ADVANCING OUR VISION ANNUAL
REPORT
2015
What is NF?
Neurofibromatosis (NF) is a term for three distinct genetic disorders: NF1, NF2, and schwannomatosis. NF affects 1 in every 3,000 people. It causes tumors to grow on nerves throughout the body and can lead to blindness, deafness, bone abnormalities, learning disabilities, disabling pain, and cancer. NF affects people of every population equally, and there is not yet a cure.
ON THE COVER “ I joined the Children’s Tumor Foundation NF Endurance team 12 years ago to raise money for NF research. One day, my son Alex decided he wanted to start running and help raise awareness. My youngest son, Robby, who has NF1, and my other son, Mateo (not pictured) all trained together. Robby (left) and Alex (right) ran the Big Sur International Marathon together to raise money for NF research. Even though Alex had the ability to finish the run at a faster time, he decided he was going to stay and run it side by side with his brother. But leave it to a little brotherly rivalry as they approached the finish, they decided to finish with a full out sprint to the finish line. My husband and I were cheering them on at the finish line and it brought a smile to my face to see them supporting each other.” - as told by Leticia Leaño, Robby and Alex’s mom, who also has NF1
contents 3
Letter from the President
5
Revolutionizing Research
6
Fostering Collaboration
8
Promoting Innovation
10 Sustaining Hope 12 Raising Awareness 14 Raising Funds 16 Advocacy 18 Financial Summary 20 Donors
Founded in 1978, The Children’s Tumor Foundation (CTF) began as the first grassroots organization solely dedicated to finding treatments for NF. Today, CTF is a highly recognized national nonprofit foundation, the leading force in the fight to end NF, and a model for other innovative research endeavors.
Our mission
Drive research, expand knowledge, and advance care for the NF community.
Our vision End NF.
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“ The Children’s Tumor Foundation
has made a promise to dismantle the barriers that stand in the way of drug discovery. The fulfillment of that promise is in sight.
”
— Annette Bakker, PhD, President and Chief Scientific Officer
Dear friends, COLLABORATION was the guiding principle for 2015 at the Children’s Tumor Foundation (CTF), both in spirit and in action. Clinicians, scientists, patients, family members, volunteers, donors, fundraisers, industry members, and advocates—we have a single vision: a cure for neurofibromatosis (NF). Because of the success of the Synodos for NF2 consortia, and thanks to the philanthropic leadership of Jim Bob and Laurée Moffett, in late 2015 we launched Synodos for NF1. Because of the generosity of many of you, the Moffett’s extraordinary $2.5 million matching gift was met. Not long ago, the Children’s Tumor Foundation made a promise to dismantle the barriers that stand in the way of drug discovery. And now the fulfillment of that promise is in sight; because of your careful investments through the years, we are getting closer and closer to finding effective treatments. This past year we saw a clinical trial for the MEK inhibitor selumetinib, the most promising compound to date, shrink inoperable plexiform neurofibromas. CTF was critical in funding preclinical testing of this compound, and hopes are high that it will become the first ever FDA-approved NF treatment. These are just a few of the accomplishments this past year in the world of NF research. We are celebrating many other victories here at the Children’s Tumor Foundation: the success of our many community events, increased engagement in the patient and researcher communities, and a growing number of volunteers and donors. Our inspirational 2015 CTF Ambassador Jeff Hanson won the NASCAR Foundation’s Betty Jane France Humanitarian Award. Through the collective efforts of Jeff, his family, and all of your votes, Jeff brought home the $100,000 prize for CTF and NF research. Our vision at the Children’s Tumor Foundation is lofty, and as we grow, we rely even more on the outstanding generosity of you, our extended family of donors, fundraisers, patients, and volunteers. Every dollar you have given brings into clearer focus the day that we will see a world without NF. Your hope is our vision, an end to NF. — Annette Bakker, PhD, President and Chief Scientific Officer
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“ It gives me energy and hope to know that you are willing to come together and collaborate. And I hope that you will see the face of the patient on your darkest days and it will motivate you to keep up the fight. Because we’re counting on you, we really, really are.
”
— Renie Moss, Synodos for NF1 Patient Advocate, speaking to the Synodos for NF1 researchers in their first group meeting in Minneapolis, Minnesota
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ANNUAL REPORT 2015
Revolutionizing research From 2010 to 2015, the Children’s Tumor Foundation’s primary objective has been to fill the clinical drug development pipeline. We strategically integrated our investments into this clinical pipeline, resulting in substantial accomplishments by the end of those five years: • Over 70% of all NF data in the world has been funded or co-funded by CTF.
• CTF investments in the last five years ($26.6M) have already attracted $38.4M in follow-up funding from other sources.
• CTF’s NF Preclinical Consortium and NF Therapeutic Consortium (NFPC and NFTC) have generated 95 preclinical studies which have led to 16 clinical trials.
• One of those trials (MEK inhibitor) resulted in more than 50% of participants in a clinical trial seeing a reduction of at least 20% in their inoperable plexiform neurofibromas.
• CTF created the NF Registry, which attracted more than 6,600 patients by the end of 2015, and whose information was utilized 18 times to recruit patients to clinical trials.
• The CTF Biobank collected more than 200 tissue samples.
• CTF funding led to more than 62 publications in top peer-reviewed scientific journals.
• CTF built an innovative research model called Synodos, which attracted a “dream team” of scientists who pledged to work together collaboratively.
• CTF launched an NF data hub, providing an open access data platform to all.
The accomplishments of the past enable us to turn our eyes toward new goals. Our strategy for the next five years is to double the speed of getting effective therapies to the clinic. We are advancing our Synodos consortia, increasing our NF data hub, and expanding the NF Registry. With your help, our hope for the future includes partnerships with pharmaceutical and biotech companies, and the discovery of NF biomarkers that measure biological indicators for NF. We are planning for a future in which there are approved treatments available for use in care of patients with NF!
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Fostering collaboration
The Children’s Tumor Foundation stands firmly on the belief that solutions to NF will be born through collaboration. We strive to bring researchers, patients, and experts together in a unified vision: to collaborate, share data, and accelerate the drug discovery path to the clinic.
Synodos for NF1 Launched in 2015, Synodos for NF1 is made up of three separate consortia based on the original Synodos for NF2 model. These three consortia bring together 24 investigators from eight leading institutions and two companies. Two teams form the Preclinical Acceleration component, and focus on the development of a swine model that will inform and better develop clinical trials in humans. This model will closely resemble a human’s response to a potential treatment. These two teams share the goal of accelerating the path to a cure, but use different technologies and target different genetics to mimic NF1. The third Synodos for NF1 team works to develop treatments for Low Grade Glioma (LGG), the most common childhood brain tumor affecting children with NF1. This group plans to transform the understanding of the cellular and molecular underpinnings of these unique tumors.
The Neurofibromatosis Therapeutic Consortium (NFTC) brings together four labs to find novel targets for clinical trials. This three-year, $4 million collaboration is co-funded with NTAP (Neurofibromatosis Therapeutic Acceleration Program) and is an extension of the Neurofibromatosis Preclinical Consortium (NFPC), a five-year, $7 million program that concluded in 2013. The collaborative nature of both the NFPC and the NFTC promotes efficiency and has advanced preclinical discovery beyond what would have been achieved by labs working individually. These two consortia cooperated to perform and complete 95 preclinical trials across different models. These studies have identified 12 drug targets with promising efficacy, and 16 clinical trials have occurred based on the preclinical data gathered by NFPC and NFTC investigators.
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ANNUAL REPORT 2015
Synodos for NF2 Synodos for NF2 was established in 2014 and brings together multidisciplinary investigators from a host of centers of excellence who collaborate and share their data in real time. The Synodos for NF2 steering committee reviewed results of this collaborative team’s ongoing experiments in early November 2015. Principal Investigators from eight institutions presented the findings of their work from the first year of this three-year, three-million-dollar collaboration. Analysis of the first year’s results show that promising new drug combinations, as potential treatments for NF2, are emerging from the data. These combinations will soon be tested in cells and in animal models.
What is Synodos?
NF Conference Over 300 of the top NF researchers and clinicians from more than 15 countries around the world gathered in Monterey, California, from June 6th to 9th for the annual 2015 NF Conference. The four day event, which is the world’s largest gathering of scientists and clinicians dedicated to advancing research and care for those living with NF1, NF2, and schwannomatosis, boasted a packed agenda that was both provocative and stimulating. Participants returned home with valuable new knowledge and relationships as a sure solid foundation for future, fruitful collaborations. There was an abundance of promising clinical findings presented at the 2015 NF Conference. Among them, Scott Plotkin, MD, PhD of Harvard Medical School and Massachusetts General Hospital, shared results of clinical trials studying the effects of bevacizumab on hearing loss for patients with NF2, which affected durable improvement in hearing for nearly 50% of involved patients.
“Synodos” is a groundbreaking research collaboration of the Children’s Tumor Foundation, and represents a significant financial commitment on the part of the Foundation. Modeled after the success of “Stand-Up to Cancer,” in each Synodos collaboration all stakeholders (doctors, scientists, patients) work together to speed the drug discovery process. All data is analyzed by our partners at Sage Bionetworks. This data is shared immediately among Synodos team members, and shortly thereafter, with the rest of the world. CTF scientists serve as project leaders and manage milestones, ensuring that each project keeps moving toward optimum success.
Progress: MEK inhibitor At the NF Conference, it was announced that for the first time in the history of the treatment of plexiform neurofibromas (PNs), over 50% of patients saw decreased volume in these inoperable tumors. In a presentation titled “The Promise of MEK: Therapeutics for NF1,” Brigitte Widemann, MD, of the National Cancer Institute, reported that response data in a phase I trial for children and young adults is showing meaningful decreases in tumor volume. Anecdotal improvement in function and reduction in PNrelated pain and disfigurement was also observed. This highly successful clinical study is the result of a major investment of the Children’s Tumor Foundation NF Preclinical Consortium, wherein Nancy Ratner, PhD and D. Wade Clapp, MD demonstrated that MEK inhibitors (MEKi) have a massive result on PN tumor volume in mice.
“ We came to the conclusion that the Children’s Tumor Foundation was the RIGHT place for us to invest in finding NF treatments and hopefully, one day soon, to find a cure!
”
— Laurée Moffett, upon accepting the Children’s Humanitarian Award at the Children’s Tumor Foundation 2015 New York Gala
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Promoting innovation
The Young Investigator Award (YIA) The Children’s Tumor Foundation is pleased to have funded six Young Investigator Awards in 2015. The YIA is the Foundation’s oldest research award program and serves to advance understanding of the biology of NF1, NF2, and schwannomatosis. Of the six awardees, three are predoctoral students and three are postdoctoral fellows who are doing basic research on all forms of NF and its complications. These young scientists will be funded through this award for two years, which we hope will encourage them to pursue lifelong careers in the field of NF research, and further the basic understanding of NF biology.
Drug Discovery Initiative Award (DDI) The DDI award funds early stage research that allows researchers to quickly screen high-risk/high-potential compounds in both cell and animal models. CTF awarded eight Drug Discovery Initiative awards in 2015. Four of these awards will target novel therapies for NF1-related tumors, and four will target for NF2-related tumor therapies.
“ I want to focus
my career on the issues that face patients with NF, such as how to give people access to specialty clinics, and how to coordinate care between many different specialties.
”
— Vanessa Merker, 2015 YIA recipient for her project, “Understanding Diagnostic Delay in Schwannomatosis: A Patient Centered Approach”
Clinical Research Award (CRA) The Clinical Research Award program supports earlystage NF research involving human subjects. These awards support studies of candidate therapeutics or other interventions for the treatment of NF1, NF2, or schwannomatosis; clinical-trial-enabling or ancillary studies; natural history studies; and investigations into clinical care in NF. In 2015, two CRAs were awarded, one for a Skype-based psychosocial intervention for people with NF2, and the other to fund a sub-study within an NF1related optic pathway glioma multicenter research project.
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Biobank/Body Donation Program Originally set up to collect dermal neurofibroma surgical samples, the CTF Biobank was broadened to collect tumors, nerve, bone, and other NF1 tissues post-mortem. The tissue comes from people who previously requested that CTF arrange for them to donate their bodies to research after death. Late in 2015, the Foundation received approval to begin banking tissue from people with either NF2 or schwannomatosis. CTF’s procedure for body donation will ensure that NF1, NF2, and schwannomatosis tissue be made widely available, promising to speed treatment development.
Biomarkers The Children’s Tumor Foundation and the National Biomarker Development Alliance announced a partnership to advance biomarker development in NF with potential for applications across other rare disease areas. The field of pediatric tumors suffers from a lack of biomarkers, and nowhere is this more evident than in children’s tumors associated with neurofibromatosis. The absence of standardized, measurable biological indicators (biomarkers) makes NF even more difficult to diagnose and treat, resulting in fear and frustration not only for patients, but also for the doctors and clinicians working to better their lives. In coming years, the Children’s Tumor Foundation hopes to solve the problem of the absence of approved, measurable biological indicators for NF.
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Sustaining hope
NF Forum The NF Forum originated out of a desire to bring NF patients, families, caregivers, and friends together in an inviting atmosphere of education and fellowship. The 2015 NF Forum proved no exception. Nearly 300 people gathered in Arizona to be inspired, to learn, and to unite as one large NF family. The Forum was preceded by CTF’s Volunteer & Leadership Summit, designed to train and nurture active Foundation volunteers to become even stronger advocates in the fight to end NF. It was a full schedule of talks by expert NF clinicians, and concluded with the Scottsdale NF Walk.
NF Registry The NF Registry can be accessed at nfregistry.org and is designed to serve all patients and researchers in NF. It is a voluntary online registry that uses a secure system for collecting patient data via surveys. Based on participant answers, registrants can receive information about relevant clinical trials, view trends and averages to see how they are like and unlike other people with NF, and take an active role in finding new treatments. The NF Registry has already been shown to speed clinical trial recruitment. So far, 18 clinical trials have found participants through the NF Registry.
Neurofibromatosis Clinic Network (NFCN) The Children’s Tumor Foundation is eager to get specialized NF care to more patients around the country. In 2015, the NF Clinic Network grew to 50 clinics that serve 10,000 patients. Clinics are invited to join the NFCN based on many factors including expertise in NF care, access to specialists, number of patients seen, and commitment to educating colleagues and patients about the latest developments. NFCN clinics also demonstrate a willingness to foster relationships with local patient support groups.
“ What I walk away
with after five days: a strong sense of family and togetherness, and sincere gratitude for those that have gone before me and paved the way in the field of NF to grow CTF to what it is today. — Nicole Steinert, NF Forum attendee
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”
The Volunteer & Leadership Summit The Volunteer & Leadership Summit took place in Scottsdale, Arizona on April 15th and 16th in advance of the NF Forum. The summit provided an opportunity for our active volunteers to learn how to become more effective fundraisers, grow their events, connect with other volunteers throughout the country, and learn more about the many programs the Foundation offers. Breakout sessions included information about Regional Development, Awareness Month, NF Walk, NF Endurance, Racing4Research, Cupid’s Undie Run, and more. Volunteers made new connections and became more knowledgeable about the Foundation and our efforts to end NF.
NF Camp Over 70 youth attended the 19th annual NF Camp, which took place in two sessions in July. NF Camp is held annually at the beautiful Camp Kostopulos in Emigration Canyon, Utah. Campers enjoyed horseback riding, rope courses, whitewater rafting, and day trips to places like Boondock’s Food & Fun and Lagoon Adventure Park. New friendships were forged, old friendships invigorated, and lasting memories were made at NF Camp 2015.
“ At first I volunteered
because it was something I could do to help my son. But within weeks of becoming involved it became so much more than that. I began to meet other volunteers and CTF staff. I started realizing that I wanted to fight for them as well. Now I can’t stop until there is a cure for everyone. I believe CTF is the organization that is going to find it. The organization’s dedication and drive to find a cure is truly remarkable.
”
— Shannon McNall, NF Mom and CTF volunteer
“ My friends
at home are great, but the bond that I have with the people that have NF, same as me, is unbreakable. They are my second family and they know what I am going through. — Tegan, Utah, NF Camper
”
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Raising awareness The Children’s Tumor Foundation is committed to expanding knowledge of neurofibromatosis by providing the most up-to-date information about NF on our website, ctf.org, and in the Foundation’s publications. A vibrant presence on social media engages and strengthens the bonds of the NF community, and spreads our message (and vision) of ending NF to those without an immediate NF connection. This past year saw the Foundation grow its media outreach efforts with countless articles in newspapers across the country, and TV and radio stations broadcasting segments that featured stories of dedicated volunteers, NF walkers and endurance athletes, and most importantly, our NF Heroes.
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Niagara Falls lights up blue and green for NF Awareness Month.
May is NF Awareness Month, and in 2015 the Children’s Tumor Foundation launched a new theme, “I KNOW A FIGHTER,” to draw attention to the inspirational and remarkable stories of those living with NF, who are fighters in every sense of the word. Members of the NF community were instrumental in promoting NF awareness by working with local government on city or state proclamations, organizing fundraisers, and sharing their stories online. Local and national media took notice of NF awareness month with coverage of fundraising events, proclamations, and the Foundation’s “Shine a Light on NF” campaign, through which many landmarks across the United States and around the world lit up in blue and green during the month of May for NF awareness.
“ The city signed a proclamation to coincide with tonight’s Wells Fargo Duke Energy Center lighting. I’m so happy to hear people care about our kids this way!
”
— Michele, mom to Adam, who lives with NF
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Raising funds
“Jesse was
NF Walk The NF Walk program brings together families and friends for fun-filled, inspirational events. Frequent appearances of costumed characters, balloon animals, and face painting bring bubbling energy from start to finish. Each event is as unique as the location where it is held. In 2015, thanks to an outstanding group of volunteer organizers, NF Walk exceeded its $1 million fundraising mark for the Children’s Tumor Foundation!
two when he was diagnosed with NF1. He has been so involved with CTF that as a toddler, he used to think that their logo was his name – because he always saw his picture next to it as his family fundraised. Today, he is so aware of the CTF mission that he regularly asks if the scientists have found the cure yet. This is why we walk. We really want to tell him yes. — Jill Markland, mom to Jesse, who lives with NF
”
Racing4Research Our Racing4Research program uses professional auto racing to increase awareness of neurofibromatosis and raise funds through corporate sponsorship, personal donations, and individual fundraising. Special thanks to our amazing NF Hero families who join us, rain or shine, to cheer on the drivers and teams that support the Children’s Tumor Foundation. The 2015 race season saw the Foundation logo carried on 17 race cars, with more than 500 NF families visiting the track, wearing the blue CTF T-shirts, and enjoying incredible VIP access throughout the paddock.
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Community Events One-of-a-kind fundraising events including tea parties, comedy nights, fashion shows, and lemonade stands, are supported by our Regional Development team. These events, held throughout the year, connect our nationwide team of volunteers with their immediate communities while raising funds for NF research.
NF Endurance No challenge is too much for our NF Endurance Team, a group of athletes that run, bike, swim, and compete in events across the country and abroad. The Endurance Team is comprised of a broad spectrum of athletes, from those who are running in a 5K for the first time to experienced IRONMAN competitors.
RAAM Four women participated in the Race Across America (RAAM) event on behalf of the Children’s Tumor Foundation. Team members included CTF board member Lesley Oslica, Julie Hathcock, Hannah Turnbough, and NF Endurance staff member Angela Earle. These athletes rode constantly for 8 days and 18 hours, covering over 3,000 miles across 12 states.
“ There is
one goal that has not been met…and that’s to end NF. We will keep fighting, riding, running, walking, and fundraising.
”
— Lesley Oslica, CTF Board Member and RAAM participant
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Advocacy
Dedicated and passionate CTF volunteers advocate relentlessly for continual federal funding of NF research. We are pleased that $15 million in dedicated NF research funding was secured in the Fiscal Year 2015 congressional funding cycle. While these federal grants do not directly benefit the Foundation, the recipients of the grants are doing research that is of great value to everyone in the NF community. The CTF government affairs team, comprised of CTF staff members, committee members, and CTF volunteers, at the guidance of outside counsel Squire Patton Boggs, continued to expand the breadth of its advocacy efforts in the second half of 2015, including active engagement with the Defense Health Research Consortium, which is now comprised of over 50 organizations dedicated to the preservation of annual funding levels for the Congressional Directed Medical Research Program (“CDMRP”) within the Department of Defense. 2015 also saw an unprecedented level of collaboration and strategic alignment with other organizations that support NF research funding, including the Littlest Tumor Foundation, Advocure NF2, Texas NF, Neurofibromatosis Network, NF Team Foundation, NF Midwest, and NF Inc. These collaborations culminated in a highly successful and well-attended Congressional briefing in December 2015 that served to educate key staff on the CDMRP’s NF research portfolio, including a highly effective presentation by CTF President Annette Bakker on NF research milestones.
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“ There is something very powerful in knowing that you have a voice with important issues and that you can be heard. For me, NF Advocacy has become not only my right, but my responsibility as a mother and a volunteer leader with the Children’s Tumor Foundation.
”
— Connie Sorman, CTF Board Member, Volunteer Leadership Committee Chair,and NF Mom
NFambassador
Jeffrey Owen Hanson Jeffrey Owen Hanson, world-renowned artist, was the 2015 Children’s Tumor Foundation Ambassador. Jeff is a 22-year-old philanthropic artist who is visually impaired due to an optic nerve glioma related to NF1. Though legally blind, the Kansas native has painted and donated more than $2 million in acrylic canvases to more than 150 charitable causes since 2006. Jeff Hanson is also the 2015 winner of The NASCAR Foundation’s Betty Jane France Humanitarian Award, presented by Nationwide Insurance. The award embodies The NASCAR Foundation’s Founder Betty Jane France’s unwavering commitment to philanthropic causes, and recognizes those whose generosity and compassion have positively impacted the lives of children in their community. Jeff and the Children’s Tumor Foundation received the most online votes out of four finalists who competed in a nationwide contest that lasted for nearly two months. In honor of Jeff’s win, the Children’s Tumor Foundation received a $100,000 donation from The NASCAR Foundation.
“I’m honored that my art and philanthropic efforts continue to fund neurofibromatosis research.
”
— Jeffrey Owen Hanson, 2015 Children’s Tumor Foundation Ambassador
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Revenue 2015
3
D
65%
Fundraising Activities
“ Only 3%
of the charities we rate have received at least 6 consecutive 4-star evaluations, indicating that the Children’s Tumor Foundation outperforms most other charities in America.
”
— John P. Dugan, Charity Navigator Founder and Chairman of the Board
2015 was the sixth year in a row that the Children’s Tumor Foundation was honored with a 4-star rating from Charity Navigator, America’s largest independent evaluator of philanthropies. The Foundation is also accredited by the Better Business Bureau.
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ANNUAL REPORT 2015
Expenses 2015
12% Fund
82% 53% Research & Med
29% Public Educatio Patient Suppor
Financial summary Operating support and revenue 2015 2014 2013 Contributions – individuals $4,476,610 $8,394,155 $4,859,656 Contributions – corporations and foundations $3,499,807 $2,034,159 $1,187,633 Bequests $508 $108,398 $571,447 Contributed goods $ 772,851 $412,821 $205,922 Other income $ 56,252 $42,610 $229,554 CONTRIBUTIONS AND OTHER INCOME $8,806,028 $10,992,143 $7,054,212 2015 2014 2013 Special event revenue $ 6,640,698 $5,121,565 $5,812,397 Less: direct benefits to donors (405,301) (385,917) (325,326) Special event revenue, net $ 6,235,397 $ 4,735,648 $5,487,071
35%
Donations
TOTAL OPERATING & SUPPORT REVENUE
$ 15,041,425 $15,727,791
$12,541,283
Operating expenses
2% draising 6% Management
edical on & rt
Program Services Research and medical Public education and patient support TOTAL PROGRAM SERVICES SUPPORT SERVICES Management and general Fundraising TOTAL SUPPORT SERVICES TOTAL OPERATING EXPENSES
2015 2014 2013 $7,935,871 $8,168,115 $6,357,258 $4,417,617 $3,954,550 $3,489,791 $12,353,488 $12,122,665 $9,847,049 $978,477 $852,967 $1,692,756 $1,553,773 $2,671,233 $2,406,740
$739,138 $1,436,451 $2,175,589
$15,024,721 $14,529,405
$12,022,638
Change in Net Assets from Operations
$16,704
Other changes NON-OPERATING REVENUE
Change in Net Assets
2015
2014
$518,645
2013
$73,229
$327,816
$646,463
$ 89,933
$1,526,203
$1,165,108
2015
Net Assets, beginning of year Net Assets, end of year
$1,198,386
2014
$10,348,522 $8,822,320 $10,438,455 $10,348,522
2013
$7,657,212 $8,822,320
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withThanks The Children’s Tumor Foundation depends on the continued support of many individuals, corporations, foundations, and communities that have joined in the fight against NF. To all those who have helped to advance the Foundation’s mission in the past, and especially to those who did so in 2015, we express our heartfelt gratitude. CHAMPIONS $1,000,000+ Cupid Charities, Inc. Daniel & Jennifer Gilbert Jim Bob & Laurée Moffett STEWARDS $500,000+ Flashes of Hope PARTNERS $100,000+ The Falic Family Foundation, Inc. Jay & Wendi Farner
BENEFACTORS $25,000+ Advocure NF2 Inc. Eugene Applebaum Family Foundation Arbor Investments Irving Berlin Charitable Fund, Inc. Timothy Birkmeier & Malyka Degoa Stephen & Ellen Carpenter Charles Chen & Linglong He Clear Capital Jason Colodne Ashely & K.C. Crain Crain Communications Credit Suisse Securities Steve Daigle The Derfner Foundation Mark Dunkeson FNC, Inc. The Gerald J. Ford Family Foundation Mark & Tracy Galloway JPMorgan Chase & Co. Peter & Danialle Karmanos Tom Kartsotis Alan & Linda Landis George T. Lewis, Jr. 2001 Foundation Lockton Companies Steven & Alyson McKenzie Bryan & Katie Meklir Michael & Kelly Peterson Quicken Loans The Stewart J. Rahr Foundation Robert & Wendy Schaffer Russell Tripp Wells Fargo Foundation
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ANNUAL REPORT 2015
Gary & Charlotte Gilbert Sally Gottesman Nancy & James Grosfeld Foundation The Richard Horvitz & Erica Hartman-Horvitz Foundation Kettering Family Foundation Robert & Andrea Kramer The NASCAR Foundation Rachel Tiven
SPONSORS $10,000 The 9th Floor Foundation, Inc. Allen & Company, LLC Alltech Sandeep Alva Tom & Tish Amador American Tax Reporting, Inc. Duane Andrews Austin Community Foundation John & Christine Bakalar BancorpSouth Insurance David Barry & Anna Sewart Jeff & Julie Bass The Beaumont Foundation Belfor USA Group Inc. Bennis & Hadas Bernard Stephen & Mary Birch Foundation Jonathan & Shari Boos Robert Brainin & Nicola Kean Brainin Brown Foundation Tricia Brown-Fowler Tim Bryan Cantor Fitzgerald The Chrysler Foundation Citizens Commercial Banking Cleveland Cavaliers Coastal Drilling Company, LLC Jeffrey & Marlene Cohen Colburn Colburn Connect America Benjamin Davey Nancy M. Davies Matthew & Jennifer Duffield
PATRONS $50,000+ David & Michelle Carroll Richard Chyette Marlene & Jeffrey Cohen Philanthropic Fund Matthew & Karen Cullen Jeffrey & Wendy Eisenshtadt William & Marlene Emerson James & Cherie Flores Nathan & Catherine Forbes
Daniel Elkes Enterprise Management Group, LLC Rick Estabrook & Deborah Healey Fifth Third Bank Firstronic, LLC Forest City Enterprises, Inc. David & Terri Friedman The GE Foundation Jay & Maria Ghazal Shirley Gilbert Goldman Sachs John G. Golfinos, MD Scott & Robin Gottlieb Stephen & Myrna Greenberg David & Meredith Griffin
Forbes Bernard F. & Alva B. Gimbel Foundation Lindsay & Jodi Gross Shawn M. Krause Todd Lunsford Richard & Rachel Mandell Patrick & Julie McInnis Tony Nanci Stephen L. Piazza
The Gordon & Llura Gund Foundation Cynthia Henebry & Andrew Schoeneman Brian & Jennifer Hermelin The Armin & Esther Hirsch Foundation The Homestead Honigman Miller Schwartz & Cohn LLP ICAP Ilitch Holdings, Inc. Mark Irons JMC Steel
RBC Foundation Steven & Deborah Rosenthal Bruce Schwartz The Spiegel Family Foundation Randall & Shabnam Stanicky Stuart Match Suna VitaMedMD Robert D. Walters, Jr. The Wireless Zone Foundation for Giving
Jones Day Andrew & Frances Kallman Nancy Katzman & Randy Wertheimer Joyce Keller & Michael Walch Kenwal Steel Corporation James & Sherri Ketai Kiewit Infrastructure Southern Co. Scott Kowalkowski Drew Lovell Ryan & Heather Lovier Howard & Nancy Luckoff Richard & Jane Manoogian Foundation
D O N O R S P OT L I G H T: Moffett Family
Linda Halliday Martin The McAlaine Family Foundation Peter McKenna Kevin & Elizabeth McMeen Michigan Realtors Stephen & Eve Milstein Todd Mohr Jeffrey & Julie Morganroth Mortgage Bankers Association National Association of Hispanic Real Estate Professionals National Basketball Association Nelson Mullins Riley & Scarborough, LLP Paul & Nicole Nevitt Nomadic Expeditions Anthony & Heather Nuckolls Michael Orlando Scott & Jody Overcarsh Peerless Clothing International Jeff & Stephanie Perry Thomas & Sandra Pierce Plante Moran RAM Construction Services Paul Ramirez John Risner & Sharon Parente Matthew Rizik RM North America Winthrop & Natalie Rockefeller Kim Saperstein Priscilla Saunders Michael & Helen Schaffer Foundation Scientific Games Robert & Susan Sell Janet H. Shaver The Sheridan Family SHoP Architects Silvercup Studios Associates Puneet Singhvi & Meenal Mehta Lee & Linda Solon Dennis & Patricia Spencer Jonathan Staver & Rachel Winer Sterling Jewelers Suburban Motors Company, Inc. Robert & Julie Taubman Anderson & Marcelle Varejao The Vess Family Foundation Angelo & Colleen Vitale Todd & Joi Wagenberg Gertrude & William C. Wardlaw Fund Thomas & Priscilla Watkins
WC Vision LLC Zisson Foundation FRIENDS $1,000+ A G Foundation A. Eicoff & Company A. Pompo Electric, Inc. Caren Abramovich Acadia Pharmaceuticals Inc. Acqualine LLC ACT, Inc. Maria Dolores Aguirre Ronnie Ahmad David & Tara Aho Air Tech Cooling, Inc. April Alaniz Todd Albery Alex and Ani, LLC All Saints School The Allegis Group Foundation Alliance Media Group Daniel & Robin Altman Eric & Shari Altman Amazon.com, Inc. American Cancer Society American International Relocation Solutions The Martin & Gracia Andersen Foundation Heath Anderson Matthew Anderson Patrick Anderson Paul Anderson Andrew & Katie Androff Anthony & Lisa Arena Arkansas Children’s Hospital Arkansas Community Foundation Mike Arkison John Armstrong Rafe Armstrong Robert Aronson Chris Arsenault Ashland Specialty Ingredients G.P. American Asphalt Sam Ayling Harry & Dolores Baird Glenn Baity Sara Baker Annette Bakker & Armelle Pindon Bald Mountain Behavioral Medicine Brooke Bale Hubert & Diane Barksdale Tracey Barnes Ken & Mari Barnett Lindsey Barnett Chad & Nikki Barnhill Anthony & Mary Barra
Juan Pablo Montes Barrientos Tim & Sarah Barry Greg & Sue Bartelt Cynthia Bartus Kenan Basha John & Nellie Bastien Memorial Foundation Clifford Bates Bruce & Marlene Baumann Craig & Suzanne Baumann Cindy Baumgarten Karen Bearns William & Janet Beaulieu Robert Beck The Beck Family Foundation Adam & Jodi Becker Michael & Shaun Beckish Vicky Beckley Belkin Burden Wenig & Goldman, LLP Dan & Dorothy Bell Bell State Bank & Trust James & Carolyn Bellinson Daniel & Adi Beltzman Steve Bentley Theodore & Cynthia Berenson Burton Bergman Billy & Brenda Berris Beta Sigma Phi The Arun I & Asmita Bhatia Family Foundation Jack & Shirley Bick Derek Bilcik & Lynn Rooney Bilcik Bimbo Bakeries USA Duane & Carla Bishop Allan & Ellie Bittker Black Knight Commitment to Caring Committee David Bland & Susan Lesh R. Dale & Cecelia Blasier Elizabeth Blohm Bartlett Bloodworth Bluewater Movements, Inc. Harold & Penny B. Blumenstein Foundation Boco Enterprises Inc. Thomas & Laura Bona Romain Bonnaventure Teresa Booker Ken & Julie Booth Michael Bosley Bracewell & Giuliani, LLP Kevin Bradbury Kirk Bradshaw Jack Brainin Harry Braunstein Jeff Bresch Valerie Bressler-Hill The Briscoe Family Foundation
Jordan, Laurée, Jim Bob, and Corinne Moffett
Jim Bob & Laurée Moffett
pledged in 2014 to match dollar for dollar contributions up to $2.5 million toward Synodos for NF1. Longtime supporters of the Children’s Tumor Foundation, the Moffetts’ involvement has extended to the NF Forum, the NF Conference, Racing4Research, the New York and Detroit Galas, and many other Foundation events. This incredible family is “all in” to help in the fight to find treatments and a cure for NF. The Moffetts believe that it is only through active giving and dedicated participation that, together, we can end NF. With the help of the Moffetts and the many individuals who contributed to this matching gift fund, the $2.5 million match was met. Thank you Jim Bob and Laurée for making Synodos for NF1 a reality!
Bristol-Myers Squibb Foundation Paul Broder & Kimberly Griffiths Broder & Sachse Real Estate Services The Broder Family Foundation Inc. Susan S. Brodsky William Browm Brooks & Jennifer Brown
Esther R. Brown Joel & Andrea Brown Kristopher Brown Larry Brown Miles Brown Cathy Browne The Brownstein Family Foundation Mike Bruggeman Nina Bryan Kerry & Melissa Bubolz
ANNUAL REPORT 2015
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withThanks
22 |
Bernie & Mary Beth Buescher Buffalo Wild Wings Kathryn Bunn Linda Burdick The Burnham Foundation Richard Burstein Amy Butler Cabela’s Eric Cagle Chris Cahill Charles Cain Jessica Caizza Bobbie Noud Caleres Calfee, Halter & Griswold LLP The Callaghan Family Aidan & Lyris Campbell Rochelle Campbell The Cancer Institute at NYU Langone Medical Center
Michelle Cast CB&I Inc. Central Florida Investments, Inc. Centuy 21 Beal Joseph Cerbone Shane & Sarah Cerone Cetcon, Inc. Henry Chace Champlain Investment Partners, LLC Jason & Karen Chandler The Charina Foundation, Inc. Chris & Kristen Chase ChemTreat, Inc. Darryl & Sherry Chene Mark & Sharon Chertok Chick-fil-A Thomas Chiles
Larry Coffer Daryl & Sheila Cohoon Colbeck Capital Management, LLC Todd & Allison Cole David Colleran Jonathan Collier Eric & Mia Colodne Brigham G. Colton Richard & Didi Colton Community Health Charities of California Community Health Charities of NY Cone Health Continuum Services, LLC Roxanne Cook Ellise Cappuccio Copy Connection
Crowley Animal Clinic, Inc. William Cudney Dustin & Rhianna Curotto Current Solutions, Inc. CustomInk, LLC Stephen Cypen Peter Dameris Fred Damianos Lisa Damman Dan & Lisa Dancsok Jeffrey & Wendy Dankey Tim & Debra Dansby Patrick Darcy David Daugherty Nathan Daugherty The David Foundation, Inc. Ethan & Gretchen Davidson Rhonda & Thomas Davis Scott DeBates
Robert & Annabella DiPilla Lee & Jenny Dodds Dolan & Kalaskey LTD Arthur & Alice Domby Donatic R. Bruce & Madelyn Donoff Greg Donovan Brian Dooley Timothy & Sheila Drevyanko David Dries Michael D. Dubay Kelly Dulka Alexander Dunn Nick Dunn Dykema Gossett, PLLC EAM Land Services, Inc. Robin Early David & Gayle Ebel Mark Ebel & Catherine Laskey
Michael Capassal Ron Capp Tim Caress Caribbean K-8 Center Caribou Cabins Carlock, Copeland & Stair, LLC Candy Carlott Gillian Carpenter Daryl Carter Samuel & Heather Carter Stephen & Karen Carter Daniel & Diane Caruso CarVal Investors Sean Casey Louis N. Cassett Foundation
Samantha Chin Chipotle Mexican Grill CHMWarnick, LLC Barbara Choudhury Christopher’s Seafood and Prime Steak House Tracy Church Cirque Du Soleil Holding USA INC. Gregg Clark Kip & Allison Clarke Robert Clarke Clarus Glassboard Raymond Cloutier Catherine Coakley
Cornell University - CMAA Dan & Nicole Cornwell Nick Corovessis Laura Coruzzi & Robert Schneider Costco Wholesale Sean Cotton Couch & Firth, LLC Charles Cox Craig Realty Group Citadel, LLC Sandy Crane Jim Craven CRC Insurance Services, Inc. Jamie Cromack
Del Taco Willliam & Corinne Delaney Frank & Janet Della Fera Andrew & Evie DeLoach Demetrios A. Xanthos Insurance Agency, Inc. Design Continuum Deutsche Bank Americas Foundation Alejandro Di Bonci Peter & Leslie Diamond William Dillon Diana DiMenna Paul Dingman John & Patricia DiNozzi
Brian & Laura Eby Ecolab, Inc. Sam & Libby Edelman Effygroup Frederick & Diana Elghanayan Scott Elkins EMEALS, Inc. Emersons Commercial Management Enable Midstream Partners The Encana Cares Foundation Paul English Mark and Catherine Ensio Family Foundation
ANNUAL REPORT 2015
DONOR SPOTLIGHT: Cupid’s Undie Run
The Enterprise Holdings Foundation Anita Epps Erie Insurance Group Craig & Renee Erlich Eric & Amy Ersher Erwin Construction Co. Offices of Carmine Evangelista, CPA Christopher & Kristy Evans John & Marie Evans Marianne Evans Evenson Best Exotherm Corporation Sandra Ezeldin Fairhope Kitchen Studio Michael & Elizabeth Fascitelli Faxon Law Group, LLC Daniel & Julie Fein Doug & Debbie Feist Eric Feld Ronald & Ronda Ferber Robb Ferguson Fidelity Brokerage Services LLC Brett Fillmore Steven & Jane Fink Fire & Life Safety America FirstMerit Corporation John Novello & Rose Fiscella Paul & Sarah Fisch Kara Fisher John & Beverly Fitzgibbons Donald Fitzsimmons Robert & Cynthia Fleming Florida Hospital Medical Center David & Elyse Foltyn James Foulke Fox Sports Net Ohio, LLC Kenneth Francis Daniel & Norma Front Maxine and Stuart Frankel Foundation The Fredecker Family Foundation David Fries Marisa N. Fries Crasper Voya Foundation Hiroshi & Misako Fujisaki G-III Apparel Group, Ltd. Geoff & Sherry Galloway Thomas & Rosemary Gangel Vero & Gloria Ganio Felix & Lilliam Garcia Rodrigo Garduno Garcia Gordon Garrett Peter & Bonnie Gatof GCM Grosvenor GE Power Systeme Norman & Sondra Gechlik
Geico Philanthropic Foundation Mahmood & Schelaine Ghassemi Michael Gibson Gibson, Dunn & Crutcher LLP Merrill Gildersleeve & Anore Novak Mitchell Ginzburg Miles Glascock Karl & Kathleen Gleiss Lewis Goldbeck Marc & Beth Goldberg Morris Goldfarb Stuart & Marcey Goldner Jon Goldstein Kenneth & Laura Goodkind Ronald Goodman Goodwin & Goodwin, LLP Danielle Gordon Kathleen & David Gordon Gordon Holdings, Inc. James Goss Larry Gossard Kate & Dave Gowans Geoffrey Gradler Gina Graham Grainger Grand Circle Foundation Grant Genovese & Baratta, LLP The Grantham Family Fund James & Margaret Gray Samuel & Lori Gray Catherine Green Stephen & Nancy Green
Robert & Deanna Greenberg Greenridge Farming, Inc. Robert & Dana Greenwood Jason & Angela Gregorec Thomas & Anita Gribben Joseph Griffith John & Karen Guardiola Nicholas & Kristin Guehlstorf Kiran Gupta Joseph Gurak Joel & Kelly Gurman Donald & Roseen Gustafson Stella & Charles Guttman Foundation H2M Architects + Engineers Bryan Hahn Eric & Lisa Hall Bill Halstead Doug & Wendy Hamburger Amanda & Dave Hammond Adam Handwerker Nathan & Elaine Hanke Sean & Merri Hannity Julie, Hal, & Jeff Hanson Rush & Linda Harding Harman Management Corporation
Cupid’s Undie Run February 2015 marked the sixth consecutive Cupid’s Undie Run to benefit the Children’s Tumor Foundation. Cupid’s has grown in leaps and bounds since 2010, when participants raised $10,000, to 2015, when more than $3.2 million was raised for NF research. Everyone’s favorite Valentine’s Daythemed party has shown what an amazing group of generous do-gooders will do for an important cause. Always ready to express some “hilarity for charity” and never afraid of “freezin’ for a reason,” these cherubs take the NF fight to 35 cities across the United States as well as 3 cities in Australia. The Children’s Tumor Foundation is grateful for Cupid’s willingness to take such bold, creative steps to find a cure for NF.
James & Renee Harrell William & Lenore Harris Robert Harrison John Hartzell Christina Hatch Head Hunters Salon & Day Spa Thomas & Elizabeth Hefferon Sharon Heflin Jeff & Jill Hennig Jacqueline Henry Robert Hensley
G.W. Henssler & Associates, LTD Susan Herbach Heritage Vision Plans, Inc. Linda & Ronny Herland The Hermelin Family Support Foundation Maurice & Jacqueline Herz Derek Latka & Blair Hess Marcus Hester Herren & Susan Hickingbotham Barbara K. Hicks Tod Highfield
ANNUAL REPORT 2015
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withThanks Elaine Hill Michael Hill Harold Hilley Jason S. & Meredith Hillman Kenneth Hines HMC Presents - Jingle Bells for Cancer Cells Stephan & Deborah Hodge Jeff Hoen Lisa Hofer Willliam Hoffman Jon Holstrom Paul Holton Home Buyers Marketing, Inc. The Home Depot Tammy & Randy Homer Earl Homsher Peter & Dana Hopper Hormel Foods Corporation Brian Hoskins Lindsay Hostetter Theodore Houck Kevin & Lisa Houle Jane Howland Ed & Betsie Huben Richard & Marianne Huelsmann Dan & Kim Huish Steven Hummel Jerry & Maureen Hunter Huntington Bank Michael & Donna Hussey Mark & LaDeana Huyler Bill Hyde I.C.A.N. Foods, Inc. I.U.O.E. Local 12
Iberdrola Renewables Holdings, Inc. Image One Corporation Imagine Paul Mitchell Leila Imhof Impact Golf Center Insignia National Title Agency, LLC International Motor Sports Association, LLC International Union of Operating Engineers Local 12 Ironman World Triathlon Corporation Becky & Lance Irvine Jackson Thornton & Co., P.C. David & Dana Jacob Damaris Jacques Richard & Amanda Jaffa Jaffe, Rait, Heuer & Weiss Nicole Jala
Nasser & Samia Jallad Jennifer Jeandron Jesse & Tyler Jenner Douglas C. Jennings Brian & Heidi Jensen Hans & Barbara Jepson John Deere Construction & Forestry Company Eric & Mary Beth Johnson Van Johnson Mark Johnson & Associates Chris & Sarah Jones Harry & Riki Jones Kenneth R. Jordan Jerry J. Jusek JV Kelley Enterprise LLC Michael Kaczmarek Robert Kahn Michelle Kann Barry & Rochelle Kaplan Barbara Ann Karmanos Cancer Institute Richard & Leslie Kates Aubrey & Roleen Katz The Rachel & Drew Katz Foundation, Inc. David & Heather Katzman
Steven & Elizabeth Katzman George & Mariana Kaufman Scott Kaufman Andrew Kean Susan Kean Joe & Linda Keller Barry & Lynda Keller Community Fund II Allen & Vickie Kelley L. Michael & Karen Kelly Harris & Eliza Kempner Fund Kendra Scott Design, Inc. Kenneth Jay Lane Bridget KerMorris Penn Ketchum Melissa Kieran Luci Kirk Kiwanis Club of Midlothian Annemarie Kleabir Ronald & Stacy Klein George Klett Ron & Tamara Knapp Ryan & Rene Knapp Knights Of Columbus Council No. 4567 Kohl’s Department Stores George & Jutta Kohn
Laura A. Krietemeyer Mark & Sherry Kronenfeld Robert & Jeri Krueger Kruger Jewelry Co., Inc. of Austin Carol D. Kulluk Liang Kung & Jane Chiang Lin Murray & Lee Kushner Marshall Kutz Amy Kuzdowicz Lawrence & Anita LaBarbera Chris Labelle Doug & Melissa Labelle Family Foundation Dana Labes Rocco Laginestra Robert & Tonya Lambert Melissa Landau Mickey & Linda Landis Landon Outreach Foundation David Lang Langan Engineering & Enviromental Services, Inc. Noel & Trish LaPorte Steve LaPorte Jason & Kimberly LaRose Last Call Operating Co. I, Inc. Cheryl Lau
Margaret Kohn Leonard & Denise Komoroski Mark & Carrie Korth Michael & Linda Kowalik Krabby Painters Inc. Kramer Levin Naftalis & Frankel, LLP Kramer Portraits
Douglas Lautner Sarah Le Clerc Lead Intelligence, Inc. John & Edyth Ledbetter Ronald & Debra Lederman The Ed Lee & Jean Campe Foundation, Inc. L. Lee & Carole Hodges
D O N O R S P OT L I G H T: Gilbert Family
Michael Lee Daniel Leedy Richard & Sarah Lefevre Marcel Legrand Anthony & Lauren Leotti William & Marcella Lerner Doreen Heremelin & Mel Lester Matthew & Nicki Lester Cooper Levenson, P.A. David & Nancy Levi Diane Lederman Samuel Levin I. Buddy Levine Wendy Levine Levine Builders Inc. Levittown Swimming Association, Inc. Lawrence & Michelle Levy Matthew & Stacy Levy Edward C. & Linda Dresner Levy Foundation LexisNexis Sean Lickver Brenda & Brian Limshan Steve & Samantha Linden John Line
Christopher Linthwaite Paul & Yael Lipof Elliott & Allison Lissner Mary Ann & Michael Liut Loco Cycle Marshall R. Loeb Loeb Enterprises II LLC Lombardi’s Harley-Davidson
Stephen & Catherine Lorberbaum Karen Loussia Loyal Order of Moose Manchester Richmond Lodge #699 Josh Luber Alan Lucas Brendon & Kirstin Lynch Macy’s & Bloomingdale’s Kevin Maguire Mary Mahrer Main Street Bank Russell Makowsky & Melanie Katzman Fabio Malaver Kelly Malone The Mandelbaum Foundation Robert & Nina Manger Manitoba Neurofibromatosis Support Group Eric & Betty Mannes The Mannik & Smith Group, Inc. Mansfield Oil Guy Manuel & Linda Goldstein Scott & Jennifer Marks Marks Paneth & Shron, LLP The Mars Agency - Mercury Promotions Marsh & McLennan Agency, LLC Ginger Marshall David Martin Kody Martin Cecilio Martinez Patrick Martinez Massachusetts State Council Knights of Columbus Charity Fund Massana Massey Services, Inc. The Mayflower Grace Hotel Julie Mayrant John Mazur Robert & Kim Mazur MBK Senior Living, LLC Nirja McCarthy Rebecca McDonald Sia Mcdonald John & Nancy McFeeley McGlinchey Stafford, PLLC Scott McIntosh Bridget Mckeon Fred & Elizabeth McLeod Nonie McMahon The McMichael Family Foundation John McNamara Paul McSweeney Rodrigo & Luz Mejia
Mendenhall Flying Lions Charities, Inc. Jane Mendez Merced Elks Lodge Mercer (U.S.) Inc. Philip Mercurio Meridian Realty Advisors, LP Metro Management Development Co. Metro Theaters Metropolitan Real Estate Group, LLC Metro-West Appraisal Co., LLC Frederick & Mary Meyers The MHE Foundation Darren & Marianne Mick MIG Construction James & Anita Miles John & June Miley George Milian Mill Creek- Mineola Millenium Recycling, LLP Deborah Miller Richard & Margaret Miller Richelle Miller Joann Miyamoto Frederick & Shelley Molineux Angela Moody Terrence Moore Morgan & Morgan, P.A. Elycia Morris John & Beth Morris Don Morrison The Billy & Clara Mosing Foundation Motor City Office Solutions Movado Group, Inc. Bill Moyssiadis Mozingo Construction, Inc. Mr. Greenjeans Produce Inc. Stacey Mullins Chip & Cindy Murphy Michael & Miriam Murray John Nabholz Sarah Jordan & Suresh Nagappan Delio & Helen Napoli Stuart & Jo Ann Nathan Josh & Julie Nathanson Nationwide Mutual Insurance Company NCP Solutions, LLC William & Rita Needel Larry & Pat Nelsen Linden & Michelle Nelson Network Designs, Inc Timothy & Marti Neumann Celeste Van Uden Neville New Forum Training New York Yankees Jerry & Frances Newberg
Dan & Jennifer Gilbert
Dan & Jennifer Gilbert
A playful time was had by more than 1,500 attendees at the third annual Detroit beNeFit, “A Playdate to End NF.” Hosted by esteemed CTF patrons Jennifer and Dan Gilbert, “The beNeFit” was held in November at the Cobo Center in Detroit, Michigan, bringing in a record $5.2 million for NF research. The numerous supporters who came out to play were invited to “wear your dressup clothes” and enjoy a night of “drinks, dinner, and afterglow.” Presented amid giant toys and a cartoon cityscape, the evening’s entertainment included silent and live auctions. Among those in attendance were many business leaders and most of the 2016 NBA Championship Cleveland Cavaliers. Dan and Jennifer are parents to NF Hero Nick Gilbert, and they created “The beNeFit” in 2013 as an inspirational annual extravaganza to raise funds and increase awareness of NF. The Gilberts’ hard work, dedication, and vision have translated into nearly $11 million raised in three years for the Children’s Tumor Foundation. Thank you, Dan and Jennifer for your unending support!
Eileen Newell Michael & Judy Newell Mark Newlands Harvey & Joan Newman Jacqueline Newman News America Marketing The NF Team Foundation Leo Nicolini Mark & Jeanne Nielsen Nissan of Burleson Kevin Nixon
Craig Noble Ryan Noble Stephanie Nogueira Jeffrey & Constance Noiva Tom Nolte Nordson Corporation James & T. Gail Norman Victor Norris Jeanna Nuss The Oak Grove PTA David & Karen O’Brien
ANNUAL REPORT 2015
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withThanks R. Wayne & Emily Ogozaly Ohio Valley Porsche Club of America Richard & Caroline Olgee John & Cathy Olszewski Joe Oltman Barbara Oosterwyk Organization for Autism Research Michael Ortiz Connie & Lesley Oslica Our Lady of Grace Catholic School John & Diane Owens Lisa Oyen George & Sandra Pace Lloyd Pace Lizbeth Pagan Cherie Page Pak’s Karate Academy of Mandarin Jim Palmer Ronald Palmese Matthew Parker Ralph & Lisa Pascucci Ruth Pash Patagonia, Inc. Nicholas & Josephine Pedone Roger & Kathy Penske The Pepsico Silicon Valley Comunity Foundation Shannon Perez Perfect Touch Painting Anthony & Laura Perfetti Leigh Perkins Perkins Coie Trust Company Bruce Israel & Lisa Pernick Perrigo Company Foundation Alison Peterson Don Pfeifer Pfizer Foundation Erik & Robin Phelps Melody Piazza Starr Piner Zach & Michelle Piner Jeffrey & Emily Pitt Pleasant Valley School District John & Kristine Poirier Police and Fire Federal Credit Union Ralph & Ann Pollack The Nancy C. Pollard Charitable Fund Evan Pontz Craig & Sarah Pope Michael Popovic Portofino Restaurant Inc. Premier Creative Group Prestige Care, Inc. Paul & Angel Price Principal Financial Group Foundation, Inc. 26 |
ANNUAL REPORT 2015
Andrew & Denelle Pritchard Kevin & Kathryn Prokop Property Markets Group, Inc. Publicis LifeBrands Evolvr Bill Pulte Amanda Pylate George Pyne Quest Diagnostics Howard Rachlin Randall-Paulson Architects, Inc. Eric Randolph Brian & Pat Ratner Noah & Kristy Ravenscroft Kristin Rawl Andrew & Heather Rayburn Judith & Donald Rechler Foundation Trent Redden Mike & Sandie Redfern Reed Smith, LLP The Dale L. Reese Foundation Michael & Gayle Regan Regional Appraisal Assocation, Inc Daniel & Joan Reilly Reliant Holdings, Inc. Mary Renna Stephen Repsher & Kathleen Willcox Republic Finance, LLC Reynolds Family Foundation RFI Construction Management, Inc. Melvin & Patricia Rice Robyn Lowery Richardson Richmond University Medical Center Anne Riesbeck Ritchie Bros. Auctioneers, Inc. Robert Rivenburgh Charles & Donna Robb Alan & Jerye Ann Robbins Norman & Bettina Roberts Foundation, Inc. Jared Roberts Jeff Robertson James & Barbara Robinson Jaylynn Robison Rock Box Rock-Pond Solutions Mitchell & Elizabeth Rodbell Luis Rodriguez Florence Roffman Phil Rogacki Kelli Rogan Robert & Pamela Rogan Barry & Jody Rogow Tom Roland & Betsy Pfeffer Gerard & Alice Marie Rorke Kathryn Rose Eleanore Rosenberg
Laurence & Lori Rosenberg Roslyn High School Gloria F. Ross Foundation, Inc. Kurt Ross Toni Ross George Rosser Matthew Rossetti Robert Rostron Rota Portrait Design
Michael & Melanie Rothenberg Ronald & Carol Rothrock Jean Rothschild Charles & Diana Rothstein Julie & Adam Rothstein Ronald & Ursula Rottloff The Patrick Michael Rubin Scholarship Fund, Inc. Nicholas Rudd Kenneth C. Rudd, Esq. Kurt & Lucia Rueckel Mary Ruggeri David & Cindy Rulon Edward Russnow Dan & Julie Rutter Marcia Ryan SaalGood Todd & Karen Sachse Sachse Construction Sacramento Adventist Academy Safety Insurance Saks Fifth Avenue The Salesforce.com Foundation Susan Salpeter Smita Sampath Ross & Maryann Sanders Sanford Medical Center Fargo William & Christina Sargent Arnab Sarkar SBC Hospitality Ministry Dick & Carolan Scanlan Andrew & Amy Schafer Ethan Schapira & Dacia Cocariu Richard & Linda Schaps Robert & Bluma Schechter Michael Scherl Scott Schultz
D O N O R S P OT L I G H T: Flashes of Hope
Allison Clarke
Flashes of Hope Charles Schwartz & Cathy Sosnick Schwartz Daniel & Roxanne Schwartz Sandra & Alan Schwartz Celine Scott George Scott Doug & Katie Seabolt Securitas Security Services USA, Inc. Scott & Michelle Segal Brian Sekel SEKO Logistics James Sesic Herbert Setlow Family Fund John Kiczek & Christine Seuffert Arthur Shannon Maureen Shannon Colin & Anne Shaw John & Susan Sheerin Dong & Lisa Shen Melissa Shepard Kathryn Shepich Andrea & Roger Sherr David Shipman Joel Shulman Philip & Judith Shwachman Muriel F. Siebert Foundation David Sigel The Signature B&B Companies The William and Sylvia Silberstein Foundation, Inc. The Silicon Valley Community Foundation Mark Simmons Craig & Cheryl Simon Michael & Linda Simon J. Bradford Sims Alan & Jan Sipe
Chad Sivcovich Melanie Sizemore Graham Skidmore The Skillman Foundation David & Tara Skirzenski Dan Mullen & Linday Sklar Rolly Slatt Randy Sloan & Sasha Match Sloan Cecilie & Owen Small Kevin Small Timothy Smallman Christopher Smith Helen & Randy Smith Jackie Smith John & Sabrina Smith Reed Smith Travis Smith Smith Seckman Reid, Inc. Snell Prosthetic & Orthotic Laboratory Richard & Gail Sobel Susan Sosnick Southeastern Construction & Equipment Co., LLC Southeastern Protection Services, Inc. Michael Spadaro Orietta Spagoletti Jamie Spann H. L. Spears Adam & Rani Speck Scott Stackman Robert Starnes Gordon & Nancy Starr Staten Island University Hospital Steamfitters’ Local Union 420 Esta Eiger Stecher
Todd & Nicole Steinert David & Dianne Stern Lynn S. Stern Scott & Lisa Stern Steve Landers Chrysler Dodge Jeep Nathan Stewart Quentin & Claire Stiles James & Judith Stillwell Betsy Rawson & John Stone Martin & Mary Ann Stone Stephen & Christine Stout Stout Insurance Brokers, Inc. StreetLinks, LLC John M. Striker Strong Porsche Studio City Chamber of Commerce Robert & Arlene Subin Suffolk Transportation Service, Inc. Summer Solstice Foundation, Inc. Sutherland Global Service, Inc. Ray & Debra Swafford Donald & Susan Swift Synergy Fitness Concepts SYSCO Food Services of Central Florida Stephen Szachacz Taco Casa Talaga Construction Pete & Lynn Tanguay The Frank & Mary Ann Tataseo Fund David & Rasheena Taub Marc & Ronna Taub Sheldon & Andi Taub Lynda Taylor Taylor Corporation
Quicken Loans Arena transformed into Motown last November, as the Cleveland Cavaliers and Flashes of Hope welcomed 1,000 guests for the 2015 Big Shots and Little Stars fundraiser. The annual event benefits Flashes of Hope and the Children’s Tumor Foundation. Allison Clarke, founder of Flashes of Hope, and Dan Gilbert, CTF Board Member and majority owner of the Cleveland Cavaliers basketball team, kicked off the evening. The highlight of the night was the runway show. The Cavaliers roster was joined by other “Big Shots” from the Cleveland business community, who escorted their “Little Stars” – pediatric cancer survivors – down the runway. Flashes of Hope is a nonprofit organization that raises funds to accelerate a cure for children’s cancers while honoring the unique life and memories of every child fighting cancer. Thanks to the Big Shots and Little Stars event, Flashes of Hope made a donation of $600,000 to the Children’s Tumor Foundation, which will go toward critical research into malignant peripheral nerve sheath tumors. The Children’s Tumor Foundation extends our utmost thanks to Kip and Allison Clarke, Dan Gilbert, and the Cleveland Cavaliers, to all the Big Shots and Little Stars, and to Flashes of Hope for their continued support in funding NF research.
ANNUAL REPORT 2015
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withThanks Taylor Farms Pacific Temple Israel Judy Tenenbaum Jordan Teramo Texas de Brazil Texas Health Huguley Hospital Texas Industrial Scrap Iron & Metal Jess Thomas Thomas Sebold & Associates, Inc. Chris Thompson Kenton Thompson Robert Thompson Todd & Elisa Thompson The Thompson Foundation Alesia Thon The Tim Tebow Foundation, Inc. Paul & Claudia Timko Gabrielle Tiven Thomas & Lauren Tobin Robert & Felicia Tokarczyk Kristin Tol Louise & Daniel Tomala Glen & Judie Tomaszewski Gary Torgow Joshua Trotta Troutman Sanders, LLP Anne & Larry Trussell Tulsa Downtown Lions Club Adam & Sarah Turner Turner Construction Company Foundation Alyssa Tushman Herbert & Grace Tyler The University of Alabama at Birmingham UAMS - Winthrop P. Rockefeller Cancer Institute
Joseph & Kate Uberti Brian Uerkwitz Ultimate Parking Management, LLC Ultimate Software, Inc. United Parcel Service Universal Business Solutions, Inc. University of Kentucky University of Michigan University of Virginia Unum Group Upper Dublin High School Student Government Association UPS Foundation, Inc. Wayne & Mary Ann Upshaw Jalsa & Bion Urubshurow Utah Audiology & Hearing Stacey Utley Jeff Uttz Dan & Becky Vacanti Mattie & Mark Vadon Van Andel Research Institute Dalia Vasquez Jason Vaughn Vaughn’s Inc. of Pensacola V-Cole Enterprises, Inc. Jeffrey Veatch VECA Electric Mattie T. Vega Venue Solutions Group, LLC Ena Verdi Vestavia Indian Princess - Tonkawa John Vicari Bill Vickery David & Kelly Victor Juanita Victor Sam Vida David & Barbara Viskochil
“ NF may currently have no cure, but that doesn’t mean there is no hope. I fully believe that I can still achieve my life goals and dreams, albeit on a different timeline than what I had originally envisioned. I may have NF, but NF doesn’t have me.
”
— Nora Wade, who lives with NF
28 |
ANNUAL REPORT 2015
Andrea Vittorelli & Sukwan Han The VMware Foundation Marilyn Vogel The Vogel Schwartz Foundation Wachtell, Lipton, Rosen & Katz Jason & Katy Wakin Bill & Toni Waldrop The Waldrop Family Steven & Lottie Walker Family Foundation Christian Walker Nate Walker The Walmart Foundation Richard & Carol Walsh Tom Walters Walton Street Capital, LLC Catherine Ward Dan Ward Mark & Kate Ward Derek Warden & Margaret Laudise Waterford Kettering High School Aaron Watkins Jennifer Watson Todd & Jill Watson Gerald & Sue Watts The Wawa Foundation, Inc. Webasto-Edscha Cabrio USA, Inc. Evana & Roger Webster Max & Kelley Wegner Bruce Weider & Laurie Fletcher-Weider
Chad Weinbaum Michael Weiner & Danielle Horvitz-Weiner Howard Weingard Aaron Weitzman Jason & Kristin Wells Howard Werner Joe & Beth Werner Paul & Patricia Werner David & Vicki Wess West Jordan Bikram Yoga Westchester Group Investment Management Shirley & Bill Westendorf Donna & Frederick White Mike & Ann White Kathlen Whitney Jim Wikel Kenneth Wile & Janet Ganio-Wile Zygmunt & Audrey Wilf Foundation Louis & Roberta Williams Peter Williams Walter & Kathleen Williams Robert & Pamela Willis Robert Willis Andrew Wilson
Emily Wilson Jacqueline Wilson Peter Winston Matthew Wise Gregg & Beth Wolpert Howard Wolpin Wolverine Solutions Group Women Run Arkansas Wonderful Giving Wrightson, Johnson, Haddon & Williams, Inc. Andrew B. Wrublin Eric & Christine Yamada Yancey Bros. Co. Mary Yarmuth William Yarmuth Bonni Yates Leo Yen Jarrod Yuster Zeichner Ellman & Krause, LLP Thomas Zeifang Mitchel Zelman Leonardo Zica Mitchell Ziets Robert C. Zinnershine Mark Zionkowski Ziva Meditation Uzi Zucker
Board of Directors Linda Halliday Martin, Chair Rachel B. Tiven, Vice Chair Randall Stanicky, Treasurer Tracy Galloway, Secretary Bruce R. Korf, MD, PhD, Chair, Medical Advisory Committee Stuart Match Suna, Chair Emeritus Connie Sorman, Volunteer Leadership Council Chair Daniel Altman Laura Ganio Bona Robert Brainin William Brooks Suzanne Earle Daniel Gilbert John Golfinos, MD Brendan Hanrahan, PhD Matthew Hay Chad Leathers John McCarthy Steven L. McKenzie Lesley Oslica Laura Perfetti Kenneth Rudd Karl Thomson Dave Viskochil, MD, PhD Nate Walker Peggy Wallace, PhD Honorary Directors Richard A. Horvitz Michie Stovall O’Day Alan Robbins, MD Carolyn E. Setlow Ed Stern Pro Bono Counsel Allan Rubenstein, MD, Director of Medical Affairs Emeritus Medical Advisory Committee Bruce Korf, MD, PhD, Chair Jaishri Blakeley, MD, PhD Karen Cichowski, PhD Suzanne Earle Tracy Galloway Peter Linsley, PhD Michael Morin, PhD Marco Nievo, PhD Roger Packer, PhD Scott Plotkin, MD, PhD Stuart Match Suna Ed Stern Dave Viskochil, MD, PhD Peggy Wallace, PhD
Foundation Staff Annette Bakker, PhD, President and Chief Scientific Officer Reid Horovitz, Chief Operating Officer and Chief Financial Officer Research and Medical Programs Salvatore La Rosa, PhD, Vice President, Research and Development Maria Carela, Grant Manager Vidya Dhote, PhD, Basic Science Manager Kate Kelts, Patient Support Coordinator Pamela Knight, Clinical Program Director Hyerim Lee, PhD, Transitional Science Project Director Patrice Pancza, Program Director, Research Heather Radtke, NF Clinic and Symposium Coordinator Sarah Rosenberg, Executive Assistant Development and Community Relations Michael Divers, Vice President, Development Melissa Sosa-Longo, Vice President, Major Gifts Jill Beck, Program Director, Racing4Research Jessica Beckerman, NF Walk Development Manager Allison Cote, Regional Development Manager Emily Crabtree, Program Director, NF Endurance Rebecca De Ornelas, National Manager, Special Events Paul Dranginis, Director, Major Gifts Angela Dumadag, NF Endurance Manager Angela Earle, NF Endurance Manager Adam Gracia, Regional Development Manager Lolita Jerido, Regional Development Manager Kelly Mills, Regional Development Manager Julie Pantoliano, Regional Development Manager Kristine Poirier, Director, Regional Development and NF Walk Kim Robinson, Regional Development Coordinator Traceann Rose, Director, Community Building and Patient Engagement Mary Vetting, Stewardship Manager Lauren Walsh, NF Endurance Manager Finance and Administration Catherine Blessing, Human Resources Director Sarah Bourne, Director of Finance Monique Boucher, Gift Processing Manager Albert Diaz, Director of IT and Salesforce Administration Margaret Flaccamio, Fulfillment Coordinator Keena Hutchinson, Gift Processing Coordinator Latisha Maxwell, Gift Processing Coordinator Danielle Meyer, Technical Support, National Programs Carey Milligan, Accountant Rosa Amelia Perez, Project Administrator Marketing and Communications Simon Vukelj, Vice President, Marketing and Communications Alissa Marks, Marketing Manager Susanne Preinfalk, Design Director Rebecca Harris, Public Relations Manager Vanessa Younger, Communications Senior Manager Staff list as of 8/30/2016
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