and Mr. Mark van Weegen Webster Bank Mr. and Mrs. Iwan Williams
5424 Glenridge Drive NE Atlanta, GA 30342
$10,000 and above
Non-Profit Org. U.S. Postage Paid Atlanta, GA Permit 2563
Major Donors
Executive Director Foundation for Mitochondrial Medicine
Board of Directors Fred Blankenship Dick Boger David Green Keith Hyland, Ph.D. Steve Rothschild
Dr. John Shoffner, M.D. Anthony Soscia Frank Wren Terri Wren
Laura Stanley Executive Director Morgan Smith Operations Manager
$5,000-$7,500
Boyd Collar Nolen & Tuggle Mr. David Cohen Mr. and Mrs. Richard W. Courts IV Hublot Mr. and Mrs. Donald Kessler Mr. and Mrs. Keith Hyland Medical Neurogenetics Mr. and Mrs. John Robinson Mr. and Mrs. Meade Stone Drs. John and Karen Shoffner Mr. and Mrs. Harold Wyatt Mr. and Mrs. Frank Wren
$3,000-$4,999
Mr. and Mrs. Neville Isdell Mr. and Mrs. Todd Lacey Mr. and Mrs. John Lloyd Ms. Maurie Mintz and Mr. Markus Pokert Mr. and Mrs. Patrick Wulf
$2,000-$2,999
Mr. and Mrs. Rusty Coleman Mr. and Mrs. Clay Courts Mr. and Mrs. Ben Garren Jr. Mr. and Mrs. David Green The Hudson Family Foundation Isdell Family Foundation Mr. and Mrs. Merrick Olives Mr. and Mrs. Bill Sheppard Mr. and Mrs. Ricks Tucker Ms. Laura Stanley and Mr. Michael Van de Planque Mr. and Mrs. W. Dan Wright Mr. and Mrs. Rusty Coleman
$1,000 - $1,999
Mr. and Mrs. Joey Albert Arizona Community Foundation Mr. and Mrs. Neal Aronson Mr. and Mrs. Manny Arora The Atlanta Braves Atlas Copco Compressors LLC Mr. and Mrs. Matt Caine Mr. and Mrs. Jason Norton EQUIFAX Mr. and Mrs. Jim Frank Mr. and Mrs. Bob Green Mr. and Mrs. David P. Higgins Mr. and Mrs. Harold Hudson IntercontinentalExchange, Inc.
$500-$999
Mr. and Mrs. Andrew Abernathy Mr. and Mrs. Tim Adams Alpha Oxy-Med American Textile Company Mr. and Mrs. Manny Arora Balch Companies Mr. and Mrs. Zan Banks Mr. and Mrs. Matthew Bartelt Mr. Richard Beebe, Jr. Mr. and Mrs. John Bencich Ms. Paula Bevington Mr. Dick Boger Mr. and Mrs. Bill Bollwerk Mr. Gabe Bove Mr. and Mrs. Pat Brumbaugh Ms. Louise Cherry Chick-fil-A Mr. and Mrs. Rodes Cole Mr. and Mrs. Brian Collins Cota Construction Mr. and Mrs. Aaron Danzig Drs. Whitely and Dasilva Mr. and Mrs. Jim Defurio Mr. and Mrs. David Dombrowski Mr. and Mrs. Carl Drake Mr. and Mrs. David Edmiston Mrs. Laura Fritts Mr. and Mrs. Jeffrey Fisher Mr. and Mrs. Tony Gaines Ms. Emily Giffin & Mr. Buddy Blaha Mr. and Mrs. David Gracey Ms. Alison Stuebe and Mr. Geoffrey Green Mr. and Mrs. Richard Griggs Mr. and Mrs. Greg Grizzle Ms. Julia Haesemeyer Mr. and Mrs. Tom Hough Ms. Patricia Hurter James-Bates-Brannan-Groover-LLP Mr. and Mrs. Keith Jernigan Mr. and Mrs. Mark Kauffman Ms. Dee Krueage Mr. and Mrs. Jim Landers Mr. and Mrs. Ben LaPointe
LDJ Enterprise, Inc dba ServPro of Newington Ms. Patricia LeFebvre The Little Bake Shoppe Mr. and Mrs. Wade McKenzie Mr. and Mrs. John Mori Mr. and Mrs. Bruce Moskowitz Mr. and Mrs. Douglas Nichols Mr. and Mrs. John Norton Nutmeg Restaurant - Krini LLC Mr. and Mrs. Michael Ouweleen Mr. and Mrs. Timothy Payne Peerless Tool & Machine Company, Inc Petit Family Foundation Mr. and Mrs. Frank Reese Renn Wealth Management Mr. and Mrs. Jake Ring Mr. and Mrs. Marvin Rosenberg SAKS Incorporated Ms. Molly Smalley and Mr. Brian Scales Mr. Roger Shaffer Mr. and Mrs. Blayne Shelton Mr. and Mrs. Kenny Solomon Southern Auto Sales, Inc Mr. and Mrs. David Stallings Ms. Karen Klein and Mr. David Stearns Mr. and Mrs. Joe Stewart Mr. and Mrs. Randall Street Suntrust Bank Mr. and Mrs. Hugh Tarbutton Jr. Ms. Tracey Tiska and Mr. Peter Tomlinson TRICK 3D Mr. and Mrs. Jonathan Tuggle Mr. and Mrs. Ed Urquhart Mr. and Mrs. Jeff Ussery Bret Watts Automotive Mr. and Mrs. Scott Yates *Thank you to all of our donors. Any and all levels of support makes our Hope Fly. Please let us know if we have inadvertently had an error in the above list: info@mitochondrialdiseases.org
THE FACES OF MITOCHONDRIAL DISEASE
J.B. McGee’s Family For J. B. McGee’s family and many like it, things from the outside may seem perfectly fine and normal, but in reality, the day-to-day means daunting medications, extreme medical expenses, fatigue for the whole family, feeding tubes, ports, and CPAP’s, all of which are required to manage the entire family’s mitochondrial disease.
The
FireFlyer 2013 Annual Report
J.B. McGee’s first child, Noah, was born in 2005, seemingly healthy. In 2006, after a year of constant infections, diagnosis of sleep apnea, and surgery to take out his adenoids, Noah needed to have another surgery called a Nissen Fundoplication and a feeding tube inserted to keep him from aspirating his reflux into his lungs. Within two weeks of that surgery, J.B. and her husband learned they were expecting Jonah.
Dear FMM supporters: On behalf of our Board of Directors and everyone worldwide affected by mitochondrial disease and the many related diseases, I’d like to thank you for your continued support of the Foundation for Mitochondrial Medicine. 2013 was a year filled with many new fruitful opportunities, particularly in our efforts to fund cures and fuel connections. FMM is now poised for expansion of our initiatives, and we look forward to exciting developments in this coming year.
Soon after, J.B. and Chad realized that Jonah was following in his brother’s footsteps. Within six months, Jonah was also diagnosed with the same motility issues as Noah. Jonah also had sleep apnea and periodic limb movement disorder along with frequent wheezing and infections. He had numerous hospitalizations and by one year of age had already needed over twenty antibiotics. At last, a trip to see a new doctor for the boys led to a referral to see Dr. John Shoffner and the investigation into a genetic condition called Mitochondrial Disease set full sail.
2013 Hope Flies Catch the Cure Pictured from left to right: Danielle & We are extremely pleased to announce the Jim Poppins, Laura Stanley, Dr. John Shoffner, Laura & David Green recent addition of new Board of Directors and Advisory Committee members and look forward to their contributions to FMM’s growth and success in 2014 and beyond: Fred Blankenship WSB-TV News Anchor Dick Boger Lex-Tex International Anthony Soscia Atlantic Pharmaceuticals and Advisory Committee members include: Bob Baxter, Korn/Ferry International; Nate Bennett, Georgia State University; Paula Bevington, Bevington Advisors; Brian Dorrien, Venadar; Rich Fabritius, Brunner Advertising; and Russ Lipari, Validus Group.
Muscle biopsies and genetic testing first for Noah, then for Jonah and later for mother and father, J.B. and Chad. For J.B. and Chad, diagnoses of mitochondrial disease became the explanations for chronic lifelong symptoms that never seemed to have a single point of origin. Throughout J.B.’s life, she has suffered from fatigue, overheating, frequent dehydration and infections. During her freshman year of college, J.B. was forced to take a medical leave for symptoms, now known to be related to mitochondrial disease. Chad has had a ten year history of fatigue, pain, and GI symptoms all of which stem from mitochondrial disease.
We are very proud to announce our partnership with the Alzheimer’s Drug Discovery Foundation to co-fund innovative translational research for mitochondrial dysfunction. In 2014 and beyond, we look to continue our partnership with the ADDF as well as expand our collaborative efforts with other organizations also dedicated to funding cures for diseases with mitochondrial dysfunction as a core element.
Noah was diagnosed with gastrointestinal dysmotility, and despite the previous surgery, his sleep apnea persisted. He also had developmental delays, and J.B. and husband, Chad were positive that there had to be something more to these symptoms.
J.B. McGee has channeled her energies into writing and in 2012 published her first novel. Your support of her work helps raise awareness for mitochondrial disease and fuel hopes for treatments and eventual cures. To learn more and donate in honor of J.B. McGee and her family, visit www.hopeflies.org.
In September 2014, we will celebrate the 5th anniversary of our first Hope Flies event, our Atlanta Hope Flies Catch the Cure, which has raised more than $850,000 since its inception. As we prepare for the year ahead, we have our sights set on continued growth, expansion and partnerships. We thank you for your continued support of our organization through your dedication to fundraising, attending and organizing events, volunteering, connecting us with new partners, and increasing awareness to help FMM lead the way to treatments and cures.
{ Did You Know? }
Mitochondrial disease is more common than childhood cancer.
Upcoming Events
Most sincerely,
Check out www.hopeflies.org for all of the details Hope Flies For Friends
Hope Flies Stars for Audrey
Partners for the Cures
Hope Flies Catch the Cure
Hope Flies Walk for Abby
FMM Scientific Summit
Color Run - Miles in Memory of Michaela
Firefly Run
Hope Flies with the Braves
Interested in supporting one of our events? Contact us at info@mitochondrialdiseases.org.
February 20, 2014 Ponte Verde Beach, FL March 6 & 27, 2014 Atlanta, GA/Chattanooga, TN April 26, 2014 Broad Brook, CT June 2, 2014 Portland, ME
July 26, 2014 Turner Field, Atlanta, GA
September 13, 2014 Greenwood, IN September 19, 2014 Atlanta, GA September 20, 2014 Atlanta, GA October, 2014 Atlanta, GA
Phone 1.888.448.1495 Web mitochondrialdiseases.org
Future Digital 1111 Foundation Stealth Peptides Incorporated Mary R. Gilbert Trust
Mr. and Mrs. Mark Kessler Mr. and Mrs. Larry Klein Mr. and Mrs. Chris Martin Neiman Marcus Mr. and Mrs. Erwin Reid Mr. Griff Stanley Patricia Bowman Terwilliger Family Foundation Charitable Trust Mrs. Pam Perkowski and Mr. Mark van Weegen Webster Bank Mr. and Mrs. Iwan Williams
5424 Glenridge Drive NE Atlanta, GA 30342
$10,000 and above
Non-Profit Org. U.S. Postage Paid Atlanta, GA Permit 2563
Major Donors
Executive Director Foundation for Mitochondrial Medicine
Board of Directors Fred Blankenship Dick Boger David Green Keith Hyland, Ph.D. Steve Rothschild
Dr. John Shoffner, M.D. Anthony Soscia Frank Wren Terri Wren
Laura Stanley Executive Director Morgan Smith Operations Manager
2013 Success Highlights and Financial Overview “THE YEAR OF PARTNERSHIPS” • FMM partners with the NY based Alzheimer’s Drug Discovery Foundation to fund a $200,000 Mitochondrial Drug Discovery Project • Addition of new Board of Directors and Advisory Committee Members
Funding the Cures
Fueling Connections
Leading the Way
FMM Partners with the Alzheimer’s Drug Discovery Foundation to Provide Grant for Drug Development for Novel Mitochondrial-Directed Therapies
FMM Teams with the Georgia Coalition Fighting Parkinson’s and Wilkins Parkinson’s Foundation
Event Highlights
• New Hope Flies regional events throughout the country, including Hope Flies Stars for Audrey in Indiana, Hope Flies Miles in Memory of Michaela, in Maine and Hope Flies with the Atlanta Braves
In August 2013, The Alzheimer’s Drug Discover Foundation (ADDF) and the Foundation for Mitochondrial Medicine (FMM) announced a partnership to drive innovative translational research for mitochondrial dysfunction. The ADDF and FMM will provide a grant of up to $200,000 for a one-year duration with the possibility of follow-on funding.
• Firefly Friends Program for Youth raising awareness and funds for mitochondrial disease FMM’s strategy continues to emphasize a theme of partnership, collaboration and venture philanthropy. Funding for our mission currently comes primarily from individual donors and through our Hope Flies awareness and fundraising events. We continue to focus on diversifying our revenue model and look forward to increased revenues from private foundations, major donors and corporate partners.
Program Expenses 72%
Mitochondrial dysfunction underlies many different diseases. The brain is particularly vulnerable to changes in energy use that occur with age or because of underlying disease pathology. Novel therapies that can correct defects in mitochondria functioning have the potential to impact many different diseases — from early childhood genetic diseases to late-life neurodegenerative diseases such as Alzheimer’s disease.
Fundraising Expenses 17% Management & General Expenses 11%
Financially, in 2013, revenues totaled $333,588, with a noteworthy contribution coming from the Mary and Roland Gilbert Trust, to support our new Mitochondrial Drug Discovery project. FMM’s 2013 expenses totaled $508,172, exceeding revenues, primarily due to a significant strategic investment from cash reserves to fund program expenses like, the Mitochondrial Drug Discovery project and the foundational elements of a new “Get Your Glow On” Awareness Campaign. FMM strives to meet or exceed relevant best practice standards in its use of donor dollars. According to the BBB Giving Alliance, non-profits should spend at least 65% of its total expenses on programming activities to fund the mission, with remaining funds going to management/general operating and fundraising expenses. FMM’s program expenses were 72% of total expenses. These program expenses were for funding treatment-oriented research, awareness and information programs and partnership initiatives with related disease groups. In 2014, we will aggressively seek further funding support for jointventure research projects, such as mitochondrial drug discovery projects, with like-minded organizations, as we believe that collaboration is the key to accelerating treatments for so many. We continue to support our priorities:
1
Funding Treatmentoriented Research
2
Fueling Connections to Related Diseases
3
{ What’s in a Name? }
• Almost all cells in the body have mitochondria, tiny “power plants” that produce a body’s essential energy. • The disease can appear at any age.
The ADDF-FMM grant has been awarded to James Bennett, M.D., Ph.D., of Virginia Commonwealth University, to further research gene therapy of mitochondrial protein in the brains of mice with experimental Alzheimer’s disease. Dr. Bennett is studying rhTFAM, a novel human mitochondrial protein shown to increase mitochondrial function in cell and animal models. The protein has shown to restore memory function of aged mice while increasing mitochondrial function in brains, suggesting it has great potential to do the same in humans with impaired cognition and early Alzheimer’s disease.
Dr. James Bennett — Recipient of ADDF-FMM 2014 Mitochondrial Drug Discovery Grant
Raising Awareness
In 1898, Dr. Carl Benda coined the term “mitochondria,” which was derived from the Greek terms “mitos” (thread) and “chondros” (grandules), which describe the appearance of the mitochondrion as viewed during early cellular development.
{ Did You Know? }
Priority areas for the grant include the discovery and development of new drugs that alter mitochondria function; discovery and development of novel biomarkers of mitochondria dysfunction; validation of mitochondrial assays for drug discovery and development; and repurposing or screen existing drugs for activities related to mitochondria function.
.
{ Signs & Symptoms } The mitochondria represent the most complicated enzyme system in the body, requiring over 1,000 genes to function properly. With so many genes, patients can present in hundreds of ways.
{ Did You Know?} • fatigue • pain • seizures • poor growth • diabetes • muscle weakness & loss • social behavior disorders • respiratory disorders
• thyroid problems • neurological problems • vision / hearing loss • migraines • learning disabilities • gastrointestinal disorders • dementia
HOPE FLIES STARS FOR AUDREY: New among Hope Flies events, this year, on September 14, in Greenwood Indiana,
FMM and the Howe family hosted a successful benefit evening and spectacular lantern launch to honor their five year old, Audrey. FMM Ambassador, Colby Wren was on hand at the event as friends and family members of the Howe family raised over $17,000 and celebrated Audrey.
Katie Parsons
The Foundation for Mitochondrial Medicine (FMM) is thrilled to be part of the Georgia Coalition Fighting Parkinson’s. On September 26th, FMM joined several other local groups at a ”house party” to celebrate the premiere of the new Michael J. Fox television show. Michael J. Fox has been living with Parkinson’s for over twenty years and through his non-profit, the Michael J. Fox Foundation, he works tirelessly to fund research to cure the disease. The party hosted by Wilkins Parkinson’s Foundation, co-founder, Bill Wilkins, was joined by 60 people, including representatives of several local and national organizations, from the Emory Udall Center to the American Parkinson’s Disease Association.
• According to the CDC, 1 in 2,500 is affected by mitochondrial disease.
• Mitochondrial disease is an energy production problem.
• Mitochondrial disease means that the power plants in cells don’t function properly creating an energy crisis, as if the body has a power failure.
1) PARTICIPATE IN A HOPE FLIES EVENT— volunteer
Raising Awareness: Hope Flies Signature Events
Meet , FMM’s first Firefly Friend!
Georgia Parkinson’s Disease Coalition working together to Find the Cure. Pictured left to right: Daniel Wilkins (WPF), Bill Wilkins (WPF), Eric Burkard (APDA), Melanie Pearson (Emory Udall), Laura Stanley (Foundation for Mitochondrial Medicine), Annie Long (National Parkinson Foundation), Dr. Thomas Wichmann (Emory Udall)
How to Support the Foundation for Mitochondrial Medicine
Katie Parsons is an engaging 11-year-old girl from Marietta, Ga. She is an outgoing, happy 6th-grader who loves riding and jumping horses. In many regards, Katie is just like her classmates, except that she has mitochondrial disease. Since her diagnosis, Katie’s condition has constantly evolved through highs and lows. Through it all, Katie has stayed strong and positive. Even though from the outside she looks like nothing would be wrong, on the inside there isn’t enough energy to keep everything running they way it’s supposed to function. Katie is now a young philanthropist who is raising funds for the Foundation for Mitochondrial Medicine. She began making earrings, bookmarks, wallets, drink koozies and other items from duct tape and started Katie’s Duck Tape Kreations. She sells her items and donates a portion back to the Foundation. She also recently held a snow cone sale at her school to raise additional money. Katie sold 139 snow cones for FMM! This past July, Katie was selected to call out the official “play ball” just before the first pitch at the Hope Flies with the Braves event. More than 70 Braves fans came out before the game to meet FMM Ambassador Colby Wren and Atlanta Braves General Manager Frank Wren. Earlier this fall, Katie was recognized on 11 Alive’s Random Acts of Kindness, and she was honored as FMM’s first Firefly Friend, a program honoring youth and teens who are raising awareness and funds for mitochondrial disease. Check out more Firefly Friends: www.hopeflies.org/FireflyFriends
or attend a regional Hope Flies event or join our Hope Flies Athletes or launch one of your own. Contact us and we’ll show you the way.
2) FUEL THE CONNECTIONS — share the story of how
HOPE FLIES WALK FOR ABBY: Many thanks also to the Sauerhoefer family of Broad Brook, CT, who organized the
mitochondrial disease is related to so many common diseases. Connect with us on social media.
HOPE FLIES CATCH THE CURE: Other Hope Flies fundraising and awareness events continued including, the Firefly Run, an illuminated night-time 5K race and FMM’s signature Atlanta party — Hope Flies Catch the Cure, honoring Laura and David Green and daughter, Ellie. This year’s party featured new elements including Firefly Lounge sponsor, Hublot, the luxury watchmaker and a preview of FMM’s “Get Your Glow On” Awareness campaign.
3) DONATE — support a Hope Flies event, join our Annual Firefly Fund or make a general donation to our Campaign for the Cures.
third annual Walk for Abby. This annual event has become an all-out community family fun day with a 3 mile walk, face-painting, food and entertainment and in 2013 raised nearly $50,000 and had 500 participants.
HOPE DOES FLY!
Our Annual Firefly Fund as an additional contribution channel serves to supplement our additional fundraising campaigns and provide for operating and programmatic support. FAMILIAR CONNECTIONS
Mitochondrial dysfunction is a central element of familiar diseases.
Web of Connectivity
Epilepsy
Mitochondrial dysfunction is a central element of familiar diseases. Cerebral Palsy
Hope Flies Athletes
Hope Flies Catch the Cure
Fo un da tio n
Parkinson’s
Firefly Run, Atlanta
Join Us in 2014 as a Hope Flies Athlete for m Mit .co och ses ond isea rial M rial d edicine • www.mitochond
In December 2012, FMM kicked off the Hope Flies Athlete program. Our campaign to grow this program continued throughout this year with participation in Atlanta’s first Firefly Run, and we look forward to continued expansion throughout the country in 2014. We encourage athletes of every age, and skill level to become a Hope Flies Athlete and help raise awareness and funds in honor of someone you know with mitochondrial and related diseases. Any athletic endeavor qualifies, and it is easy to participate. Simply create a personal fundraising page, pick an event, create a team and get involved! Visit our Hope Flies Athlete website and learn more. Please contact us at athleteprogram@mitochondrialdiseases.org to get started.
Cardiomyopathy Autism
Alzheimer’s
Huntington’s
Developmental Delay
Mitochondrial Disease
Mitochondrial Dysfunction
Chronic Fatigue
Diabetes
Lou Gehrig’s
Fibromyalgia
Muscular Dystrophy
Atypical Learning Disabilities
2013 Success Highlights and Financial Overview “THE YEAR OF PARTNERSHIPS” • FMM partners with the NY based Alzheimer’s Drug Discovery Foundation to fund a $200,000 Mitochondrial Drug Discovery Project • Addition of new Board of Directors and Advisory Committee Members
Funding the Cures
Fueling Connections
Leading the Way
FMM Partners with the Alzheimer’s Drug Discovery Foundation to Provide Grant for Drug Development for Novel Mitochondrial-Directed Therapies
FMM Teams with the Georgia Coalition Fighting Parkinson’s and Wilkins Parkinson’s Foundation
Event Highlights
• New Hope Flies regional events throughout the country, including Hope Flies Stars for Audrey in Indiana, Hope Flies Miles in Memory of Michaela, in Maine and Hope Flies with the Atlanta Braves
In August 2013, The Alzheimer’s Drug Discover Foundation (ADDF) and the Foundation for Mitochondrial Medicine (FMM) announced a partnership to drive innovative translational research for mitochondrial dysfunction. The ADDF and FMM will provide a grant of up to $200,000 for a one-year duration with the possibility of follow-on funding.
• Firefly Friends Program for Youth raising awareness and funds for mitochondrial disease FMM’s strategy continues to emphasize a theme of partnership, collaboration and venture philanthropy. Funding for our mission currently comes primarily from individual donors and through our Hope Flies awareness and fundraising events. We continue to focus on diversifying our revenue model and look forward to increased revenues from private foundations, major donors and corporate partners.
Program Expenses 72%
Mitochondrial dysfunction underlies many different diseases. The brain is particularly vulnerable to changes in energy use that occur with age or because of underlying disease pathology. Novel therapies that can correct defects in mitochondria functioning have the potential to impact many different diseases — from early childhood genetic diseases to late-life neurodegenerative diseases such as Alzheimer’s disease.
Fundraising Expenses 17% Management & General Expenses 11%
Financially, in 2013, revenues totaled $333,588, with a noteworthy contribution coming from the Mary and Roland Gilbert Trust, to support our new Mitochondrial Drug Discovery project. FMM’s 2013 expenses totaled $508,172, exceeding revenues, primarily due to a significant strategic investment from cash reserves to fund program expenses like, the Mitochondrial Drug Discovery project and the foundational elements of a new “Get Your Glow On” Awareness Campaign. FMM strives to meet or exceed relevant best practice standards in its use of donor dollars. According to the BBB Giving Alliance, non-profits should spend at least 65% of its total expenses on programming activities to fund the mission, with remaining funds going to management/general operating and fundraising expenses. FMM’s program expenses were 72% of total expenses. These program expenses were for funding treatment-oriented research, awareness and information programs and partnership initiatives with related disease groups. In 2014, we will aggressively seek further funding support for jointventure research projects, such as mitochondrial drug discovery projects, with like-minded organizations, as we believe that collaboration is the key to accelerating treatments for so many. We continue to support our priorities:
1
Funding Treatmentoriented Research
2
Fueling Connections to Related Diseases
3
{ What’s in a Name? }
• Almost all cells in the body have mitochondria, tiny “power plants” that produce a body’s essential energy. • The disease can appear at any age.
The ADDF-FMM grant has been awarded to James Bennett, M.D., Ph.D., of Virginia Commonwealth University, to further research gene therapy of mitochondrial protein in the brains of mice with experimental Alzheimer’s disease. Dr. Bennett is studying rhTFAM, a novel human mitochondrial protein shown to increase mitochondrial function in cell and animal models. The protein has shown to restore memory function of aged mice while increasing mitochondrial function in brains, suggesting it has great potential to do the same in humans with impaired cognition and early Alzheimer’s disease.
Dr. James Bennett — Recipient of ADDF-FMM 2014 Mitochondrial Drug Discovery Grant
Raising Awareness
In 1898, Dr. Carl Benda coined the term “mitochondria,” which was derived from the Greek terms “mitos” (thread) and “chondros” (grandules), which describe the appearance of the mitochondrion as viewed during early cellular development.
{ Did You Know? }
Priority areas for the grant include the discovery and development of new drugs that alter mitochondria function; discovery and development of novel biomarkers of mitochondria dysfunction; validation of mitochondrial assays for drug discovery and development; and repurposing or screen existing drugs for activities related to mitochondria function.
.
{ Signs & Symptoms } The mitochondria represent the most complicated enzyme system in the body, requiring over 1,000 genes to function properly. With so many genes, patients can present in hundreds of ways.
{ Did You Know?} • fatigue • pain • seizures • poor growth • diabetes • muscle weakness & loss • social behavior disorders • respiratory disorders
• thyroid problems • neurological problems • vision / hearing loss • migraines • learning disabilities • gastrointestinal disorders • dementia
HOPE FLIES STARS FOR AUDREY: New among Hope Flies events, this year, on September 14, in Greenwood Indiana,
FMM and the Howe family hosted a successful benefit evening and spectacular lantern launch to honor their five year old, Audrey. FMM Ambassador, Colby Wren was on hand at the event as friends and family members of the Howe family raised over $17,000 and celebrated Audrey.
Katie Parsons
The Foundation for Mitochondrial Medicine (FMM) is thrilled to be part of the Georgia Coalition Fighting Parkinson’s. On September 26th, FMM joined several other local groups at a ”house party” to celebrate the premiere of the new Michael J. Fox television show. Michael J. Fox has been living with Parkinson’s for over twenty years and through his non-profit, the Michael J. Fox Foundation, he works tirelessly to fund research to cure the disease. The party hosted by Wilkins Parkinson’s Foundation, co-founder, Bill Wilkins, was joined by 60 people, including representatives of several local and national organizations, from the Emory Udall Center to the American Parkinson’s Disease Association.
• According to the CDC, 1 in 2,500 is affected by mitochondrial disease.
• Mitochondrial disease is an energy production problem.
• Mitochondrial disease means that the power plants in cells don’t function properly creating an energy crisis, as if the body has a power failure.
1) PARTICIPATE IN A HOPE FLIES EVENT— volunteer
Raising Awareness: Hope Flies Signature Events
Meet , FMM’s first Firefly Friend!
Georgia Parkinson’s Disease Coalition working together to Find the Cure. Pictured left to right: Daniel Wilkins (WPF), Bill Wilkins (WPF), Eric Burkard (APDA), Melanie Pearson (Emory Udall), Laura Stanley (Foundation for Mitochondrial Medicine), Annie Long (National Parkinson Foundation), Dr. Thomas Wichmann (Emory Udall)
How to Support the Foundation for Mitochondrial Medicine
Katie Parsons is an engaging 11-year-old girl from Marietta, Ga. She is an outgoing, happy 6th-grader who loves riding and jumping horses. In many regards, Katie is just like her classmates, except that she has mitochondrial disease. Since her diagnosis, Katie’s condition has constantly evolved through highs and lows. Through it all, Katie has stayed strong and positive. Even though from the outside she looks like nothing would be wrong, on the inside there isn’t enough energy to keep everything running they way it’s supposed to function. Katie is now a young philanthropist who is raising funds for the Foundation for Mitochondrial Medicine. She began making earrings, bookmarks, wallets, drink koozies and other items from duct tape and started Katie’s Duck Tape Kreations. She sells her items and donates a portion back to the Foundation. She also recently held a snow cone sale at her school to raise additional money. Katie sold 139 snow cones for FMM! This past July, Katie was selected to call out the official “play ball” just before the first pitch at the Hope Flies with the Braves event. More than 70 Braves fans came out before the game to meet FMM Ambassador Colby Wren and Atlanta Braves General Manager Frank Wren. Earlier this fall, Katie was recognized on 11 Alive’s Random Acts of Kindness, and she was honored as FMM’s first Firefly Friend, a program honoring youth and teens who are raising awareness and funds for mitochondrial disease. Check out more Firefly Friends: www.hopeflies.org/FireflyFriends
or attend a regional Hope Flies event or join our Hope Flies Athletes or launch one of your own. Contact us and we’ll show you the way.
2) FUEL THE CONNECTIONS — share the story of how
HOPE FLIES WALK FOR ABBY: Many thanks also to the Sauerhoefer family of Broad Brook, CT, who organized the
mitochondrial disease is related to so many common diseases. Connect with us on social media.
HOPE FLIES CATCH THE CURE: Other Hope Flies fundraising and awareness events continued including, the Firefly Run, an illuminated night-time 5K race and FMM’s signature Atlanta party — Hope Flies Catch the Cure, honoring Laura and David Green and daughter, Ellie. This year’s party featured new elements including Firefly Lounge sponsor, Hublot, the luxury watchmaker and a preview of FMM’s “Get Your Glow On” Awareness campaign.
3) DONATE — support a Hope Flies event, join our Annual Firefly Fund or make a general donation to our Campaign for the Cures.
third annual Walk for Abby. This annual event has become an all-out community family fun day with a 3 mile walk, face-painting, food and entertainment and in 2013 raised nearly $50,000 and had 500 participants.
HOPE DOES FLY!
Our Annual Firefly Fund as an additional contribution channel serves to supplement our additional fundraising campaigns and provide for operating and programmatic support. FAMILIAR CONNECTIONS
Mitochondrial dysfunction is a central element of familiar diseases.
Web of Connectivity
Epilepsy
Mitochondrial dysfunction is a central element of familiar diseases. Cerebral Palsy
Hope Flies Athletes
Hope Flies Catch the Cure
Fo un da tio n
Parkinson’s
Firefly Run, Atlanta
Join Us in 2014 as a Hope Flies Athlete for m Mit .co och ses ond isea rial M rial d edicine • www.mitochond
In December 2012, FMM kicked off the Hope Flies Athlete program. Our campaign to grow this program continued throughout this year with participation in Atlanta’s first Firefly Run, and we look forward to continued expansion throughout the country in 2014. We encourage athletes of every age, and skill level to become a Hope Flies Athlete and help raise awareness and funds in honor of someone you know with mitochondrial and related diseases. Any athletic endeavor qualifies, and it is easy to participate. Simply create a personal fundraising page, pick an event, create a team and get involved! Visit our Hope Flies Athlete website and learn more. Please contact us at athleteprogram@mitochondrialdiseases.org to get started.
Cardiomyopathy Autism
Alzheimer’s
Huntington’s
Developmental Delay
Mitochondrial Disease
Mitochondrial Dysfunction
Chronic Fatigue
Diabetes
Lou Gehrig’s
Fibromyalgia
Muscular Dystrophy
Atypical Learning Disabilities
2013 Success Highlights and Financial Overview “THE YEAR OF PARTNERSHIPS” • FMM partners with the NY based Alzheimer’s Drug Discovery Foundation to fund a $200,000 Mitochondrial Drug Discovery Project • Addition of new Board of Directors and Advisory Committee Members
Funding the Cures
Fueling Connections
Leading the Way
FMM Partners with the Alzheimer’s Drug Discovery Foundation to Provide Grant for Drug Development for Novel Mitochondrial-Directed Therapies
FMM Teams with the Georgia Coalition Fighting Parkinson’s and Wilkins Parkinson’s Foundation
Event Highlights
• New Hope Flies regional events throughout the country, including Hope Flies Stars for Audrey in Indiana, Hope Flies Miles in Memory of Michaela, in Maine and Hope Flies with the Atlanta Braves
In August 2013, The Alzheimer’s Drug Discover Foundation (ADDF) and the Foundation for Mitochondrial Medicine (FMM) announced a partnership to drive innovative translational research for mitochondrial dysfunction. The ADDF and FMM will provide a grant of up to $200,000 for a one-year duration with the possibility of follow-on funding.
• Firefly Friends Program for Youth raising awareness and funds for mitochondrial disease FMM’s strategy continues to emphasize a theme of partnership, collaboration and venture philanthropy. Funding for our mission currently comes primarily from individual donors and through our Hope Flies awareness and fundraising events. We continue to focus on diversifying our revenue model and look forward to increased revenues from private foundations, major donors and corporate partners.
Program Expenses 72%
Mitochondrial dysfunction underlies many different diseases. The brain is particularly vulnerable to changes in energy use that occur with age or because of underlying disease pathology. Novel therapies that can correct defects in mitochondria functioning have the potential to impact many different diseases — from early childhood genetic diseases to late-life neurodegenerative diseases such as Alzheimer’s disease.
Fundraising Expenses 17% Management & General Expenses 11%
Financially, in 2013, revenues totaled $333,588, with a noteworthy contribution coming from the Mary and Roland Gilbert Trust, to support our new Mitochondrial Drug Discovery project. FMM’s 2013 expenses totaled $508,172, exceeding revenues, primarily due to a significant strategic investment from cash reserves to fund program expenses like, the Mitochondrial Drug Discovery project and the foundational elements of a new “Get Your Glow On” Awareness Campaign. FMM strives to meet or exceed relevant best practice standards in its use of donor dollars. According to the BBB Giving Alliance, non-profits should spend at least 65% of its total expenses on programming activities to fund the mission, with remaining funds going to management/general operating and fundraising expenses. FMM’s program expenses were 72% of total expenses. These program expenses were for funding treatment-oriented research, awareness and information programs and partnership initiatives with related disease groups. In 2014, we will aggressively seek further funding support for jointventure research projects, such as mitochondrial drug discovery projects, with like-minded organizations, as we believe that collaboration is the key to accelerating treatments for so many. We continue to support our priorities:
1
Funding Treatmentoriented Research
2
Fueling Connections to Related Diseases
3
{ What’s in a Name? }
• Almost all cells in the body have mitochondria, tiny “power plants” that produce a body’s essential energy. • The disease can appear at any age.
The ADDF-FMM grant has been awarded to James Bennett, M.D., Ph.D., of Virginia Commonwealth University, to further research gene therapy of mitochondrial protein in the brains of mice with experimental Alzheimer’s disease. Dr. Bennett is studying rhTFAM, a novel human mitochondrial protein shown to increase mitochondrial function in cell and animal models. The protein has shown to restore memory function of aged mice while increasing mitochondrial function in brains, suggesting it has great potential to do the same in humans with impaired cognition and early Alzheimer’s disease.
Dr. James Bennett — Recipient of ADDF-FMM 2014 Mitochondrial Drug Discovery Grant
Raising Awareness
In 1898, Dr. Carl Benda coined the term “mitochondria,” which was derived from the Greek terms “mitos” (thread) and “chondros” (grandules), which describe the appearance of the mitochondrion as viewed during early cellular development.
{ Did You Know? }
Priority areas for the grant include the discovery and development of new drugs that alter mitochondria function; discovery and development of novel biomarkers of mitochondria dysfunction; validation of mitochondrial assays for drug discovery and development; and repurposing or screen existing drugs for activities related to mitochondria function.
.
{ Signs & Symptoms } The mitochondria represent the most complicated enzyme system in the body, requiring over 1,000 genes to function properly. With so many genes, patients can present in hundreds of ways.
{ Did You Know?} • fatigue • pain • seizures • poor growth • diabetes • muscle weakness & loss • social behavior disorders • respiratory disorders
• thyroid problems • neurological problems • vision / hearing loss • migraines • learning disabilities • gastrointestinal disorders • dementia
HOPE FLIES STARS FOR AUDREY: New among Hope Flies events, this year, on September 14, in Greenwood Indiana,
FMM and the Howe family hosted a successful benefit evening and spectacular lantern launch to honor their five year old, Audrey. FMM Ambassador, Colby Wren was on hand at the event as friends and family members of the Howe family raised over $17,000 and celebrated Audrey.
Katie Parsons
The Foundation for Mitochondrial Medicine (FMM) is thrilled to be part of the Georgia Coalition Fighting Parkinson’s. On September 26th, FMM joined several other local groups at a ”house party” to celebrate the premiere of the new Michael J. Fox television show. Michael J. Fox has been living with Parkinson’s for over twenty years and through his non-profit, the Michael J. Fox Foundation, he works tirelessly to fund research to cure the disease. The party hosted by Wilkins Parkinson’s Foundation, co-founder, Bill Wilkins, was joined by 60 people, including representatives of several local and national organizations, from the Emory Udall Center to the American Parkinson’s Disease Association.
• According to the CDC, 1 in 2,500 is affected by mitochondrial disease.
• Mitochondrial disease is an energy production problem.
• Mitochondrial disease means that the power plants in cells don’t function properly creating an energy crisis, as if the body has a power failure.
1) PARTICIPATE IN A HOPE FLIES EVENT— volunteer
Raising Awareness: Hope Flies Signature Events
Meet , FMM’s first Firefly Friend!
Georgia Parkinson’s Disease Coalition working together to Find the Cure. Pictured left to right: Daniel Wilkins (WPF), Bill Wilkins (WPF), Eric Burkard (APDA), Melanie Pearson (Emory Udall), Laura Stanley (Foundation for Mitochondrial Medicine), Annie Long (National Parkinson Foundation), Dr. Thomas Wichmann (Emory Udall)
How to Support the Foundation for Mitochondrial Medicine
Katie Parsons is an engaging 11-year-old girl from Marietta, Ga. She is an outgoing, happy 6th-grader who loves riding and jumping horses. In many regards, Katie is just like her classmates, except that she has mitochondrial disease. Since her diagnosis, Katie’s condition has constantly evolved through highs and lows. Through it all, Katie has stayed strong and positive. Even though from the outside she looks like nothing would be wrong, on the inside there isn’t enough energy to keep everything running they way it’s supposed to function. Katie is now a young philanthropist who is raising funds for the Foundation for Mitochondrial Medicine. She began making earrings, bookmarks, wallets, drink koozies and other items from duct tape and started Katie’s Duck Tape Kreations. She sells her items and donates a portion back to the Foundation. She also recently held a snow cone sale at her school to raise additional money. Katie sold 139 snow cones for FMM! This past July, Katie was selected to call out the official “play ball” just before the first pitch at the Hope Flies with the Braves event. More than 70 Braves fans came out before the game to meet FMM Ambassador Colby Wren and Atlanta Braves General Manager Frank Wren. Earlier this fall, Katie was recognized on 11 Alive’s Random Acts of Kindness, and she was honored as FMM’s first Firefly Friend, a program honoring youth and teens who are raising awareness and funds for mitochondrial disease. Check out more Firefly Friends: www.hopeflies.org/FireflyFriends
or attend a regional Hope Flies event or join our Hope Flies Athletes or launch one of your own. Contact us and we’ll show you the way.
2) FUEL THE CONNECTIONS — share the story of how
HOPE FLIES WALK FOR ABBY: Many thanks also to the Sauerhoefer family of Broad Brook, CT, who organized the
mitochondrial disease is related to so many common diseases. Connect with us on social media.
HOPE FLIES CATCH THE CURE: Other Hope Flies fundraising and awareness events continued including, the Firefly Run, an illuminated night-time 5K race and FMM’s signature Atlanta party — Hope Flies Catch the Cure, honoring Laura and David Green and daughter, Ellie. This year’s party featured new elements including Firefly Lounge sponsor, Hublot, the luxury watchmaker and a preview of FMM’s “Get Your Glow On” Awareness campaign.
3) DONATE — support a Hope Flies event, join our Annual Firefly Fund or make a general donation to our Campaign for the Cures.
third annual Walk for Abby. This annual event has become an all-out community family fun day with a 3 mile walk, face-painting, food and entertainment and in 2013 raised nearly $50,000 and had 500 participants.
HOPE DOES FLY!
Our Annual Firefly Fund as an additional contribution channel serves to supplement our additional fundraising campaigns and provide for operating and programmatic support. FAMILIAR CONNECTIONS
Mitochondrial dysfunction is a central element of familiar diseases.
Web of Connectivity
Epilepsy
Mitochondrial dysfunction is a central element of familiar diseases. Cerebral Palsy
Hope Flies Athletes
Hope Flies Catch the Cure
Fo un da tio n
Parkinson’s
Firefly Run, Atlanta
Join Us in 2014 as a Hope Flies Athlete for m Mit .co och ses ond isea rial M rial d edicine • www.mitochond
In December 2012, FMM kicked off the Hope Flies Athlete program. Our campaign to grow this program continued throughout this year with participation in Atlanta’s first Firefly Run, and we look forward to continued expansion throughout the country in 2014. We encourage athletes of every age, and skill level to become a Hope Flies Athlete and help raise awareness and funds in honor of someone you know with mitochondrial and related diseases. Any athletic endeavor qualifies, and it is easy to participate. Simply create a personal fundraising page, pick an event, create a team and get involved! Visit our Hope Flies Athlete website and learn more. Please contact us at athleteprogram@mitochondrialdiseases.org to get started.
Cardiomyopathy Autism
Alzheimer’s
Huntington’s
Developmental Delay
Mitochondrial Disease
Mitochondrial Dysfunction
Chronic Fatigue
Diabetes
Lou Gehrig’s
Fibromyalgia
Muscular Dystrophy
Atypical Learning Disabilities
2013 Success Highlights and Financial Overview “THE YEAR OF PARTNERSHIPS” • FMM partners with the NY based Alzheimer’s Drug Discovery Foundation to fund a $200,000 Mitochondrial Drug Discovery Project • Addition of new Board of Directors and Advisory Committee Members
Funding the Cures
Fueling Connections
Leading the Way
FMM Partners with the Alzheimer’s Drug Discovery Foundation to Provide Grant for Drug Development for Novel Mitochondrial-Directed Therapies
FMM Teams with the Georgia Coalition Fighting Parkinson’s and Wilkins Parkinson’s Foundation
Event Highlights
• New Hope Flies regional events throughout the country, including Hope Flies Stars for Audrey in Indiana, Hope Flies Miles in Memory of Michaela, in Maine and Hope Flies with the Atlanta Braves
In August 2013, The Alzheimer’s Drug Discover Foundation (ADDF) and the Foundation for Mitochondrial Medicine (FMM) announced a partnership to drive innovative translational research for mitochondrial dysfunction. The ADDF and FMM will provide a grant of up to $200,000 for a one-year duration with the possibility of follow-on funding.
• Firefly Friends Program for Youth raising awareness and funds for mitochondrial disease FMM’s strategy continues to emphasize a theme of partnership, collaboration and venture philanthropy. Funding for our mission currently comes primarily from individual donors and through our Hope Flies awareness and fundraising events. We continue to focus on diversifying our revenue model and look forward to increased revenues from private foundations, major donors and corporate partners.
Program Expenses 72%
Mitochondrial dysfunction underlies many different diseases. The brain is particularly vulnerable to changes in energy use that occur with age or because of underlying disease pathology. Novel therapies that can correct defects in mitochondria functioning have the potential to impact many different diseases — from early childhood genetic diseases to late-life neurodegenerative diseases such as Alzheimer’s disease.
Fundraising Expenses 17% Management & General Expenses 11%
Financially, in 2013, revenues totaled $333,588, with a noteworthy contribution coming from the Mary and Roland Gilbert Trust, to support our new Mitochondrial Drug Discovery project. FMM’s 2013 expenses totaled $508,172, exceeding revenues, primarily due to a significant strategic investment from cash reserves to fund program expenses like, the Mitochondrial Drug Discovery project and the foundational elements of a new “Get Your Glow On” Awareness Campaign. FMM strives to meet or exceed relevant best practice standards in its use of donor dollars. According to the BBB Giving Alliance, non-profits should spend at least 65% of its total expenses on programming activities to fund the mission, with remaining funds going to management/general operating and fundraising expenses. FMM’s program expenses were 72% of total expenses. These program expenses were for funding treatment-oriented research, awareness and information programs and partnership initiatives with related disease groups. In 2014, we will aggressively seek further funding support for jointventure research projects, such as mitochondrial drug discovery projects, with like-minded organizations, as we believe that collaboration is the key to accelerating treatments for so many. We continue to support our priorities:
1
Funding Treatmentoriented Research
2
Fueling Connections to Related Diseases
3
{ What’s in a Name? }
• Almost all cells in the body have mitochondria, tiny “power plants” that produce a body’s essential energy. • The disease can appear at any age.
The ADDF-FMM grant has been awarded to James Bennett, M.D., Ph.D., of Virginia Commonwealth University, to further research gene therapy of mitochondrial protein in the brains of mice with experimental Alzheimer’s disease. Dr. Bennett is studying rhTFAM, a novel human mitochondrial protein shown to increase mitochondrial function in cell and animal models. The protein has shown to restore memory function of aged mice while increasing mitochondrial function in brains, suggesting it has great potential to do the same in humans with impaired cognition and early Alzheimer’s disease.
Dr. James Bennett — Recipient of ADDF-FMM 2014 Mitochondrial Drug Discovery Grant
Raising Awareness
In 1898, Dr. Carl Benda coined the term “mitochondria,” which was derived from the Greek terms “mitos” (thread) and “chondros” (grandules), which describe the appearance of the mitochondrion as viewed during early cellular development.
{ Did You Know? }
Priority areas for the grant include the discovery and development of new drugs that alter mitochondria function; discovery and development of novel biomarkers of mitochondria dysfunction; validation of mitochondrial assays for drug discovery and development; and repurposing or screen existing drugs for activities related to mitochondria function.
.
{ Signs & Symptoms } The mitochondria represent the most complicated enzyme system in the body, requiring over 1,000 genes to function properly. With so many genes, patients can present in hundreds of ways.
{ Did You Know?} • fatigue • pain • seizures • poor growth • diabetes • muscle weakness & loss • social behavior disorders • respiratory disorders
• thyroid problems • neurological problems • vision / hearing loss • migraines • learning disabilities • gastrointestinal disorders • dementia
HOPE FLIES STARS FOR AUDREY: New among Hope Flies events, this year, on September 14, in Greenwood Indiana,
FMM and the Howe family hosted a successful benefit evening and spectacular lantern launch to honor their five year old, Audrey. FMM Ambassador, Colby Wren was on hand at the event as friends and family members of the Howe family raised over $17,000 and celebrated Audrey.
Katie Parsons
The Foundation for Mitochondrial Medicine (FMM) is thrilled to be part of the Georgia Coalition Fighting Parkinson’s. On September 26th, FMM joined several other local groups at a ”house party” to celebrate the premiere of the new Michael J. Fox television show. Michael J. Fox has been living with Parkinson’s for over twenty years and through his non-profit, the Michael J. Fox Foundation, he works tirelessly to fund research to cure the disease. The party hosted by Wilkins Parkinson’s Foundation, co-founder, Bill Wilkins, was joined by 60 people, including representatives of several local and national organizations, from the Emory Udall Center to the American Parkinson’s Disease Association.
• According to the CDC, 1 in 2,500 is affected by mitochondrial disease.
• Mitochondrial disease is an energy production problem.
• Mitochondrial disease means that the power plants in cells don’t function properly creating an energy crisis, as if the body has a power failure.
1) PARTICIPATE IN A HOPE FLIES EVENT— volunteer
Raising Awareness: Hope Flies Signature Events
Meet , FMM’s first Firefly Friend!
Georgia Parkinson’s Disease Coalition working together to Find the Cure. Pictured left to right: Daniel Wilkins (WPF), Bill Wilkins (WPF), Eric Burkard (APDA), Melanie Pearson (Emory Udall), Laura Stanley (Foundation for Mitochondrial Medicine), Annie Long (National Parkinson Foundation), Dr. Thomas Wichmann (Emory Udall)
How to Support the Foundation for Mitochondrial Medicine
Katie Parsons is an engaging 11-year-old girl from Marietta, Ga. She is an outgoing, happy 6th-grader who loves riding and jumping horses. In many regards, Katie is just like her classmates, except that she has mitochondrial disease. Since her diagnosis, Katie’s condition has constantly evolved through highs and lows. Through it all, Katie has stayed strong and positive. Even though from the outside she looks like nothing would be wrong, on the inside there isn’t enough energy to keep everything running they way it’s supposed to function. Katie is now a young philanthropist who is raising funds for the Foundation for Mitochondrial Medicine. She began making earrings, bookmarks, wallets, drink koozies and other items from duct tape and started Katie’s Duck Tape Kreations. She sells her items and donates a portion back to the Foundation. She also recently held a snow cone sale at her school to raise additional money. Katie sold 139 snow cones for FMM! This past July, Katie was selected to call out the official “play ball” just before the first pitch at the Hope Flies with the Braves event. More than 70 Braves fans came out before the game to meet FMM Ambassador Colby Wren and Atlanta Braves General Manager Frank Wren. Earlier this fall, Katie was recognized on 11 Alive’s Random Acts of Kindness, and she was honored as FMM’s first Firefly Friend, a program honoring youth and teens who are raising awareness and funds for mitochondrial disease. Check out more Firefly Friends: www.hopeflies.org/FireflyFriends
or attend a regional Hope Flies event or join our Hope Flies Athletes or launch one of your own. Contact us and we’ll show you the way.
2) FUEL THE CONNECTIONS — share the story of how
HOPE FLIES WALK FOR ABBY: Many thanks also to the Sauerhoefer family of Broad Brook, CT, who organized the
mitochondrial disease is related to so many common diseases. Connect with us on social media.
HOPE FLIES CATCH THE CURE: Other Hope Flies fundraising and awareness events continued including, the Firefly Run, an illuminated night-time 5K race and FMM’s signature Atlanta party — Hope Flies Catch the Cure, honoring Laura and David Green and daughter, Ellie. This year’s party featured new elements including Firefly Lounge sponsor, Hublot, the luxury watchmaker and a preview of FMM’s “Get Your Glow On” Awareness campaign.
3) DONATE — support a Hope Flies event, join our Annual Firefly Fund or make a general donation to our Campaign for the Cures.
third annual Walk for Abby. This annual event has become an all-out community family fun day with a 3 mile walk, face-painting, food and entertainment and in 2013 raised nearly $50,000 and had 500 participants.
HOPE DOES FLY!
Our Annual Firefly Fund as an additional contribution channel serves to supplement our additional fundraising campaigns and provide for operating and programmatic support. FAMILIAR CONNECTIONS
Mitochondrial dysfunction is a central element of familiar diseases.
Web of Connectivity
Epilepsy
Mitochondrial dysfunction is a central element of familiar diseases. Cerebral Palsy
Hope Flies Athletes
Hope Flies Catch the Cure
Fo un da tio n
Parkinson’s
Firefly Run, Atlanta
Join Us in 2014 as a Hope Flies Athlete for m Mit .co och ses ond isea rial M rial d edicine • www.mitochond
In December 2012, FMM kicked off the Hope Flies Athlete program. Our campaign to grow this program continued throughout this year with participation in Atlanta’s first Firefly Run, and we look forward to continued expansion throughout the country in 2014. We encourage athletes of every age, and skill level to become a Hope Flies Athlete and help raise awareness and funds in honor of someone you know with mitochondrial and related diseases. Any athletic endeavor qualifies, and it is easy to participate. Simply create a personal fundraising page, pick an event, create a team and get involved! Visit our Hope Flies Athlete website and learn more. Please contact us at athleteprogram@mitochondrialdiseases.org to get started.
Cardiomyopathy Autism
Alzheimer’s
Huntington’s
Developmental Delay
Mitochondrial Disease
Mitochondrial Dysfunction
Chronic Fatigue
Diabetes
Lou Gehrig’s
Fibromyalgia
Muscular Dystrophy
Atypical Learning Disabilities
2013 Success Highlights and Financial Overview “THE YEAR OF PARTNERSHIPS” • FMM partners with the NY based Alzheimer’s Drug Discovery Foundation to fund a $200,000 Mitochondrial Drug Discovery Project • Addition of new Board of Directors and Advisory Committee Members
Funding the Cures
Fueling Connections
Leading the Way
FMM Partners with the Alzheimer’s Drug Discovery Foundation to Provide Grant for Drug Development for Novel Mitochondrial-Directed Therapies
FMM Teams with the Georgia Coalition Fighting Parkinson’s and Wilkins Parkinson’s Foundation
Event Highlights
• New Hope Flies regional events throughout the country, including Hope Flies Stars for Audrey in Indiana, Hope Flies Miles in Memory of Michaela, in Maine and Hope Flies with the Atlanta Braves
In August 2013, The Alzheimer’s Drug Discover Foundation (ADDF) and the Foundation for Mitochondrial Medicine (FMM) announced a partnership to drive innovative translational research for mitochondrial dysfunction. The ADDF and FMM will provide a grant of up to $200,000 for a one-year duration with the possibility of follow-on funding.
• Firefly Friends Program for Youth raising awareness and funds for mitochondrial disease FMM’s strategy continues to emphasize a theme of partnership, collaboration and venture philanthropy. Funding for our mission currently comes primarily from individual donors and through our Hope Flies awareness and fundraising events. We continue to focus on diversifying our revenue model and look forward to increased revenues from private foundations, major donors and corporate partners.
Program Expenses 72%
Mitochondrial dysfunction underlies many different diseases. The brain is particularly vulnerable to changes in energy use that occur with age or because of underlying disease pathology. Novel therapies that can correct defects in mitochondria functioning have the potential to impact many different diseases — from early childhood genetic diseases to late-life neurodegenerative diseases such as Alzheimer’s disease.
Fundraising Expenses 17% Management & General Expenses 11%
Financially, in 2013, revenues totaled $333,588, with a noteworthy contribution coming from the Mary and Roland Gilbert Trust, to support our new Mitochondrial Drug Discovery project. FMM’s 2013 expenses totaled $508,172, exceeding revenues, primarily due to a significant strategic investment from cash reserves to fund program expenses like, the Mitochondrial Drug Discovery project and the foundational elements of a new “Get Your Glow On” Awareness Campaign. FMM strives to meet or exceed relevant best practice standards in its use of donor dollars. According to the BBB Giving Alliance, non-profits should spend at least 65% of its total expenses on programming activities to fund the mission, with remaining funds going to management/general operating and fundraising expenses. FMM’s program expenses were 72% of total expenses. These program expenses were for funding treatment-oriented research, awareness and information programs and partnership initiatives with related disease groups. In 2014, we will aggressively seek further funding support for jointventure research projects, such as mitochondrial drug discovery projects, with like-minded organizations, as we believe that collaboration is the key to accelerating treatments for so many. We continue to support our priorities:
1
Funding Treatmentoriented Research
2
Fueling Connections to Related Diseases
3
{ What’s in a Name? }
• Almost all cells in the body have mitochondria, tiny “power plants” that produce a body’s essential energy. • The disease can appear at any age.
The ADDF-FMM grant has been awarded to James Bennett, M.D., Ph.D., of Virginia Commonwealth University, to further research gene therapy of mitochondrial protein in the brains of mice with experimental Alzheimer’s disease. Dr. Bennett is studying rhTFAM, a novel human mitochondrial protein shown to increase mitochondrial function in cell and animal models. The protein has shown to restore memory function of aged mice while increasing mitochondrial function in brains, suggesting it has great potential to do the same in humans with impaired cognition and early Alzheimer’s disease.
Dr. James Bennett — Recipient of ADDF-FMM 2014 Mitochondrial Drug Discovery Grant
Raising Awareness
In 1898, Dr. Carl Benda coined the term “mitochondria,” which was derived from the Greek terms “mitos” (thread) and “chondros” (grandules), which describe the appearance of the mitochondrion as viewed during early cellular development.
{ Did You Know? }
Priority areas for the grant include the discovery and development of new drugs that alter mitochondria function; discovery and development of novel biomarkers of mitochondria dysfunction; validation of mitochondrial assays for drug discovery and development; and repurposing or screen existing drugs for activities related to mitochondria function.
.
{ Signs & Symptoms } The mitochondria represent the most complicated enzyme system in the body, requiring over 1,000 genes to function properly. With so many genes, patients can present in hundreds of ways.
{ Did You Know?} • fatigue • pain • seizures • poor growth • diabetes • muscle weakness & loss • social behavior disorders • respiratory disorders
• thyroid problems • neurological problems • vision / hearing loss • migraines • learning disabilities • gastrointestinal disorders • dementia
HOPE FLIES STARS FOR AUDREY: New among Hope Flies events, this year, on September 14, in Greenwood Indiana,
FMM and the Howe family hosted a successful benefit evening and spectacular lantern launch to honor their five year old, Audrey. FMM Ambassador, Colby Wren was on hand at the event as friends and family members of the Howe family raised over $17,000 and celebrated Audrey.
Katie Parsons
The Foundation for Mitochondrial Medicine (FMM) is thrilled to be part of the Georgia Coalition Fighting Parkinson’s. On September 26th, FMM joined several other local groups at a ”house party” to celebrate the premiere of the new Michael J. Fox television show. Michael J. Fox has been living with Parkinson’s for over twenty years and through his non-profit, the Michael J. Fox Foundation, he works tirelessly to fund research to cure the disease. The party hosted by Wilkins Parkinson’s Foundation, co-founder, Bill Wilkins, was joined by 60 people, including representatives of several local and national organizations, from the Emory Udall Center to the American Parkinson’s Disease Association.
• According to the CDC, 1 in 2,500 is affected by mitochondrial disease.
• Mitochondrial disease is an energy production problem.
• Mitochondrial disease means that the power plants in cells don’t function properly creating an energy crisis, as if the body has a power failure.
1) PARTICIPATE IN A HOPE FLIES EVENT— volunteer
Raising Awareness: Hope Flies Signature Events
Meet , FMM’s first Firefly Friend!
Georgia Parkinson’s Disease Coalition working together to Find the Cure. Pictured left to right: Daniel Wilkins (WPF), Bill Wilkins (WPF), Eric Burkard (APDA), Melanie Pearson (Emory Udall), Laura Stanley (Foundation for Mitochondrial Medicine), Annie Long (National Parkinson Foundation), Dr. Thomas Wichmann (Emory Udall)
How to Support the Foundation for Mitochondrial Medicine
Katie Parsons is an engaging 11-year-old girl from Marietta, Ga. She is an outgoing, happy 6th-grader who loves riding and jumping horses. In many regards, Katie is just like her classmates, except that she has mitochondrial disease. Since her diagnosis, Katie’s condition has constantly evolved through highs and lows. Through it all, Katie has stayed strong and positive. Even though from the outside she looks like nothing would be wrong, on the inside there isn’t enough energy to keep everything running they way it’s supposed to function. Katie is now a young philanthropist who is raising funds for the Foundation for Mitochondrial Medicine. She began making earrings, bookmarks, wallets, drink koozies and other items from duct tape and started Katie’s Duck Tape Kreations. She sells her items and donates a portion back to the Foundation. She also recently held a snow cone sale at her school to raise additional money. Katie sold 139 snow cones for FMM! This past July, Katie was selected to call out the official “play ball” just before the first pitch at the Hope Flies with the Braves event. More than 70 Braves fans came out before the game to meet FMM Ambassador Colby Wren and Atlanta Braves General Manager Frank Wren. Earlier this fall, Katie was recognized on 11 Alive’s Random Acts of Kindness, and she was honored as FMM’s first Firefly Friend, a program honoring youth and teens who are raising awareness and funds for mitochondrial disease. Check out more Firefly Friends: www.hopeflies.org/FireflyFriends
or attend a regional Hope Flies event or join our Hope Flies Athletes or launch one of your own. Contact us and we’ll show you the way.
2) FUEL THE CONNECTIONS — share the story of how
HOPE FLIES WALK FOR ABBY: Many thanks also to the Sauerhoefer family of Broad Brook, CT, who organized the
mitochondrial disease is related to so many common diseases. Connect with us on social media.
HOPE FLIES CATCH THE CURE: Other Hope Flies fundraising and awareness events continued including, the Firefly Run, an illuminated night-time 5K race and FMM’s signature Atlanta party — Hope Flies Catch the Cure, honoring Laura and David Green and daughter, Ellie. This year’s party featured new elements including Firefly Lounge sponsor, Hublot, the luxury watchmaker and a preview of FMM’s “Get Your Glow On” Awareness campaign.
3) DONATE — support a Hope Flies event, join our Annual Firefly Fund or make a general donation to our Campaign for the Cures.
third annual Walk for Abby. This annual event has become an all-out community family fun day with a 3 mile walk, face-painting, food and entertainment and in 2013 raised nearly $50,000 and had 500 participants.
HOPE DOES FLY!
Our Annual Firefly Fund as an additional contribution channel serves to supplement our additional fundraising campaigns and provide for operating and programmatic support. FAMILIAR CONNECTIONS
Mitochondrial dysfunction is a central element of familiar diseases.
Web of Connectivity
Epilepsy
Mitochondrial dysfunction is a central element of familiar diseases. Cerebral Palsy
Hope Flies Athletes
Hope Flies Catch the Cure
Fo un da tio n
Parkinson’s
Firefly Run, Atlanta
Join Us in 2014 as a Hope Flies Athlete for m Mit .co och ses ond isea rial M rial d edicine • www.mitochond
In December 2012, FMM kicked off the Hope Flies Athlete program. Our campaign to grow this program continued throughout this year with participation in Atlanta’s first Firefly Run, and we look forward to continued expansion throughout the country in 2014. We encourage athletes of every age, and skill level to become a Hope Flies Athlete and help raise awareness and funds in honor of someone you know with mitochondrial and related diseases. Any athletic endeavor qualifies, and it is easy to participate. Simply create a personal fundraising page, pick an event, create a team and get involved! Visit our Hope Flies Athlete website and learn more. Please contact us at athleteprogram@mitochondrialdiseases.org to get started.
Cardiomyopathy Autism
Alzheimer’s
Huntington’s
Developmental Delay
Mitochondrial Disease
Mitochondrial Dysfunction
Chronic Fatigue
Diabetes
Lou Gehrig’s
Fibromyalgia
Muscular Dystrophy
Atypical Learning Disabilities
$5,000-$7,500
Boyd Collar Nolen & Tuggle Mr. David Cohen Mr. and Mrs. Richard W. Courts IV Hublot Mr. and Mrs. Donald Kessler Mr. and Mrs. Keith Hyland Medical Neurogenetics Mr. and Mrs. John Robinson Mr. and Mrs. Meade Stone Drs. John and Karen Shoffner Mr. and Mrs. Harold Wyatt Mr. and Mrs. Frank Wren
$3,000-$4,999
Mr. and Mrs. Neville Isdell Mr. and Mrs. Todd Lacey Mr. and Mrs. John Lloyd Ms. Maurie Mintz and Mr. Markus Pokert Mr. and Mrs. Patrick Wulf
$2,000-$2,999
Mr. and Mrs. Rusty Coleman Mr. and Mrs. Clay Courts Mr. and Mrs. Ben Garren Jr. Mr. and Mrs. David Green The Hudson Family Foundation Isdell Family Foundation Mr. and Mrs. Merrick Olives Mr. and Mrs. Bill Sheppard Mr. and Mrs. Ricks Tucker Ms. Laura Stanley and Mr. Michael Van de Planque Mr. and Mrs. W. Dan Wright Mr. and Mrs. Rusty Coleman
$1,000 - $1,999
Mr. and Mrs. Joey Albert Arizona Community Foundation Mr. and Mrs. Neal Aronson Mr. and Mrs. Manny Arora The Atlanta Braves Atlas Copco Compressors LLC Mr. and Mrs. Matt Caine Mr. and Mrs. Jason Norton EQUIFAX Mr. and Mrs. Jim Frank Mr. and Mrs. Bob Green Mr. and Mrs. David P. Higgins Mr. and Mrs. Harold Hudson IntercontinentalExchange, Inc.
$500-$999
Mr. and Mrs. Andrew Abernathy Mr. and Mrs. Tim Adams Alpha Oxy-Med American Textile Company Mr. and Mrs. Manny Arora Balch Companies Mr. and Mrs. Zan Banks Mr. and Mrs. Matthew Bartelt Mr. Richard Beebe, Jr. Mr. and Mrs. John Bencich Ms. Paula Bevington Mr. Dick Boger Mr. and Mrs. Bill Bollwerk Mr. Gabe Bove Mr. and Mrs. Pat Brumbaugh Ms. Louise Cherry Chick-fil-A Mr. and Mrs. Rodes Cole Mr. and Mrs. Brian Collins Cota Construction Mr. and Mrs. Aaron Danzig Drs. Whitely and Dasilva Mr. and Mrs. Jim Defurio Mr. and Mrs. David Dombrowski Mr. and Mrs. Carl Drake Mr. and Mrs. David Edmiston Mrs. Laura Fritts Mr. and Mrs. Jeffrey Fisher Mr. and Mrs. Tony Gaines Ms. Emily Giffin & Mr. Buddy Blaha Mr. and Mrs. David Gracey Ms. Alison Stuebe and Mr. Geoffrey Green Mr. and Mrs. Richard Griggs Mr. and Mrs. Greg Grizzle Ms. Julia Haesemeyer Mr. and Mrs. Tom Hough Ms. Patricia Hurter James-Bates-Brannan-Groover-LLP Mr. and Mrs. Keith Jernigan Mr. and Mrs. Mark Kauffman Ms. Dee Krueage Mr. and Mrs. Jim Landers Mr. and Mrs. Ben LaPointe
LDJ Enterprise, Inc dba ServPro of Newington Ms. Patricia LeFebvre The Little Bake Shoppe Mr. and Mrs. Wade McKenzie Mr. and Mrs. John Mori Mr. and Mrs. Bruce Moskowitz Mr. and Mrs. Douglas Nichols Mr. and Mrs. John Norton Nutmeg Restaurant - Krini LLC Mr. and Mrs. Michael Ouweleen Mr. and Mrs. Timothy Payne Peerless Tool & Machine Company, Inc Petit Family Foundation Mr. and Mrs. Frank Reese Renn Wealth Management Mr. and Mrs. Jake Ring Mr. and Mrs. Marvin Rosenberg SAKS Incorporated Ms. Molly Smalley and Mr. Brian Scales Mr. Roger Shaffer Mr. and Mrs. Blayne Shelton Mr. and Mrs. Kenny Solomon Southern Auto Sales, Inc Mr. and Mrs. David Stallings Ms. Karen Klein and Mr. David Stearns Mr. and Mrs. Joe Stewart Mr. and Mrs. Randall Street Suntrust Bank Mr. and Mrs. Hugh Tarbutton Jr. Ms. Tracey Tiska and Mr. Peter Tomlinson TRICK 3D Mr. and Mrs. Jonathan Tuggle Mr. and Mrs. Ed Urquhart Mr. and Mrs. Jeff Ussery Bret Watts Automotive Mr. and Mrs. Scott Yates *Thank you to all of our donors. Any and all levels of support makes our Hope Fly. Please let us know if we have inadvertently had an error in the above list: info@mitochondrialdiseases.org
THE FACES OF MITOCHONDRIAL DISEASE
J.B. McGee’s Family For J. B. McGee’s family and many like it, things from the outside may seem perfectly fine and normal, but in reality, the day-to-day means daunting medications, extreme medical expenses, fatigue for the whole family, feeding tubes, ports, and CPAP’s, all of which are required to manage the entire family’s mitochondrial disease.
The
FireFlyer 2013 Annual Report
J.B. McGee’s first child, Noah, was born in 2005, seemingly healthy. In 2006, after a year of constant infections, diagnosis of sleep apnea, and surgery to take out his adenoids, Noah needed to have another surgery called a Nissen Fundoplication and a feeding tube inserted to keep him from aspirating his reflux into his lungs. Within two weeks of that surgery, J.B. and her husband learned they were expecting Jonah.
Dear FMM supporters: On behalf of our Board of Directors and everyone worldwide affected by mitochondrial disease and the many related diseases, I’d like to thank you for your continued support of the Foundation for Mitochondrial Medicine. 2013 was a year filled with many new fruitful opportunities, particularly in our efforts to fund cures and fuel connections. FMM is now poised for expansion of our initiatives, and we look forward to exciting developments in this coming year.
Soon after, J.B. and Chad realized that Jonah was following in his brother’s footsteps. Within six months, Jonah was also diagnosed with the same motility issues as Noah. Jonah also had sleep apnea and periodic limb movement disorder along with frequent wheezing and infections. He had numerous hospitalizations and by one year of age had already needed over twenty antibiotics. At last, a trip to see a new doctor for the boys led to a referral to see Dr. John Shoffner and the investigation into a genetic condition called Mitochondrial Disease set full sail.
2013 Hope Flies Catch the Cure Pictured from left to right: Danielle & We are extremely pleased to announce the Jim Poppins, Laura Stanley, Dr. John Shoffner, Laura & David Green recent addition of new Board of Directors and Advisory Committee members and look forward to their contributions to FMM’s growth and success in 2014 and beyond: Fred Blankenship WSB-TV News Anchor Dick Boger Lex-Tex International Anthony Soscia Atlantic Pharmaceuticals and Advisory Committee members include: Bob Baxter, Korn/Ferry International; Nate Bennett, Georgia State University; Paula Bevington, Bevington Advisors; Brian Dorrien, Venadar; Rich Fabritius, Brunner Advertising; and Russ Lipari, Validus Group.
Muscle biopsies and genetic testing first for Noah, then for Jonah and later for mother and father, J.B. and Chad. For J.B. and Chad, diagnoses of mitochondrial disease became the explanations for chronic lifelong symptoms that never seemed to have a single point of origin. Throughout J.B.’s life, she has suffered from fatigue, overheating, frequent dehydration and infections. During her freshman year of college, J.B. was forced to take a medical leave for symptoms, now known to be related to mitochondrial disease. Chad has had a ten year history of fatigue, pain, and GI symptoms all of which stem from mitochondrial disease.
We are very proud to announce our partnership with the Alzheimer’s Drug Discovery Foundation to co-fund innovative translational research for mitochondrial dysfunction. In 2014 and beyond, we look to continue our partnership with the ADDF as well as expand our collaborative efforts with other organizations also dedicated to funding cures for diseases with mitochondrial dysfunction as a core element.
Noah was diagnosed with gastrointestinal dysmotility, and despite the previous surgery, his sleep apnea persisted. He also had developmental delays, and J.B. and husband, Chad were positive that there had to be something more to these symptoms.
J.B. McGee has channeled her energies into writing and in 2012 published her first novel. Your support of her work helps raise awareness for mitochondrial disease and fuel hopes for treatments and eventual cures. To learn more and donate in honor of J.B. McGee and her family, visit www.hopeflies.org.
In September 2014, we will celebrate the 5th anniversary of our first Hope Flies event, our Atlanta Hope Flies Catch the Cure, which has raised more than $850,000 since its inception. As we prepare for the year ahead, we have our sights set on continued growth, expansion and partnerships. We thank you for your continued support of our organization through your dedication to fundraising, attending and organizing events, volunteering, connecting us with new partners, and increasing awareness to help FMM lead the way to treatments and cures.
{ Did You Know? }
Mitochondrial disease is more common than childhood cancer.
Upcoming Events
Most sincerely,
Check out www.hopeflies.org for all of the details Hope Flies For Friends
Hope Flies Stars for Audrey
Partners for the Cures
Hope Flies Catch the Cure
Hope Flies Walk for Abby
FMM Scientific Summit
Color Run - Miles in Memory of Michaela
Firefly Run
Hope Flies with the Braves
Interested in supporting one of our events? Contact us at info@mitochondrialdiseases.org.
February 20, 2014 Ponte Verde Beach, FL March 6 & 27, 2014 Atlanta, GA/Chattanooga, TN April 26, 2014 Broad Brook, CT June 2, 2014 Portland, ME
July 26, 2014 Turner Field, Atlanta, GA
September 13, 2014 Greenwood, IN September 19, 2014 Atlanta, GA September 20, 2014 Atlanta, GA October, 2014 Atlanta, GA
Phone 1.888.448.1495 Web mitochondrialdiseases.org
Future Digital 1111 Foundation Stealth Peptides Incorporated Mary R. Gilbert Trust
Mr. and Mrs. Mark Kessler Mr. and Mrs. Larry Klein Mr. and Mrs. Chris Martin Neiman Marcus Mr. and Mrs. Erwin Reid Mr. Griff Stanley Patricia Bowman Terwilliger Family Foundation Charitable Trust Mrs. Pam Perkowski and Mr. Mark van Weegen Webster Bank Mr. and Mrs. Iwan Williams
5424 Glenridge Drive NE Atlanta, GA 30342
$10,000 and above
Non-Profit Org. U.S. Postage Paid Atlanta, GA Permit 2563
Major Donors
Executive Director Foundation for Mitochondrial Medicine
Board of Directors Fred Blankenship Dick Boger David Green Keith Hyland, Ph.D. Steve Rothschild
Dr. John Shoffner, M.D. Anthony Soscia Frank Wren Terri Wren
Laura Stanley Executive Director Morgan Smith Operations Manager
$5,000-$7,500
Boyd Collar Nolen & Tuggle Mr. David Cohen Mr. and Mrs. Richard W. Courts IV Hublot Mr. and Mrs. Donald Kessler Mr. and Mrs. Keith Hyland Medical Neurogenetics Mr. and Mrs. John Robinson Mr. and Mrs. Meade Stone Drs. John and Karen Shoffner Mr. and Mrs. Harold Wyatt Mr. and Mrs. Frank Wren
$3,000-$4,999
Mr. and Mrs. Neville Isdell Mr. and Mrs. Todd Lacey Mr. and Mrs. John Lloyd Ms. Maurie Mintz and Mr. Markus Pokert Mr. and Mrs. Patrick Wulf
$2,000-$2,999
Mr. and Mrs. Rusty Coleman Mr. and Mrs. Clay Courts Mr. and Mrs. Ben Garren Jr. Mr. and Mrs. David Green The Hudson Family Foundation Isdell Family Foundation Mr. and Mrs. Merrick Olives Mr. and Mrs. Bill Sheppard Mr. and Mrs. Ricks Tucker Ms. Laura Stanley and Mr. Michael Van de Planque Mr. and Mrs. W. Dan Wright Mr. and Mrs. Rusty Coleman
$1,000 - $1,999
Mr. and Mrs. Joey Albert Arizona Community Foundation Mr. and Mrs. Neal Aronson Mr. and Mrs. Manny Arora The Atlanta Braves Atlas Copco Compressors LLC Mr. and Mrs. Matt Caine Mr. and Mrs. Jason Norton EQUIFAX Mr. and Mrs. Jim Frank Mr. and Mrs. Bob Green Mr. and Mrs. David P. Higgins Mr. and Mrs. Harold Hudson IntercontinentalExchange, Inc.
$500-$999
Mr. and Mrs. Andrew Abernathy Mr. and Mrs. Tim Adams Alpha Oxy-Med American Textile Company Mr. and Mrs. Manny Arora Balch Companies Mr. and Mrs. Zan Banks Mr. and Mrs. Matthew Bartelt Mr. Richard Beebe, Jr. Mr. and Mrs. John Bencich Ms. Paula Bevington Mr. Dick Boger Mr. and Mrs. Bill Bollwerk Mr. Gabe Bove Mr. and Mrs. Pat Brumbaugh Ms. Louise Cherry Chick-fil-A Mr. and Mrs. Rodes Cole Mr. and Mrs. Brian Collins Cota Construction Mr. and Mrs. Aaron Danzig Drs. Whitely and Dasilva Mr. and Mrs. Jim Defurio Mr. and Mrs. David Dombrowski Mr. and Mrs. Carl Drake Mr. and Mrs. David Edmiston Mrs. Laura Fritts Mr. and Mrs. Jeffrey Fisher Mr. and Mrs. Tony Gaines Ms. Emily Giffin & Mr. Buddy Blaha Mr. and Mrs. David Gracey Ms. Alison Stuebe and Mr. Geoffrey Green Mr. and Mrs. Richard Griggs Mr. and Mrs. Greg Grizzle Ms. Julia Haesemeyer Mr. and Mrs. Tom Hough Ms. Patricia Hurter James-Bates-Brannan-Groover-LLP Mr. and Mrs. Keith Jernigan Mr. and Mrs. Mark Kauffman Ms. Dee Krueage Mr. and Mrs. Jim Landers Mr. and Mrs. Ben LaPointe
LDJ Enterprise, Inc dba ServPro of Newington Ms. Patricia LeFebvre The Little Bake Shoppe Mr. and Mrs. Wade McKenzie Mr. and Mrs. John Mori Mr. and Mrs. Bruce Moskowitz Mr. and Mrs. Douglas Nichols Mr. and Mrs. John Norton Nutmeg Restaurant - Krini LLC Mr. and Mrs. Michael Ouweleen Mr. and Mrs. Timothy Payne Peerless Tool & Machine Company, Inc Petit Family Foundation Mr. and Mrs. Frank Reese Renn Wealth Management Mr. and Mrs. Jake Ring Mr. and Mrs. Marvin Rosenberg SAKS Incorporated Ms. Molly Smalley and Mr. Brian Scales Mr. Roger Shaffer Mr. and Mrs. Blayne Shelton Mr. and Mrs. Kenny Solomon Southern Auto Sales, Inc Mr. and Mrs. David Stallings Ms. Karen Klein and Mr. David Stearns Mr. and Mrs. Joe Stewart Mr. and Mrs. Randall Street Suntrust Bank Mr. and Mrs. Hugh Tarbutton Jr. Ms. Tracey Tiska and Mr. Peter Tomlinson TRICK 3D Mr. and Mrs. Jonathan Tuggle Mr. and Mrs. Ed Urquhart Mr. and Mrs. Jeff Ussery Bret Watts Automotive Mr. and Mrs. Scott Yates *Thank you to all of our donors. Any and all levels of support makes our Hope Fly. Please let us know if we have inadvertently had an error in the above list: info@mitochondrialdiseases.org
THE FACES OF MITOCHONDRIAL DISEASE
J.B. McGee’s Family For J. B. McGee’s family and many like it, things from the outside may seem perfectly fine and normal, but in reality, the day-to-day means daunting medications, extreme medical expenses, fatigue for the whole family, feeding tubes, ports, and CPAP’s, all of which are required to manage the entire family’s mitochondrial disease.
The
FireFlyer 2013 Annual Report
J.B. McGee’s first child, Noah, was born in 2005, seemingly healthy. In 2006, after a year of constant infections, diagnosis of sleep apnea, and surgery to take out his adenoids, Noah needed to have another surgery called a Nissen Fundoplication and a feeding tube inserted to keep him from aspirating his reflux into his lungs. Within two weeks of that surgery, J.B. and her husband learned they were expecting Jonah.
Dear FMM supporters: On behalf of our Board of Directors and everyone worldwide affected by mitochondrial disease and the many related diseases, I’d like to thank you for your continued support of the Foundation for Mitochondrial Medicine. 2013 was a year filled with many new fruitful opportunities, particularly in our efforts to fund cures and fuel connections. FMM is now poised for expansion of our initiatives, and we look forward to exciting developments in this coming year.
Soon after, J.B. and Chad realized that Jonah was following in his brother’s footsteps. Within six months, Jonah was also diagnosed with the same motility issues as Noah. Jonah also had sleep apnea and periodic limb movement disorder along with frequent wheezing and infections. He had numerous hospitalizations and by one year of age had already needed over twenty antibiotics. At last, a trip to see a new doctor for the boys led to a referral to see Dr. John Shoffner and the investigation into a genetic condition called Mitochondrial Disease set full sail.
2013 Hope Flies Catch the Cure Pictured from left to right: Danielle & We are extremely pleased to announce the Jim Poppins, Laura Stanley, Dr. John Shoffner, Laura & David Green recent addition of new Board of Directors and Advisory Committee members and look forward to their contributions to FMM’s growth and success in 2014 and beyond: Fred Blankenship WSB-TV News Anchor Dick Boger Lex-Tex International Anthony Soscia Atlantic Pharmaceuticals and Advisory Committee members include: Bob Baxter, Korn/Ferry International; Nate Bennett, Georgia State University; Paula Bevington, Bevington Advisors; Brian Dorrien, Venadar; Rich Fabritius, Brunner Advertising; and Russ Lipari, Validus Group.
Muscle biopsies and genetic testing first for Noah, then for Jonah and later for mother and father, J.B. and Chad. For J.B. and Chad, diagnoses of mitochondrial disease became the explanations for chronic lifelong symptoms that never seemed to have a single point of origin. Throughout J.B.’s life, she has suffered from fatigue, overheating, frequent dehydration and infections. During her freshman year of college, J.B. was forced to take a medical leave for symptoms, now known to be related to mitochondrial disease. Chad has had a ten year history of fatigue, pain, and GI symptoms all of which stem from mitochondrial disease.
We are very proud to announce our partnership with the Alzheimer’s Drug Discovery Foundation to co-fund innovative translational research for mitochondrial dysfunction. In 2014 and beyond, we look to continue our partnership with the ADDF as well as expand our collaborative efforts with other organizations also dedicated to funding cures for diseases with mitochondrial dysfunction as a core element.
Noah was diagnosed with gastrointestinal dysmotility, and despite the previous surgery, his sleep apnea persisted. He also had developmental delays, and J.B. and husband, Chad were positive that there had to be something more to these symptoms.
J.B. McGee has channeled her energies into writing and in 2012 published her first novel. Your support of her work helps raise awareness for mitochondrial disease and fuel hopes for treatments and eventual cures. To learn more and donate in honor of J.B. McGee and her family, visit www.hopeflies.org.
In September 2014, we will celebrate the 5th anniversary of our first Hope Flies event, our Atlanta Hope Flies Catch the Cure, which has raised more than $850,000 since its inception. As we prepare for the year ahead, we have our sights set on continued growth, expansion and partnerships. We thank you for your continued support of our organization through your dedication to fundraising, attending and organizing events, volunteering, connecting us with new partners, and increasing awareness to help FMM lead the way to treatments and cures.
{ Did You Know? }
Mitochondrial disease is more common than childhood cancer.
Upcoming Events
Most sincerely,
Check out www.hopeflies.org for all of the details Hope Flies For Friends
Hope Flies Stars for Audrey
Partners for the Cures
Hope Flies Catch the Cure
Hope Flies Walk for Abby
FMM Scientific Summit
Color Run - Miles in Memory of Michaela
Firefly Run
Hope Flies with the Braves
Interested in supporting one of our events? Contact us at info@mitochondrialdiseases.org.
February 20, 2014 Ponte Verde Beach, FL March 6 & 27, 2014 Atlanta, GA/Chattanooga, TN April 26, 2014 Broad Brook, CT June 2, 2014 Portland, ME
July 26, 2014 Turner Field, Atlanta, GA
September 13, 2014 Greenwood, IN September 19, 2014 Atlanta, GA September 20, 2014 Atlanta, GA October, 2014 Atlanta, GA
Phone 1.888.448.1495 Web mitochondrialdiseases.org
Future Digital 1111 Foundation Stealth Peptides Incorporated Mary R. Gilbert Trust
Mr. and Mrs. Mark Kessler Mr. and Mrs. Larry Klein Mr. and Mrs. Chris Martin Neiman Marcus Mr. and Mrs. Erwin Reid Mr. Griff Stanley Patricia Bowman Terwilliger Family Foundation Charitable Trust Mrs. Pam Perkowski and Mr. Mark van Weegen Webster Bank Mr. and Mrs. Iwan Williams
5424 Glenridge Drive NE Atlanta, GA 30342
$10,000 and above
Non-Profit Org. U.S. Postage Paid Atlanta, GA Permit 2563
Major Donors
Executive Director Foundation for Mitochondrial Medicine
Board of Directors Fred Blankenship Dick Boger David Green Keith Hyland, Ph.D. Steve Rothschild
Dr. John Shoffner, M.D. Anthony Soscia Frank Wren Terri Wren
Laura Stanley Executive Director Morgan Smith Operations Manager
$5,000-$7,500
Boyd Collar Nolen & Tuggle Mr. David Cohen Mr. and Mrs. Richard W. Courts IV Hublot Mr. and Mrs. Donald Kessler Mr. and Mrs. Keith Hyland Medical Neurogenetics Mr. and Mrs. John Robinson Mr. and Mrs. Meade Stone Drs. John and Karen Shoffner Mr. and Mrs. Harold Wyatt Mr. and Mrs. Frank Wren
$3,000-$4,999
Mr. and Mrs. Neville Isdell Mr. and Mrs. Todd Lacey Mr. and Mrs. John Lloyd Ms. Maurie Mintz and Mr. Markus Pokert Mr. and Mrs. Patrick Wulf
$2,000-$2,999
Mr. and Mrs. Rusty Coleman Mr. and Mrs. Clay Courts Mr. and Mrs. Ben Garren Jr. Mr. and Mrs. David Green The Hudson Family Foundation Isdell Family Foundation Mr. and Mrs. Merrick Olives Mr. and Mrs. Bill Sheppard Mr. and Mrs. Ricks Tucker Ms. Laura Stanley and Mr. Michael Van de Planque Mr. and Mrs. W. Dan Wright Mr. and Mrs. Rusty Coleman
$1,000 - $1,999
Mr. and Mrs. Joey Albert Arizona Community Foundation Mr. and Mrs. Neal Aronson Mr. and Mrs. Manny Arora The Atlanta Braves Atlas Copco Compressors LLC Mr. and Mrs. Matt Caine Mr. and Mrs. Jason Norton EQUIFAX Mr. and Mrs. Jim Frank Mr. and Mrs. Bob Green Mr. and Mrs. David P. Higgins Mr. and Mrs. Harold Hudson IntercontinentalExchange, Inc.
$500-$999
Mr. and Mrs. Andrew Abernathy Mr. and Mrs. Tim Adams Alpha Oxy-Med American Textile Company Mr. and Mrs. Manny Arora Balch Companies Mr. and Mrs. Zan Banks Mr. and Mrs. Matthew Bartelt Mr. Richard Beebe, Jr. Mr. and Mrs. John Bencich Ms. Paula Bevington Mr. Dick Boger Mr. and Mrs. Bill Bollwerk Mr. Gabe Bove Mr. and Mrs. Pat Brumbaugh Ms. Louise Cherry Chick-fil-A Mr. and Mrs. Rodes Cole Mr. and Mrs. Brian Collins Cota Construction Mr. and Mrs. Aaron Danzig Drs. Whitely and Dasilva Mr. and Mrs. Jim Defurio Mr. and Mrs. David Dombrowski Mr. and Mrs. Carl Drake Mr. and Mrs. David Edmiston Mrs. Laura Fritts Mr. and Mrs. Jeffrey Fisher Mr. and Mrs. Tony Gaines Ms. Emily Giffin & Mr. Buddy Blaha Mr. and Mrs. David Gracey Ms. Alison Stuebe and Mr. Geoffrey Green Mr. and Mrs. Richard Griggs Mr. and Mrs. Greg Grizzle Ms. Julia Haesemeyer Mr. and Mrs. Tom Hough Ms. Patricia Hurter James-Bates-Brannan-Groover-LLP Mr. and Mrs. Keith Jernigan Mr. and Mrs. Mark Kauffman Ms. Dee Krueage Mr. and Mrs. Jim Landers Mr. and Mrs. Ben LaPointe
LDJ Enterprise, Inc dba ServPro of Newington Ms. Patricia LeFebvre The Little Bake Shoppe Mr. and Mrs. Wade McKenzie Mr. and Mrs. John Mori Mr. and Mrs. Bruce Moskowitz Mr. and Mrs. Douglas Nichols Mr. and Mrs. John Norton Nutmeg Restaurant - Krini LLC Mr. and Mrs. Michael Ouweleen Mr. and Mrs. Timothy Payne Peerless Tool & Machine Company, Inc Petit Family Foundation Mr. and Mrs. Frank Reese Renn Wealth Management Mr. and Mrs. Jake Ring Mr. and Mrs. Marvin Rosenberg SAKS Incorporated Ms. Molly Smalley and Mr. Brian Scales Mr. Roger Shaffer Mr. and Mrs. Blayne Shelton Mr. and Mrs. Kenny Solomon Southern Auto Sales, Inc Mr. and Mrs. David Stallings Ms. Karen Klein and Mr. David Stearns Mr. and Mrs. Joe Stewart Mr. and Mrs. Randall Street Suntrust Bank Mr. and Mrs. Hugh Tarbutton Jr. Ms. Tracey Tiska and Mr. Peter Tomlinson TRICK 3D Mr. and Mrs. Jonathan Tuggle Mr. and Mrs. Ed Urquhart Mr. and Mrs. Jeff Ussery Bret Watts Automotive Mr. and Mrs. Scott Yates *Thank you to all of our donors. Any and all levels of support makes our Hope Fly. Please let us know if we have inadvertently had an error in the above list: info@mitochondrialdiseases.org
THE FACES OF MITOCHONDRIAL DISEASE
J.B. McGee’s Family For J. B. McGee’s family and many like it, things from the outside may seem perfectly fine and normal, but in reality, the day-to-day means daunting medications, extreme medical expenses, fatigue for the whole family, feeding tubes, ports, and CPAP’s, all of which are required to manage the entire family’s mitochondrial disease.
The
FireFlyer 2013 Annual Report
J.B. McGee’s first child, Noah, was born in 2005, seemingly healthy. In 2006, after a year of constant infections, diagnosis of sleep apnea, and surgery to take out his adenoids, Noah needed to have another surgery called a Nissen Fundoplication and a feeding tube inserted to keep him from aspirating his reflux into his lungs. Within two weeks of that surgery, J.B. and her husband learned they were expecting Jonah.
Dear FMM supporters: On behalf of our Board of Directors and everyone worldwide affected by mitochondrial disease and the many related diseases, I’d like to thank you for your continued support of the Foundation for Mitochondrial Medicine. 2013 was a year filled with many new fruitful opportunities, particularly in our efforts to fund cures and fuel connections. FMM is now poised for expansion of our initiatives, and we look forward to exciting developments in this coming year.
Soon after, J.B. and Chad realized that Jonah was following in his brother’s footsteps. Within six months, Jonah was also diagnosed with the same motility issues as Noah. Jonah also had sleep apnea and periodic limb movement disorder along with frequent wheezing and infections. He had numerous hospitalizations and by one year of age had already needed over twenty antibiotics. At last, a trip to see a new doctor for the boys led to a referral to see Dr. John Shoffner and the investigation into a genetic condition called Mitochondrial Disease set full sail.
2013 Hope Flies Catch the Cure Pictured from left to right: Danielle & We are extremely pleased to announce the Jim Poppins, Laura Stanley, Dr. John Shoffner, Laura & David Green recent addition of new Board of Directors and Advisory Committee members and look forward to their contributions to FMM’s growth and success in 2014 and beyond: Fred Blankenship WSB-TV News Anchor Dick Boger Lex-Tex International Anthony Soscia Atlantic Pharmaceuticals and Advisory Committee members include: Bob Baxter, Korn/Ferry International; Nate Bennett, Georgia State University; Paula Bevington, Bevington Advisors; Brian Dorrien, Venadar; Rich Fabritius, Brunner Advertising; and Russ Lipari, Validus Group.
Muscle biopsies and genetic testing first for Noah, then for Jonah and later for mother and father, J.B. and Chad. For J.B. and Chad, diagnoses of mitochondrial disease became the explanations for chronic lifelong symptoms that never seemed to have a single point of origin. Throughout J.B.’s life, she has suffered from fatigue, overheating, frequent dehydration and infections. During her freshman year of college, J.B. was forced to take a medical leave for symptoms, now known to be related to mitochondrial disease. Chad has had a ten year history of fatigue, pain, and GI symptoms all of which stem from mitochondrial disease.
We are very proud to announce our partnership with the Alzheimer’s Drug Discovery Foundation to co-fund innovative translational research for mitochondrial dysfunction. In 2014 and beyond, we look to continue our partnership with the ADDF as well as expand our collaborative efforts with other organizations also dedicated to funding cures for diseases with mitochondrial dysfunction as a core element.
Noah was diagnosed with gastrointestinal dysmotility, and despite the previous surgery, his sleep apnea persisted. He also had developmental delays, and J.B. and husband, Chad were positive that there had to be something more to these symptoms.
J.B. McGee has channeled her energies into writing and in 2012 published her first novel. Your support of her work helps raise awareness for mitochondrial disease and fuel hopes for treatments and eventual cures. To learn more and donate in honor of J.B. McGee and her family, visit www.hopeflies.org.
In September 2014, we will celebrate the 5th anniversary of our first Hope Flies event, our Atlanta Hope Flies Catch the Cure, which has raised more than $850,000 since its inception. As we prepare for the year ahead, we have our sights set on continued growth, expansion and partnerships. We thank you for your continued support of our organization through your dedication to fundraising, attending and organizing events, volunteering, connecting us with new partners, and increasing awareness to help FMM lead the way to treatments and cures.
{ Did You Know? }
Mitochondrial disease is more common than childhood cancer.
Upcoming Events
Most sincerely,
Check out www.hopeflies.org for all of the details Hope Flies For Friends
Hope Flies Stars for Audrey
Partners for the Cures
Hope Flies Catch the Cure
Hope Flies Walk for Abby
FMM Scientific Summit
Color Run - Miles in Memory of Michaela
Firefly Run
Hope Flies with the Braves
Interested in supporting one of our events? Contact us at info@mitochondrialdiseases.org.
February 20, 2014 Ponte Verde Beach, FL March 6 & 27, 2014 Atlanta, GA/Chattanooga, TN April 26, 2014 Broad Brook, CT June 2, 2014 Portland, ME
July 26, 2014 Turner Field, Atlanta, GA
September 13, 2014 Greenwood, IN September 19, 2014 Atlanta, GA September 20, 2014 Atlanta, GA October, 2014 Atlanta, GA
Phone 1.888.448.1495 Web mitochondrialdiseases.org
Future Digital 1111 Foundation Stealth Peptides Incorporated Mary R. Gilbert Trust
Mr. and Mrs. Mark Kessler Mr. and Mrs. Larry Klein Mr. and Mrs. Chris Martin Neiman Marcus Mr. and Mrs. Erwin Reid Mr. Griff Stanley Patricia Bowman Terwilliger Family Foundation Charitable Trust Mrs. Pam Perkowski and Mr. Mark van Weegen Webster Bank Mr. and Mrs. Iwan Williams
5424 Glenridge Drive NE Atlanta, GA 30342
$10,000 and above
Non-Profit Org. U.S. Postage Paid Atlanta, GA Permit 2563
Major Donors
Executive Director Foundation for Mitochondrial Medicine
Board of Directors Fred Blankenship Dick Boger David Green Keith Hyland, Ph.D. Steve Rothschild
Dr. John Shoffner, M.D. Anthony Soscia Frank Wren Terri Wren
Laura Stanley Executive Director Morgan Smith Operations Manager