The
fireflyer 2012 Annual Report
Dear FMM Supporters: After several years and multiple misdiagnoses, in 2009, one of my sons was finally correctly diagnosed with mitochondrial disease. When your child is diagnosed with any disease, you do your homework. You research and you learn more and unfortunately, in most cases of mitochondrial disease, the journey to diagnosis is not clear cut. In one moment of early despair, I truly thought I had only two options: 1) start medical school or 2) start the “Foundation for Mystery Diseases,” because no one could give me the answers “Hope Flies for Mama Connections”: Laura Stanley, FMM I needed or help my child. Fortunately, I was introduced to the Executive Director, Actress Holly Robinson Peete, FMM Board Member, Sandra Setin Foundation for Mitochondrial Medicine, and in 2010, I joined the Foundation as its first Executive Director because I wanted to raise awareness and do whatever I could to help find treatments and cures for this disease that, at times, has consumed my family. On behalf of our Board of Directors, and the 1 in 2,500 people affected by mitochondrial disease, thank you for your continued support of the Foundation for Mitochondrial Medicine (FMM). As a friend of the Foundation, you know that in 2010, we re-launched, re-branded and re-energized by hosting Hope Flies Catch the Cure in Atlanta and raising over $200,000. Because of the success of this event, Hope Flies became our signature fundraising program and we have continued to host Hope Flies Catch the Cure in Atlanta, and added events in other areas of the country, including the Hope Flies Walk for Abby in Connecticut and Hope Flies Sebastian Smiles in Florida and the Hope Flies Home Run Challenge with Georgia Tech. In 2012, FMM hosted actress and philanthropist Holly Robinson Peete — an advocate for Autism and Parkinson’s disease — as the keynote speaker at the first Hope Flies Health Series where Ms. Robinson Peete was joined by a panel of medical experts to discuss the connections between Autism, Parkinson’s and mitochondrial disease. In addition to these great informational and fundraising opportunities, since 2010 FMM has also funded three treatment-oriented research projects. We could not have had these successes without your support — thank you! Looking ahead, we will continue to host regional Hope Flies awareness and fundraising events and will introduce new ones, such as our Hope Flies Athlete Program. We will also continue the discussion about the link between Autism, Parkinson’s and mitochondrial disease, and host a second Hope Flies Health Series program likely examining the link between Alzheimer’s and mitochondrial disease. Because of your generosity, over the last three years, FMM has raised over $750,000 for our mission to support the development of the most promising mitochondrial disease research and treatments. It is because of this mission that in 2013, FMM will launch a campaign to meet Phase 1 of our research goals, a pre-clinical trial drug feasibility study. I am excited to partner with you to reach this goal that has the potential to impact so many families. FMM is proud of how far we’ve come in these last three years, and is excited for the places we will go. Thank you for your continued support of our growth as we fund the cures, fuel connections and lead the way. Warmly,
Laura Stanley Executive Director
Board of Directors David Green Keith Hyland, Ph.D. Steve Rothschild Dr. John Shoffner, M.D.
Sandra Setin Frank Wren Terri Wren
Laura Stanley
Executive Director
2012 Successes and Financial Overview “The Year of Outreach”
• fMRI grant to Georgia State and Georgia Tech Universities • 4 new key regional fundraising and awareness events • 2 new Shop for the Cures partners: Neiman Marcus, Rebecca Taylor, along with Jimmy Choo, Saks 5th Avenue and David Yurman • Launch of new Health Series program in conjunction with related diseases • Published White Paper—The Case for Mitochondrial Dysfunction • Hope Flies Athlete Program begins • Increased revenues by $138,534
Finances grew stronger in 2012. Revenues increased 54%, from $256,399 in 2011 to $394,933 in 2012, thanks primarily to new regional events in Tampa and Atlanta and major gifts from community-minded corporate partners like Saks 5th Avenue, and David Yurman. Expenses rose also, and still slightly exceed revenue, but only by 2.7% as compared with 12.4% last year. Consistent with organizations early in their life cycle, FMM allocates 2012 $394,933 $405,503 over 40% of the budget to 2011 $259,399 $291,510 Program Services, including research. Fundraising expenses represent 38% of the budget, while 20% of expenses are allocated to Management and General Operating. As our revenue model shifts to a stream less dominated by special events, we anticipate fundraising expenses to decrease. We look forward to increased revenues from private foundations, corporations and major donors.
Revenues
Expenses
We continue to support our priorities:
1
Awareness
2
Fueling connections to related diseases
3
Funding treatmentoriented research
{ What’s in a Name? } 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? } • 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.
Funding the Cures Research Progress Highlight FMM’s 2011 grant to Netherlands’ research team, led by Dr. Jan Smeitink, has contributed to promising results. The result of this project is that new efficient compounds have been obtained, including one of which or more has the potency to end up as a new mitochondrial drug. Based on these promising results, to which the FMM grant contributed, Dr. Smeitink’s team was recently awarded a 3 million Euro grant via the Dutch ZonMW PMRARE initiative. More details can be found in recent peer reviewed manuscripts New England Journal of Medicine and EMBO Journal. FMM’s 2012 grant to Dr. Robin Morris and his team of researchers at the Department of Psychology at Georgia State University for a joint research study at the Georgia State/Georgia Tech Joint Center for Advanced Brain Imaging is finding cognitive fatigue in children’s brain function of children with mitochondrial disease. Using Functional Magnetic Resonance Imaging and other technology, the aim of the study, originally funded by the DoD, is to determine if children with oxidative phosphorylation (OXPHOS) defects in mitochondrial disease/dysfunction show indices of brain “fatigue” through testing by functional MRI (fMRI), diffusion tensor imaging (DTI) and neuropsychological testing. OXPHOS is a cellular metabolic process the body uses to turn oxidation of nutrients into energy. While the study is ongoing, early trends note a very diverse pattern of developmental outcomes of the children who were diagnosed with Autism or ASD and mitochondrial disease when they were much younger, but who now do not meet the various research criteria for these disorders that are standardly used (ADI-R or ADOS (or both) criteria). The research team continues to focus on the clear issue of cognitive fatigue in these children and hopes to have fMRI results that will provide a more quantitative method for documenting that factor and its impact on these children’s functioning in the near future.
{ 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.
• 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
Fueling Connections Program Highlight Hope Flies Health Series 2012: An Evening with Holly Robinson Peete
This past November 2012, the Foundation for Mitochondrial Medicine (FMM) hosted its inaugural Hope Flies Health Series: An Evening with Holly Robinson Peete at the Four Seasons Hotel in Atlanta. This debut program was a wonderful success with nearly 300 guests in attendance and helped raise awareness and fuel connections among closely-related diseases including mitochondrial disease, autism and Parkinson’s.
Keynote speaker, actress and autism and Parkinson’s advocate, Holly Robinson Peete, shared her journey with her father’s Parkinson’s and her son’s autism and how she has become an advocate on behalf of her family and how others can do the same. Our panel of clinical experts: Dr. Martha Herbert, Robin Morris, Ph.D., Dr. John Shoffner and Dr. Zbigniew Wszolek, offered practical information and gave hope to families for the future as they shared
{ Did You Know?}
• 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.
exciting details of emerging research and treatments for mitochondrial disease, autism & Parkinson’s disease. The inaugural Hope Flies Health Series served as a tremendous catalyst to help fuel connections and heighten awareness between several key collaborative organizations closely related to mitochondrial disease including Autism Speaks, The Marcus Autism Center, American Parkinson’s Disease Foundation (APDA), Wilkins Parkinson’s Foundation and the Michael J. Fox Foundation. Through the Hope Flies Health Series, we have planted wonderful seeds that we are confident will grow and bloom into long-term collaborations between FMM and these organizations. Fueling connections that evening transpired in many inspirational ways: such as a Parkinson’s patient exchanging history and data for research with world renowned expert, Dr. Wszolek or the excitement and synergy when two of the medical experts met face-to-face for the first time, despite years of research together. We are grateful to our sponsors: Stealth Peptides, Hearts and Hands Therapy Services, Amicus Therapeutics, Knopp Biosciences, Medical Neurogenetics Laboratory (MNG), Northside Hospital and Dickey Media. Their generous contributions made it possible for us to underwrite attendance of many deserving faculty and family members throughout the Southeast. We look forward to sharing additional updates with our FMM friends & families as we expand our Hope Flies Health Series and information offerings throughout 2013. As a reminder, footage from the Hope Flies Health Series: An Evening with Holly Robinson Peete program is available on the FMM website.
Leading the Way Event Highlight Raising Awareness: Hope Flies Walk for Abby, Broad Brook, CT The Sauerhoefer family and practically entire town of Broad Brook, CT came out for the second year in a row to honor young Abby Sauerhoefer, affected by mitochondrial disease. Not only was nearly $40,000 raised, but also just as importantly, the outpouring of support and heart-warming efforts continue to unfold in unexpected ways. The Littlest Bake Shoppe created firefly cupcakes and Abby’s friend’s mother who designs ribbons and hats for little girls has created a firefly hairpiece called, “The Abby.” FMM sends its sincerest gratitude to the Sauerhoefer family, their friends and town of Broad Brook for raising awareness, fueling connections and funding the cures for mitochondrial disease. Hope Flies Catch the Cure, Atlanta, GA FMM’s 3rd Annual Hope Flies Catch the Cure on September 14 was another big success, raising over $200,000. Heartfelt thanks to honorary chairs, Margaret and Chris Martin and Heather and David Edmiston and Virginia and Matt Maguire 2012 party chairs. Held at Mason Murer Art Gallery, over 450 guests enjoyed the fun-filled evening of art, silent and live auctions, delicious dinner from Endive Fine Catering, cocktails from Georgia Crown Distributing and dancing to Yacht Rock Revue.
Hope Does Fly!
Fo un da tio n
New Grassroots Athletic Become a Hope Flies Athlete! Fundraising Program for m Mit .co och ses ond isea rial M rial d edicine • www.mitochond
Join our first 2012 Hope Flies Athletes, Blayne Shelton of Dunwoody, GA and Team Lauren, (Lauren Quinn) of Jacksonville, FL to become a Hope Flies Athlete by participating in any athletic endeavor, a 5K, 10K, marathon or any athletic event of your choosing. This new fundraising program launched in December 2012 at the Jacksonville, FL marathon, where Blayne ran in honor of his five year old daughter, Audrey, and where Team Lauren was formed by the Mitochondrial Disease Awareness Club at the Bolles School, in honor of sophomore, Lauren Quinn. Together, they raised over $5,000. Please contact us at athleteprogram@mitochondrialdiseases.org to get started.
How to Support the Foundation for Mitochondrial Medicine 1) Participate in a Hope Flies Event— attend a regional Hope Flies event, or become a Hope Flies Athlete with an athletic endeavor of your choice or launch one of your own. Contact us and we’ll show you the way.
2) Fuel the Connections — share the story of how
mitochondrial disease is related to so many common diseases. Connect with us on social media.
3) Donate — support a Hope Flies event, join our Annual Firefly
Fund or make a general donation to our Campaign for the Cures.
As we have grown, we are excited to establish our Annual Firefly Fund as an additional contribution channel that will serve to supplement our additional fundraising campaigns and provide for operating and FAMILIAR CONNECTIONS programmatic support. Mitochondrial dysfunction is a central element of familiar diseases.
Web of Connectivity
Epilepsy
Mitochondrial dysfunction is a central element of familiar diseases. Cerebral Palsy
Cardiomyopathy Parkinson’s
Autism
Alzheimer’s
Huntington’s
Developmental Delay
Mitochondrial Disease
Mitochondrial Dysfunction
Chronic Fatigue
Diabetes
Lou Gehrig’s
Fibromyalgia
Muscular Dystrophy
Atypical Learning Disabilities
Major Donors $6,000 and above
Atlanta Charity Clays Mr. and Mrs. Matt Mooney Mr. and Mrs. John Morgan Mr. and Mrs. Jim Poppens SAKS Incorporated Mr. and Mrs. Frank Wren Yurman Design, Inc.
$5,000-$5,999
Boyd, Collar, Nolen and Tuggle Mr. and Mrs. Richard W. Courts, IV Medical Neurogenetics, LLC John W. Robinson Family Foundation, Inc. Mr. and Mrs. John Robinson, III Stealth Peptides, Incorporated
$4,000-$4,999
Mr. Donald Kessler Mr. and Mrs. Patrick G. Renn
$3,000 - $3,999
Mr. and Mrs. Jeff Hill Mr. and Mrs. Merrick Olives Ms. Julie Sargent Mrs. Laura Stanley & Mr. Michael Van de Planque
$2,000-$2,999
Mr. and Mrs. Lowry Baldwin Mrs. Bona Belnap Mr. and Mrs. Ken Bertholf Mr. and Mrs. Mike Brown Mr. and Mrs. Clay Courts Fidelity Bank Mr. and Mrs. David Green Hearts and Hands Therapy Services Mr. and Mrs. Tim Hudson Isdell Family Foundation Mr. and Mrs. Matt Maguire Mr. and Mrs. John Mori Mr. and Mrs. Ajay Pancholy Mr. and Mrs. Steve Rothschild Mr. and Mrs. Bill Sheppard Mr. and Mrs. Marko Sonnenberg Mr. and Mrs. Ricks Tucker Wells Fargo Private Bank Mr. and Mrs. Douglas Weston Mr. and Mrs. W. Dan Wright Mr. and Mrs. Harold Wyatt
$1,000 - $1,999
Mr. and Mrs. Nick Allen Mr. and Mrs. Neal Aronson Mr. and Mrs. Jeff Belkin Mr. Nathan Bennett The Atlanta Braves Mr. and Mrs. Matt Caine Mr. and Mrs. Jack Cay Marcy and Leona Chanin Foundation, Inc. Mr. and Mrs. Rusty Coleman Mr. and Mrs. Jeffrey Curtis Amicus Therapeutics Mr. and Mrs. David Delmonte Mr. and Mrs. David Edmiston Mr. and Mrs. Jeffrey Fisher Mr. Fred Fjeld Mr. and Mrs. Jim Frank Mr. and Mrs. Andrew Fritts Mr. and Mrs. David Gracey Mr. and Mrs. Bob Green Mr. and Mrs. Hayes Greep Mr. and Mrs. Greg Grizzle Ms. Julia Haesemeyer Mr. and Mrs. David P. Higgins Mr. and Mrs. Greg Houts Mr. and Mrs. Travis Huffines Knopp Biosciences
Mr. and Mrs. Michael Kelly Mr. and Mrs. Mark Kessler Mr. and Mrs. Larry Klein Mr. and Mrs. Todd Lacey Ms. Bonnie Leadbetter Mr. and Mrs. Zachary Lee Mr. and Mrs. Steven Lehwald Mr. and Mrs. John Lloyd Mr. and Mrs. David Love Charlotte Martin, Roy Martin, Eric Martin Mr. and Mrs. Chris Martin Mr. LeRoy Martin New Hope Baptist Church Northside Hospital Nutmeg Restaurant - Krini, LLC Mr. Joseph Orr, IV Pinehill Capital Partners Mr. and Mrs. Erwin Reid Mr. and Mrs. James Robbins Mr. and Mrs. Jason Norton Mr. and Mrs. John Norton Mr. and Mrs. Joseph Rich Mr. and Mrs. Michael Rossetti Mr. and Mrs. Steff Schelke St. Bernard’s School Ms. Janet Smith Mr. Norman Stallings, Jr. Mr. and Mrs. Griff Stanley Ms. Alechia Swaim Mr. and Mrs. Hugh Tarbutton, Jr. Mr. and Mrs. William Thau Ms. Heather Tucker Waters Corporation Mr. and Mrs. Buck Wiley, III
$500-$999
Mr. Brice Adamson American Legion Post Atlas Copco Compressors, LLC Balch Companies Mr. and Mrs. Chris Baugher Mr and Mrs. John Bencich Ms. Paula Bevington Ms. Lindsey Bishop William N. Blake Trust Mr. and Mrs. Jim Blitch Mr. and Mrs. Dick Boger Mr. and Mrs. Bill Bollwerk Mr. Benton Bragg Mr. and Mrs. Charles Brewer Mr. John Brumbaugh Mr. and Mrs. Eric Busko Mr. and Mrs. Chris Caldwell Mr. and Mrs. Brett Carpenter Mr. and Mrs. Daniel Chan Ms. Louise Cherry Jimmy Choo Mr. Mark Cobb Mr. and Mrs. Rodes Cole Mr. and Mrs. A.D. Corell Mr. Angelo D’Aleo Mr. and Mrs. Mark Dannenfelser Ms. Patti Dickey Mr.and Mrs. Tom Dolan Mr. and Mrs. David Dombrowski Mr. and Mrs. Carl Drake Mr. and Mrs. Cole Ebert Ms. Elizabeth Funk Ms. Melissa Prewitt & Mr. Jim Gannon Georgia Prosthetics, Inc. Dr. and Mrs. Dave Germain The Hardman Family Foundation Mr. and Mrs. Jim Hagan Mr. and Mrs. Charles Harris Mr. and Mrs. Bob Hill Mr. and Mrs. Ed Holmes
Mr. and Mrs. Tom Hough Mr. and Mrs. George Howell Mr. and Mrs. Russ Hunt IntercontinentalExchange, Inc. Mr. and Mrs. Paul Izlar James-Bates-Brannan-Groover-LLP Mr. and Mrs. Keith Jernigan Mr. and Mrs. Siles Kellett, Jr. Mr. and Mrs. Jim Landers Mr. and Mrs. Boyd Leake Ms. Patricia LeFebvre Letourneau Bros. Construction, LLC Mr. and Mrs. Peter Lindeman Mr. and Mrs. Mark Kaufman Mr. and Mrs. Gregory Marks Mr. and Mrs. Mike McCloskey Mr. and Mrs. John McCollum Mr. and Mrs. Wade McKenzie Mr. and Mrs. Greg Michell Mr. and Mrs. Prescott Miller Mr. and Mrs. George Mori Mr. and Mrs. Bruce Moskowitz Mr. and Mrs. Douglas Nichols Mr. and Mrs. Richard Nolen Mr. and Mrs. Patrick Norton Ms. Krystyna Paluch Mr. and Mrs. Timothy Payne Peerless Tool & Machine Company, Inc. Mrs. Pam Perkowski and Mr. Mark van Weegen Petit Family Foundation Mr. and Mrs. Murray Reavis Mr. and Mrs. James Robbins Ms. Jane Romano Mr. and Mrs. Peter Rosenbaum Mr. and Mrs. Marvin Rosenberg Mr. and Mrs. Reid Ruttenberg Mr. and Mrs. Blayne Shelton Mr. and Mrs. Joel Silverfield Mr. and Mrs. Dan Skinner Mr. and Mrs. Kenny Solomon Southern Auto Sales, Inc. Mr. and Mrs. David Stallings Mr. and Mrs. Joe Stewart Ms. Mary Elizabeth Stone Mr. and Mrs. Steve Straske Mr and Mrs. Randall Street Mr. and Mrs. Ben Tarbutton Mr. Harry Teasley Mr. Ralph Thomas Mr. Trey Thomas Ms. Marguerite Timmel Mr. and Mrs. Jonathan Tuggle Mr. and Mrs. Joe Varner Drs. Whiteley and Dasila, D.M.D, LLC Mr. and Mrs. Patrick Willis Mr. & 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
The Belnap Family “We swim, bike, and run because they can’t.” —The Belnap Family, Arizona Ralph Waldo Emerson said: “Life is a journey, not a destination.” We are the parents of four wonderful children. We have fun together and we work hard. One of our family’s mottos is “The Belnaps can do hard things.” We enjoy the outdoors and traveling to new places. We have big plans for our children and want them to be happy. All seemed to be going well in our home. Things started to change in the fall of 2008 when our youngest child, Seth, developed some unusual neurological symptoms. Our destinations became hospitals and doctor’s appointments, not soccer games or soccer camps. We have been to many hospitals and doctors who did not know what was wrong with our sweet little boy Seth. The journey began and has taken us all over this country and world both physically and electronically. Our journey led us to Atlanta, Georgia where Dr. John Shoffner confirmed that Seth had Leigh’s Syndrome, a form of mitochondrial disease. We thought the journey would only be with one of our children, but, as the journey continued, our oldest daughter was diagnosed shortly after Seth. Then, in the spring of 2012, we were broadsided when our oldest son, Spencer, was also diagnosed with mitochondrial disease. This disease is terrible and discriminates against no one. Mitochondrial disease has no cure and no effective treatments. Our pledge to our children is that we will do whatever it takes to help find better treatments and eventually a cure. Please join Team Belnap in our cause to raise money for research and increase awareness for mitochondrial disease. Please join us as we swim, bike, and run because they can’t. The Belnaps and their friends have become Hope Flies Athletes and have plans to participate in several athletic events in 2013. Read more about their story at: www.ndbelnap.com.
{ Did You Know? }
Upcoming Events
Mitochondrial disease is more common than childhood cancer.
Check out www.hopeflies.org for all of the details Hope Flies Home Run Challenge
Hope Flies Stars for Audrey
Hope Flies Miles in Memory of Michaela
Hope Flies Catch the Cure
Hope Flies Walk for Abby
Hope Flies Athletes
Hope Flies Athletes
Hope Flies Athletes
Hope Flies Athletes
Interested in supporting one of our events? Contact us at info@mitochondrialdiseases.org.
February 15-May 18, 2013 Atlanta, GA April 20, 2013 Biddeford, ME
April 27, 2013 Broad Brook, CT June 8, 2013 Wallsburg, UT July 4, 2013 Atlanta, GA
September 14, 2013 Indianapolis, IN September 20, 2013 Atlanta, GA November 9, 2013 Savannah, GA December 15, 2013 Jacksonville, FL
5424 Glenridge Drive NE Atlanta, GA 30342 Phone 1.888.448.1495 Web mitochondrialdiseases.org