Children's Tumor Foundation 2017 Annual Report

Leading the Way A N N U A L R E P O RT 2 0 1 7

contents

3 Letter from the President 4 Leading the Way 6 Attracting Pharma 8 Driving Collaboration 10 Fueling Innovation 12 NF Conference 14 Sustaining Hope 16 Raising Awareness 18 Raising Funds 20 Advocacy 21 NF Ambassador 22 Financial Summary 24 Donors

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.

Founded in 1978, the Children’s Tumor Foundation (CTF) began as the first grassroots organization 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 innovative research endeavors.

Our mission Drive research, expand knowledge, and advance care for the NF community.

Our vision End NF.

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Annette Bakker with NF Hero Jack Burke, of CureNFwithJack

“

I really feel that NF patients are simply UN: UNdaunted in your UNcommon courage. UNbeatable in your UNsurpassed ability. UNbreakable in your spirits. And UNaccepting of the status quo. To end NF we need that UN attitude.

”

— Annette Bakker, PhD, upon accepting a 2017 Rare Champion of Hope Award from Global Genes for notable efforts in science 2 |

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Dear friend,

As 2017 came to an end, the Children’s Tumor Foundation entered its 40th anniversary year, and began a celebration of our history of progress, leading the way to find treatments for neurofibromatosis (NF). Through the relentless work that CTF researchers have been doing, those living with NF can look forward to a better life. In this report of CTF’s 2017 accomplishments, you will read of groundbreaking progress and vital new partnerships. My hope is that you will be inspired to believe along with me—we can end NF. On so many fronts, CTF-funded research is making great strides for NF. Our focus is on promoting collaboration and breaking down the barriers that hamper progress, with a goal to shorten the length of time it takes to develop effective treatments. Synodos for NF2 completed its third year with a significant data release and an extremely promising treatment candidate for NF2. Our first industry partnership became a reality and we are expanding to many more.

Even more exciting, 70% of patients enrolled in the clinical trial of the MEK inhibitor selumetinib at the National Cancer Institute are seeing their tumors shrink by 20-50%. The images of the NF Heroes who are participating in this trial speak for themselves; their young lives have improved, both visibly and physically. The MEK trial has been revolutionary, and throughout 2017 and into our current year, our eyes are trained upon our bold goal of 100% tumor reduction in 100% of patients. We are overjoyed by the incredible news from AstraZeneca and Merck that selumetinib has attained orphan drug status from the FDA. We are closer than ever to the first FDA-approved treatment for NF! The impact of your generosity is astounding. Your faith in the work we are doing propels us forward and fills us with purpose. Thank you to all those who support this fight in so many ways—through fundraising, volunteering, planning, donating, or advocating. Together we are changing the lives of NF patients, and the future of NF research.

Our vision to end NF continues with ever-increasing passion. We have come so far, and as we continue along this crucial path, I am confident that we will fulfill our mission. It is because we bind ourselves together as a united front of researchers, volunteers, parents, donors, and patients, that we will lead the way.

Gratefully,

— Annette Bakker, PhD, President and Chief Scientific Officer

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leading the way

At the Children’s Tumor Foundation, we’re working to better the lives of over 2.5 million people who live with NF. And we’re doing so by focusing on the tagline in our name –"Ending NF Through Research.” We envision a day when NF patients can live their lives free of the pain and difficulties that come with NF, and that day is on the horizon because of our innovative team-based approach to drug development.

Patients are told to “watch and wait” to see if their tumors will grow, and determine later if it might impact their lives with devastating conditions such as malignant cancer. We don’t think that’s fair, and we don’t think that’s necessary. By bringing together the brightest minds in research and industry, and revamping the systems that often slow the pathway to treatments, we can change “watch and wait” to “here’s what you can do.”

And the best part? CTF’s research model not only benefits NF patients, but also the millions of patients living with cancer, or one of the 7,000 rare diseases in existence.

We’re in a rush to find treatments for patients.

Join us as we revolutionize how treatments are developed for those who need them most.

TRADITIONAL RARE DISEASE MODEL PATIENT TREATMENT Why it takes this long and costs so much?

▪ Patient manifestations unclear ▪ Clinical trial recruitment can be slow ▪ Disconnect between discovery and treatment ▪ Silos mean that experts are isolated ▪ Time delays in reporting

NEW CTF RESEARCH MODEL PATIENT

TREATMENT

Why are we faster?

▪ NF patient registry accelerates patient recruitment ▪ Team science connects discovery to treatment ▪ Open NF datahub for real-time data release ▪ Preclinical platform speeds up drug testing ▪ Key opinion leader network speeds up decision making 4 |

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GOAL: Double the speed for half the cost!

COST: Hundreds of millions of dollars

MEK makes a difference Over 70% of enrolled patients with plexiform neurofibromas saw decreased volume of at least 20-50% in these inoperable tumors, a first in NF research. This highly successful study is the result of the Children’s Tumor Foundation’s major investment in the team-science approach of the NF Preclinical Consortium. This MEK trial success has been published in the prestigious New England Journal of Medicine, and is on track to be NF’s first approved drug.

NF HERO: Philip Moss

50% shrinkage

BEFORE

AFTER

NF HERO: Paige Doane

32% shrinkage

BEFORE

AFTER

NF HERO: Ryker Bennett

40% shrinkage

BEFORE

AFTER

NF HERO: Jane Constable

30% shrinkage

BEFORE

AFTER

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attracting pharma

The Children’s Tumor Foundation provides answers to the questions that pharmaceutical companies are asking in order to invest in a rare disease such as NF.

Are teams of scientists working on this problem?

CTF’s Synodos Team Science initiatives Designed and managed by CTF, a diverse team of experts collaborate, participate, and immediately share all raw data in an NF Data Portal. By working together instead of in silos, we increase the efficiency of solving complex NF problems.

Where do we find experts?

CTF’s Key Opinion Leader Network This expert network of specialists helps to guide drug discovery and development in order to increase scientific and clinical quality in decision making.

Are there enough treatment centers?

The CTF NF Clinic Network is connecting doctors and improving care A growing network of CTF-affiliated clinics is cultivating relationships between patients and doctors, and working to standardize and improve NF patient care.

Where can we find the patients to participate in clinical trials?

The NF Registry connects patients to clinical trials This patient-entered registry is structured to accelerate clinical trial recruitment, and fuels knowledge and understanding of the diversity of NF manifestations.

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How can we standardize the endpoints of clinical trials?

The REiNS Consortium (Response Evaluation in NF and Schwannomatosis) is establishing approval criteria This worldwide consortium develops new clinical trial designs, and works with the FDA to establish drugapproval criteria for NF.

Where can we find new drug targets?

The NF Data Portal stores open data Through our partnership with Sage Bionetworks, data is available and ready to use in the NF Data Portal. This centralized data repository is managed by specialists who collect, analyze, and release integrated data, accelerating the understanding of NF and the identification of "druggable" targets.

Have these drugs been tested in animal models?

CTF’s NF Preclinical Initiative has established novel targets for clinical trials Because early testing of innovative concepts is vital, CTF has invested in teams of top laboratories with NF-relevant animal models, bringing promising drug treatments to the clinic quickly and efficiently.

Is there enough tissue available for testing?

The NF Biobank provides tissue for research

“

In order to solve the problem of a scarcity of relevant tissue to test, CTF created a centralized library of openly available samples for biomarker discovery and development, to support all aspects of drug research.

The Children’s Tumor Foundation [has a] knack for identifying and securing highly qualified participants with widely varied, but complementary, expertise.

Even more remarkable is the commitment of each to the goal of developing cures in the shortest possible time.

”

— Webster Canevee, PhD D irector of Strategic Alliances in Central Nervous System Cancers, Ludwig Institute for Cancer Research ANNUAL REPORT 2017

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driving collaboration

The Children’s Tumor Foundation’s team science projects are leading the way in NF research and accelerating the drug development process.

Synodos: CTF’s Premier Research Model The Children’s Tumor Foundation assembles “dream teams” of doctors, scientists, and patients who work together to solve complex problems faced by NF patients, who drive the topic of Synodos collaborations. Data is analyzed by our partners at Sage Bionetworks, and then made available to all Synodos members, and shortly thereafter, to the rest of the world via CTF’s NF Data Portal. This approach is expanding interest in NF research to other research areas, including cancer.

Synodos for NF1 Synodos for NF2 The first of the Synodos models established

by CTF, Synodos for NF2 was launched in 2014 to provide clarity to patients about available drug options for NF2.

This consortium of multidisciplinary investigators from 12 world class labs and medical centers performed rigorous drug testing that laid the groundwork for clinical trials to test a promising new compound for the treatment of NF2.

CTF sought out feedback from NF1 patients when establishing Synodos for NF1 in the spring of 2016.

Patient concerns for better treatment options for NF1, as well as the search for answers for lowgrade glioma patients, prompted CTF to initiate three separate consortia, bringing together 24 investigators from eight leading institutions and two companies. Two teams form a Preclinical Acceleration component, each focusing on the development of a swine model to closely resemble a human’s response to a potential treatment. The third Synodos for NF1 team is working to develop treatments for low-grade glioma, the most common childhood brain tumor affecting children with NF1.

Synodos Network Meeting Over 70 researchers, clinicians, patients, staff, and other experts gathered in Florida for the first Synodos Network Meeting, hosted by CTF and supported by the Jin Hua Foundation. The theme of the meeting was Synodos: The Art of Ending NF, and included the vibrant artwork of Synodos patient advocate and former NF Ambassador Jeffrey Owen Hanson. This was the first joint gathering of key leaders from all Synodos initiatives, and it provided a unique opportunity to share research updates and exchange views on specific Synodos-related matters.

Synodos for Schwannomatosis An international consortium of clinicians and scientists from multiple disciplines met in Toronto, Canada in May of 2017 to officially launch Synodos for Schwannomatosis, based on the successful Synodos model. The project is performing an extensive molecular analysis of schwannomatosis tumor samples to identify new therapeutic targets, and advance the understanding and management of the disease, with a special focus on pain.

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“

NF Preclinical Initiative The NF Preclinical Initiative (NFPI) began in 2008 as the NF Preclinical Consortium (NFPC), a five-year, $7 million program that concluded in 2013. The NF Therapeutic Consortium (NFTC) continued the work of the NFPC, building on its infrastructure and discoveries. Traditionally, it takes up to 16 years and costs hundreds of millions of dollars to translate a new discovery into one clinical treatment. The impact of the NF Preclinical Initiative is clear: these teams completed 116 preclinical trials in 8 years for a total cost of $11 million. The preclinical studies led to 16 clinical trials that are currently under way; one of those clinical trials is the MEK inhibitor selumetinib registration trial, in which patients are seeing significant shrinkage in the size of their tumors (read more below).

“

“

After Jane was diagnosed, when I would hear people say that they were hoping for, or working toward, a cure for NF, I was skeptical. As a physician, I knew how complex NF was. . . .

In my heart I hoped for effective treatments for NF, but didn’t believe that there would ever be a cure. The MEK trial has changed my outlook.

— Kristina Rath Mother of NF Hero Jane

”

MEK Inhibitor Selumetinib Registration Trial

After the [Synodos for Schwannomatosis] meeting today, I feel that we’ve assembled a total dream team of people who are highly dedicated to making something happen by working together.

”

—Richard A. Horvitz CTF Board of Directors Chair and Synodos for Schwannomatosis Patient Advocate

Over 70% of the patient participants in a clinical trial of the MEK inhibitor selumetinib have seen a reduction of 20-50% in their inoperable plexiform neurofibromas.

A registration trial such as this is the final step before FDA approval. Brigitte Widemann, MD, of the National Cancer Institute, reported at the Foundation’s 2015 NF Conference that response data in this trial for children and young adults showed meaningful decreases in tumor volume. This highly successful clinical study is the result of CTF’s NF Preclinical Initiative, which demonstrated that MEK inhibitors have a massive result on the volume of these tumors.

Orphan Drug Status The Food and Drug Administration (FDA) has granted Orphan Drug Designation for selumetinib, a MEK inhibitor, for the treatment of NF1. The news that the FDA has provided orphan drug status illustrates not only the potential of this treatment, but provides further incentives for drug companies to invest in NF-related trials.

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fueling innovation

CTF funding of NF research leads the way to better diagnostic criteria and improved clinical care.

TESTING CONCEPTS Drug Discovery Initiative Award (DDI) The DDI Award program supports in vitro (cell) and in vivo (animal) studies of earlystage testing of candidate drug therapies for the treatment of all forms of NF. Four DDI awards were granted in 2017, which include projects that target therapies for NF1-related malignant peripheral nerve sheath tumors (MPNST), neurofibroma growth, NF2-related schwannomas, and to screen drugs against NF1 and NF2 cell lines.

LEARNING MORE The Young Investigator Award (YIA) The YIA is the Foundation’s oldest research award program and serves to advance understanding of the biology of NF1, NF2, and schwannomatosis, and works to bring young researchers into the NF field. This award program is one reason the understanding of NF has grown so rapidly during CTF’s 40-year history. For the 2017 grant cycle, two YIAs were granted to postdoctoral students whose projects focus on NF1 tumors. The NF Research Initiative (NFRI) and David Miller, MD, PhD of Boston Children’s Hospital are funding the 2017 awardees.

DELIVERING TO PATIENTS Clinical Research Award (CRA) The Foundation’s Clinical Research Award program supports early-stage NF research involving human subjects. These awards encourage studies of candidate therapeutics or other treatment interventions, clinical-trial-enabling or ancillary studies, natural history studies, and investigations into clinical care in NF.

SCIENTIFIC TRANSPARENCY Drug Discovery Initiative Registered Reports (DDI-RR) In 2017, CTF introduced a rigorous new way of reviewing and funding projects. Through a collaboration with top scientific journal PLOS ONE, in a new process known as “Registered Reports,” awardees are offered financial support by CTF and in-principle acceptance for publication by the journal. This model will allow for more rigorous, reproducible, and transparent science, guaranteeing its awardees publication, regardless of study outcome.

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BIOBANK Body and Tissue Donation Program OPG Multicenter Study The Children’s Tumor Foundation and the Gilbert Family Neurofibromatosis Institute have collaborated on a five-year study of optic pathway glioma (OPG) in children with NF1. The study involves 25 NF clinics, and aims to provide NF clinicians with clear criteria that will help them decide when a patient should be treated, and when treatment (such as chemotherapy) should be avoided. OPG develops in 15 to 20% of children with NF1. Although rarely life threatening, these tumors can cause significant health issues, including vision loss, disfiguring bulging of the eye, and early puberty.

“

Originally set up to collect dermal neurofibroma surgical samples, the CTF Biobank has broadened its scope to collect tumors, nerve, bone, and other tissues postmortem from NF1, NF2, and schwannomatosis patients.

The tissue comes from people who previously request that CTF arrange for them to donate their bodies to research after death. CTF’s procedure for body donation will ensure that NF1, NF2, and schwannomatosis tissue be made widely available, promising to speed up treatment development.

I believe my work, supported by the YIA, will shed light on the cell-cell communication network within NF and MPNST, which will ultimately help in designing new therapeutic strategies against these devastating diseases.

—Lai Man (Natalie) Wu, PhD C incinnati Children’s Hospital Medical Center, 2017 Young Investigator Awardee

”

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NF Conference

Doctors, clinicians, patients, and researchers gathered in downtown Washington, DC for CTF’s annual 2017 NF Conference.

Approximately 400 people were in attendance, which is nearly 25% more than the previous year, making it the largest NF Conference thus far.

President of the Biden Cancer Initiative Greg Simon joined the 2017 NF Conference as Keynote Speaker at the Welcome Dinner, held at the historic National Press Club. Simon spoke on the important topics of research collaboration and breaking down barriers to research progress. Greg Simon’s relationship with the Foundation began when both he and CTF President Annette Bakker, PhD, attended the Cancer Moonshot Summit at the invitation of former Vice President Joe Biden. Simon was then serving as the executive director of the Cancer Moonshot Task Force.

“

I’m here to thank you for getting it right and for getting it right so soon in your life as a Foundation. And to thank you for giving people hope. The kind of hope that says, we’re going to get it done . . . and take chances to cure NF. The kind of hope that’s backed up by years of work, by thousands of patients putting their lives on the line, and by . . . all the people in the Foundation who are willing to take the risk to help [those with NF] live a long and healthy life.

”

— Greg Simon President of the Biden Cancer Initiative, to the attendees of the NF Conference

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publishing spotlight

“

Throughout the year, articles highlighting CTF’s business model, research platform, and collaborations appeared in numerous publications, including PLOS ONE, OutsourcingPharma.com, and EMBO Molecular Medicine, among others.

CTF-funded research led by Ludwine Messiaen, PhD, of the University of Alabama at Birmingham was published in the American Journal of Human Genetics. Dr. Messiaen has a long-standing interest in genotype-phenotype correlations and has identified NF1 mutations (genotype) and associated symptoms (phenotype) in over 8,100 unrelated NF1 individuals. CTF awarded Dr. Messiaen the Isaac and Sadie Fuchs Genotype-Phenotype Grant in order to facilitate the discovery of additional NF1 genotype-phenotype correlations, which will help guide clinical management and genetic counseling in this complex disease.

If a genotype-phenotype correlation exists for a particular mutation, it will help these families have some perspective of what the future will bring, and it will help families cope with the disease.

”

— Ludwine Messiaen, PhD of the University of Alabama

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sustaining hope

“

Throughout this journey, I have drawn strength and inspiration from the many NF families I have met.

This has empowered me to contribute my knowledge and wisdom of living with NF to the NF research community. NF is too much for anyone to take on alone, and NF Symposium it is only through collaboration that An NF Medical Symposium is a one-day, we will find a way to end NF. local or regional conference to educate — Sarah Adsit NF Mom

Patient Engagement

”

Patient engagement in research is increasingly recognized as an important component of the research process and promises to accelerate the development of new treatments, by focusing researchers on real-life issues that they may not have otherwise considered. As part of this initiative, CTF launched the Patient Representative Training Program, designed to prepare individuals with NF and their families to participate as advocates in NF research.

Our goal is to help patients learn how to add their perspective during all phases of the research process – from the laboratory, to the clinic, to the community. Patient Representatives are trained to work with stakeholders such as researchers, research institutions, the pharmaceutical industry, the Food and Drug Administration, and patient advocacy organizations.

Neurofibromatosis Clinic Network (NFCN) The Neurofibromatosis Clinic Network was established to standardize and raise the level of neurofibromatosis clinical care nationally, and to integrate research into clinical care practices. In 2017, the NF Clinic Network grew to 52 clinics that serve approximately 14,000 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.

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ANNUAL REPORT 2017

and support individuals affected by NF. Symposia are often hosted by NF clinics from around the country and audiences may include patients, family members, healthcare providers, and educators.

Additionally, CTF sponsors the NF Forum, a gathering where NF patients and families can learn more about NF research, and enjoy social activities to connect with other members of the NF community. In 2017, CTF was awarded a coveted grant from PCORI (Patient-Centered Outcomes Research Initiative) to support patient training at the 2018 NF Forum.

NF Registry By the end of 2017, over 8,000 individuals joined the NF Registry, making it the largest patient-centered database of people with NF, and the only one designed to be available to interested investigators. The Registry has proven to be a valid and useful tool for both patients and researchers, according to an analysis published in the journal PLOS ONE in June 2017. Not only are thousands of patients from all over the world contributing their data online at nfregistry.org, the data is being actively used—and appreciated—by researchers working on all forms of NF. Over 18 different studies and clinical trials have used the NF Registry to notify individuals who fit certain trial or study criteria.

The Volunteer Leadership Training Conference

NF Camp Over 100 youth attended the 21st annual NF Camp, which expanded from two to three July sessions in 2017. NF Camp is a weeklong adventure held at the beautiful Camp Kostopulos in Emigration Canyon, Utah. Campers enjoy horseback riding, rope courses, and day trips to local theme parks. At NF Camp, often for the first time, campers can talk freely about NF, share their experiences, and make lasting friendships.

“

The Volunteer Leadership Training Conference took place in April 2017 in Seattle, Washington, just before the Seattle NF Symposium. The gathering provides an opportunity for our active volunteers to learn how to grow their events, become more effective fundraisers, connect with each other, and learn more about the many programs the Foundation offers.

I seriously wish I could talk to every parent of a kid with NF and tell them what a positive, motivational, encouraging, life-changing experience NF Camp is.

”

— Kathleen Sullivan mom to NF Campers Mark and Aaron

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raising awareness

The Foundation’s marketing and communications efforts are committed to broadening knowledge of neurofibromatosis, by providing the most up-to-date information about NF on our website and in the Foundation’s publications. With a dynamic presence on social media, CTF is connecting NF families and spreading CTF’s vision to those without an immediate NF connection.

The Foundation’s media outreach efforts continue to grow, with countless articles in newspapers across the country. A growing number of TV and radio stations broadcast segments that feature stories of dedicated volunteers, NF walkers and endurance athletes, and stories of NF Heroes and their families.

The Shine a Light on NF initiative cast a blue and green glow on buildings, bridges, and monuments around the country and across the globe, bringing the 2017 total to 159 landmarks spanning 9 countries.

The I-35W Mississippi River Bridge in Minneapolis, Minnesota 16 |

ANNUAL REPORT 2017

Proclamations were issued in 26 state houses and 30 city halls across the country recognizing NF awareness month. CTF engaged local leaders and helped ensure that more people in office know about NF and how it affects their constituents.

With the “This is NF” photo series, we told a side of the NF story that isn’t often told–that of the passion that adults living with NF bring to their careers.

These professionals shared a side of their story that often goes unnoticed, demonstrating that living with NF doesn’t mean letting NF define you.

The Foundation’s annual NF Awareness Month campaign drew attention across the globe to neurofibromatosis and those living with this disorder. The I KNOW A FIGHTER theme permeated numerous events held during the month of May, as members of the NF community took the lead in promoting NF awareness and the mission of the Foundation.

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raising funds

NF Walk

“

Instead of presents this year, I want donations for my NF Walk. I want everyone to come for the Walk so we can raise money to find a cure for NF. — Evelyn Frias NF Hero, age 9

”

NF Walks are non-competitive, relaxed, celebratory events designed to champion the individuals who live every day with the challenges of neurofibromatosis. At these fun and inspirational events held across the country, communities rally around local families affected by NF. 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 in which it is held.

Do-It-Yourself Events With the help of our regional staff, individuals across the country organize one-of-a-kind fundraising events, including comedy nights, fashion shows, and Sweet Tea for Sophie stands, to help fund NF research. These events are held throughout the year and work to connect communities with our nationwide team of volunteers.

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“

I take strength and inspiration from the children and adults suffering from NF on a daily basis – this is the driving force that will push me to endure more hardship as the race progresses. I can only hope that my small effort helps to make a difference and raise money for the research needed to find a cure for NF.

”

— Craig Noble NF Endurance Athlete

NF Endurance The NF Endurance Team gives participants the opportunity to run, bike, swim, and compete in endurance events across the country and internationally. Comprised of a broad spectrum of athletes, from those who are running in a 5K for the first time, to courageous triathlon competitors, our Endurance Team goes the extra mile to end NF, and gains inspiration from NF Heroes (individuals with NF).

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advocacy

From the earliest days of the Foundation, CTF staff and volunteers have advocated relentlessly for continual federal funding of NF research, with frequent and highly strategic visits to Capitol Hill and Congressional Member District Offices. We are pleased that $15 million in dedicated NF research funding was again secured in the Fiscal Year 2017 congressional funding cycle.

The recipients of these federal grants are conducting research that is of immense value to NF researchers around the world.

The CTF Government Affairs Team continually expands the breadth of its advocacy and profilebuilding efforts with the guidance of outside counsel Squire Patton Boggs. We are actively engaged with the Defense Health Research Consortium. This Consortium is comprised of over 50 organizations dedicated to the preservation of annual funding levels for Congressionally Directed Medical Research Programs (“CDMRP”) within the Department of Defense.

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Without collaboration among the government, industry, academia, and foundations, we won’t get there. It is a team sport. . . . Your repository, your tissue bank, meetings like this where you reinforce the notion not to duplicate what’s going on…but to chase the risky, to chase the immediate, to chase the urgent. . . . I’m here to thank you for getting it right.

”

— Greg Simon president of the Biden Cancer Initiative in his address to the CTF NF Conference attendees at the National Press Club in Washington, DC

ANNUAL REPORT 2017

NF ambassador

Sarah Rodbell Sarah Rodbell was honored as the 2017 Children’s Tumor Foundation NF Ambassador, an award bestowed upon a young person with NF to recognize courage living with the disorder, and personal efforts to further the Foundation’s goals of research, public awareness, and patient support.

The daughter of Liz and Mitchell Rodbell, Sarah was diagnosed with NF1 when she was 10 years old.

When her mother was brushing her hair she found a bump. Later, after a biopsy, they found out it was a cancerous tumor. Thankfully, after two surgeries, she has been cancer free since 2009.

Sarah started fundraising for CTF when she was 11 years old and hasn’t stopped. Sarah helped plan and organize the NYC NF Walk, held a bake sale at her school, and she and her uncle raised funds for the Children’s Tumor Foundation through his participation in the IRONMAN Mont Tremblant. Sarah pushes herself every day and tries to make each day memorable.

She loves photography and spent her year as CTF’s NF Ambassador taking photographs, including a photo series for National Geographic, which was on display at CTF’s New York Gala.

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financial summary

“

Only 2% of the charities we rate have received 8 consecutive 4-star evaluations, indicating that Children’s Tumor Foundation outperforms most other charities in America. This ‘exceptional’ designation from Charity Navigator differentiates Children’s Tumor Foundation from its peers and demonstrates to the public it is worthy of their trust.

— Michael Thatcher

”

Charity Navigator President & CEO

Revenue 2017

65%

Fundraising Activities

Expenses 2017

11

Fun

82%

65% Research & Medica 17% Public Education & Patient Support

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ANNUAL REPORT 2017

Operating support and revenue 2017 2016 2015 Contributions – individuals $5,382,209 $2,839,870 $4,476,610 Contributions – corporations and foundations $3,285,858 $3,204,939 $3,499,807 Bequests $10,016 $102,522 $508 Contributed goods $ 80,418 $763,721 $772,851 Other income $491,993 $851,491 $56,252

CONTRIBUTIONS AND OTHER INCOME $9,250,494 $7,762,543 $8,806,028

2017 2016 2015 Special event revenue $ 2,600,665 $8,598,565 $6,640,698 Less: direct benefits to donors (461,433) (450,809) (405,301) Special event revenue, net $ 2,139,232 $8,147,756 $6,235,397

35% Donations

TOTAL OPERATING & SUPPORT REVENUE

$11,389,726

$15,910,299

$15,041,425

Operating expenses

1%

ndraising

7%

Management

cal &

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

$968,659 $1,039,689 $1,419,382 $1,862,625 $2,388,041 $2,902,314

$978,477 $1,692,756 $2,671,233

$12,720,491 $15,188,466

$15,024,721

Change in Net Assets from Operations

( $1,330,765)

Other changes NON-OPERATING REVENUE

Change in Net Assets

2017

2016 2015 $8,215,708 $7,618,638 $7,935,871 $2,116,742 $4,667,514 $4,417,617 $10,332,450 $12,286,152 $12,353,488

2017

$565,099

(765,666)

2017

Net Assets, beginning of year Net Assets, end of year

$721,833 2016

$16,704

2015

$304,524

$73,229

$1,026,357

$89,933

2016

$11,464,812 $10,438,455 $10,699,146 $11,464,812

2015

$10,348,522 $10,438,455

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with thanks The Children’s Tumor Foundation is grateful for the continued support of many individuals, corporations, foundations, and communities that have joined us in the fight against NF. Thank you for your help in advancing the Foundation’s mission.

CHAMPIONS $1,000,000+ Cupid’s Charity Gilbert Family Foundation Richard Horvitz and Erica HartmanHorvitz Foundation STEWARDS $500,000+ Flashes of Hope/Kick It

BENEFACTORS $25,000+ Assurant Foundation Barton Malow Ellen & Stephen Carpenter David & Michelle Carroll Jason Colodne The Derfner Foundation DTE Energy Foundation William & Marlene Emerson Brian & Luisa Ferruggiari The Forbes Company, LLC Linglong He & Charles Chen ICAP Services North America LLC The Jin Hua Foundation JPMorgan Chase & Co. The Kettering Family Foundation Lear Corporation Little Heroes of North Georgia LLC The MakeSense Foundation Steven & Alyson McKenzie Kevin & Elizabeth McMeen Paul, Weiss, Rifkind, Wharton & Garrison LLP Peerless Clothing International Patricia Spencer Strategic Staffing Solutions Walbridge Robert D. Walters, Jr. The Wireless Zone Foundation for Giving, Inc. SPONSORS $10,000+ Allen & Company, LLC Daniel & Robin Altman Jeffrey Appel Barry & Sewart, PLLC Brian & Kelly Behrens Belfor USA Group Inc. Belkin Burden Wenig & Goldman, LLP Bernard Financial Group Timothy Birkmeier & Malyka Degoa 24 |

ANNUAL REPORT 2017

PARTNERS $200,000+ Anonymous Sally Gottesman Rachel B. Tiven & Seth M. Marnin LEADERS $100,000+ CureNFwithJack Frank & Shelley Haughton

Black Knight Financial Services Blue Team Restoration Bob’s Discount Furniture Charitable Foundation, Inc. Robert Brainin & Nicola Kean Brainin The Broder Family Foundation Inc. The Brown Foundation Tricia Brown-Fowler Colin & Sarah Bryar Calfee, Halter & Griswold LLP Cantor Fitzgerald Relief Fund Citizens Commercial Banking Clear Capital Seth & Talia Cohen Colasanti Construction Service Inc. The Collingwood Group LLC Matt Cullen Benjamin Davey Ian & Chelsey Desmond Donald H. Baltzer Trust Eileen B. Baltzer Trust Elite Fire Safety, Inc. Emily Anne Weikert Charitable Foundation Equifax Foundation FCA US LLC Fifth Third Bank Eastern Michigan John & Marcy Fikany Forest City Enterprises, Inc. Gable. A Visual Solutions Company The Gallagher Family Foundation Mark & Tracy Galloway The George T. Lewis, Jr. 2001 Foundation Gertrude and William C. Wardlaw Fund Shirley Gilbert John & Stephanie Golfinos Goodwin Procter LLP

PATRONS $50,000+ The Benevity Community Impact Fund Bernard F. and Alva B. Gimbel Foundation The Colin Courageous Foundation, Inc. Columbus Blue Jackets Falic Family Foundation, Inc. Cynthia Henebry & Andrew Schoeneman

The Gordon and Llura Gund Foundation Stephen & Myrna Greenberg Greenberg Traurig, LLP Nicholas & Kristin Guehlstorf Heritage Optical Center Inc. The Huntington National Bank Ilitch Holdings, Inc. Image One Corporation Jones Day Andrew & Frances Kallman Kenwal Steel Corporation Kilpatrick Towensend & Stockton, LLP LaBelle Electric Alan & Linda Landis Mark & Andrea Light

Interblock USA L.C. Irving Berlin Charitable Fund, Inc. Stuart Match Suna The Paul E. Singer Foundation Michael & Kelly Peterson RBC Foundation USA The Spiegel Family Foundation Roland & Nicole Thoms UBS Business Solutions US LLC

Todd Lunsford Peter & Jacquelyn McKenna Medical College Of Wisconsin Microsoft Matching Gift Program Stephen & Eve Milstein National Basketball Association National Institutes of Health New Orleans Firemen’s Federal Credit Union Anita & Charles Newberg Jerry & Frances Newberg Nomad Framing, LLC Nomadic Expeditions, Inc. Michael & Sara Orlando Jeffrey & Diane Owens

Jeff Perry Plante Moran Kevin & Kathryn Prokop RAM Construction Services RateMarketPlace Richard and Jane Manoogian Foundation Andrea Rockefeller Natalie & Win Rockefeller Jean Rothschild Kenneth C. Rudd, Esq. Janet H. Shaver Win Sheridan Gary & Lisa Shiffman SHoP Architects Philip & Judith Shwachman Jonathan Staver & Rachel Winer

Seattle NF Walk On Saturday, September 23, 2017, hundreds gathered at Owen Beach in Tacoma, Washington for the fourth annual Seattle NF Walk and raised more than $89,000. NF Hero Natalie Denham was in the spotlight at this Walk, as were many other NF Heroes who enjoyed a day full of fun, food, and laughter. Special thanks to Christa Castanon and Michele McMillin, Walk co-chairs, and to Matthew and Kate Riley of Team Isla, who raised more than $50,000 for NF research.

DONOR SPOTLIGHT

Silvercup Studios Randall & Shabnam Stanicky Robert & Julie Taubman United Parcel Service Vess Family Foundation Juanita Victor Angelo Vitale Wells Fargo Foundation Agnes Williams Zekelman Industries Zisson Foundation FRIENDS $5,000+ Active Media Services, Inc. Richard Altham Koby Altman Amazon.com, Inc. American International Relocation Solutions Frank Argenbright Armin & Esther Hirsch Foundation Tim Armstrong LuAnn Ashley Asphalt Specialists, Inc. John & Christine Bakalar BancorpSouth Insurance Services, Inc. Barbara Ann Karmanos Cancer Institute Hubert & Diane Barksdale Mary & Anthony Barra Roberta Barrett Craig & Suzanne Baumann Bay Branch Foundation Beaumont Health Michael & Shaun Beckish Jason Beckman Beta Sigma Phi Birch Run Capital Bluewater Movements, Inc. Jonathan & Shari Boos Bullseye Guns and Ammo Brian Callaghan Campbells Legal Centerplate Charles Schwab Continental Canteen

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Continuum Services. LLC Cook & James LLC Cooper Levenson, P.A. Corelogic Solutions, LLC Corker and Associates Insurance Crain Communications Inc. Anthony & Jessica Curis Ethan & Gretchen Davidson Peter & Leslie Diamond Dick and Betsy DeVos Family Foundation Dinverno Group, LLC Dykema Gossett, PLLC Edward C and Linda Dresner Levy Foundation Peter & Carla Emanuel Euroworld MotorSports, LLC Falcon Investment Advisors, LLC Deborah & Douglas Feist Paul & Sarah Fisch Donald & Debra Fitzsimmons Fox Sports Net Ohio, LLC Freeport-McMoran Foundation David & Terri Friedman Fryz Services Inc George & Lara Gaine Geoff & Sherry Galloway Jay & Maria McCann Ghazal Ethel Gittlin Global/Motor City Office Solutions Goldman Sachs & Company Goldman Sachs & Co. Matching Gift Program Stuart & Marcey Goldner Grand Steel Products Joel & Kelly Gurman Heritage Vision Plans, Inc Brian & Jennifer Hermelin Tod Highfield IBM Employee Services Center Indian Trails Inc. Intracoastal Abstract Co., Inc. IVF Michigan P.C.

John E. & Nellie B. Bastien Memorial Foundation Eric & Mary Beth Johnson JOMCO, Inc. Sarah Jordan & Suresh Nagappan Fadie Kadaf Richard & Leslie Kates Scott Kaufman John Kiczek & Christine Seuffert George & Joyce Klett Krabby Painters Inc. Lead Intelligence Inc. William & Marcella Lerner Alan Lewis Long Island Homebuilders Care Inc. Brendon & Kirstin Lynch Michael & Karie Lyon Bob & Dianne Macduff Macquarie Group Foundation Major League Baseball Charities, Inc. Guy Manuel & Linda Goldstein The Mars Agency - Mercury Promotions Linda H. Martin Vicki Match Suna McMullen Family Foundation Del Mecum Jr. MeridianRx Metro-West Appraisal Co., LLC Metropolitan Real Estate Group, LLC Microsoft Corporation Roberto & Allison Mignone Mortgage Bankers Association Motor City Electric Co. Motor City Slitters NCP Solutions, LLC Harvey & Joan Newman Kendall Newman The NF Team Foundation James & Ann Nicholson

Dan & Jennifer Gilbert Dan and Jennifer Gilbert hosted the annual Detroit beNeFit V, “A Fantastical Affaire to End NF,” held at the Cobo Center in downtown Detroit, Michigan, on November 18. This huge and fantastic affair, which was attended by leaders and celebrities in the Detroit community, is a highlight of the year. 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 Gilbert’s hard work, dedication, and vision have translated into over $18 million raised in five years for the Children’s Tumor Foundation. Thank you Dan and Jennifer for your continued support!

Ryan & Kristy Nobles Anthony & Heather Nuckolls Ohio Valley Region Porsche Club of America Old Republic National Title Insurance Co.

One Eighty Foundation Paragon Micro Emily Parker The Patrick Michael Rubin Scholarship Fund, Inc.

Our mission is to find a cure for NF in Isla’s lifetime. With the love and help from everyone on Team Isla, and in thanks to all of the amazing teams across the country, we will do this. We will end NF. — Matt Riley, Isla’s dad and Team Isla Captain

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with thanks Pepsico Silicon Valley Community Foundation The Perkins Coie Foundation Plunkett Cooney PC Paul Pompa Premier Event Technology, LLC Pullman SST, Inc. Punch Bowl Detroit LLC Rags For Riches Foundation John Risner & Sharon Parente Mitchell & Elizabeth Rodbell Frank & Victoria Romano Laurence & Lori Rosenberg Michael & Melanie Rothenberg Sacramento Region Community Foundation Saks Fifth Avenue Bluma Schechter Nicole Schottenstein Daniel & Roxanne Schwartz Securitas Security Services USA, Inc. Marcus Severgnini Dong & Lisa Shen Aaron & Melissa Shepherd Silicon Valley Community Fdn. - Unilever Fdn. Employee Fund Puneet Singhvi & Meenal Mehta The Skillman Foundation Sloan Environmental Services Steven & Pamela Smith Susan Sosnick Stephen & Mary Birch Foundation, Inc. Steven & Lottie Walker Family Foundation Stout Risius Ross, Inc. Suburban Motors Company, Inc. Pete & Lynn Tanguay Textile Rubber Chemical Co. Thermo Fisher Scientific Thomas Sebold & Associates, Inc. William & Geneva Thorndike Jodi & Justin Trivax TRUiST TSG Interactive Services Limited Turner Construction Company Foundation Ulster Carpet Mills (North America) Inc. Ultimate Parking Management, LLC Ultimate Software, Inc.

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ANNUAL REPORT 2017

ValueTec Appraisal Services Jeffrey & Christine Veatch Venture Solutions The Vidda Foundation Dick Vitale Nate Walker Wayne State University Chad Weinbaum Whataburger Whiting-Turner Contracting Company Thomas Williams & Kelly Rood Women Run Arkansas Alex Woods Andrew B. Wrublin Andrew Wuertele Timothy Wuliger Wuxi NextCode SUPPORTERS $1,000+ A. Pompo Electric, Inc. Christina Acampora Active Network Inc. Aimee Adams John Adams Timothy Adams Adrianna Papell Group Austin & Sarah Adsit Advocure NF2 Inc. Affiliated Adjustments Group, Ltd. Syed Ahmed David & Tara Aho Aird & Berlis, LLP

Albert A. Robin Family Foundation Mitchum Albom & Janine Sabino Aldi Inc. Michael & Linda Alexander Brock & Ginny Aller Alliance Data Alliant National The Allstate Foundation The Altman Family Foundation Richard Ambrose American Asphalt - Repair & Resurfacing Co., Inc. American Express Foundation ANC Sports Enterprises, LLC Heath Anderson Judith Anderson Sabrena Anderson Ted Andrusz David Angstreich Patricia Anoai Lisa & Anthony Arena Arkansas Children’s Hospital Chris Arndt Robert Aronson & Lisa Schyck Arrow Office Supply Arthur’s Prime Steakhouse Tim Aspinwall Aspire Coleman Elementary Julie Atkins The Atlantis Security Company John Attfield Gregory Babin Patricia Bacon

Sara Baker Kathy Banicki Bank of America Foundation, Inc. Bank of the Ozarks Ryan & Sarah Bantz Chad & Nikki Barnhill Robert Barrack Lori Barranon Tim & Sarah Barry Greg & Susan Bartelt Brett & Holly Bartlett Clifford & Dana Bates Baugh Foundation, Inc. Bruce & Marlene Baumann BDH Foundation Albert & Julia Bean James & Karen Bearns William & Janet Beaulieu Kris & Carrie Beeman Nicole Beletsky

Dan & Dorothy Bell James & Carolyn Bellinson Steve & Bonnie Bentley Eytan Benyamin & Michal Shulman Michael & Debbie Berger Josh Berkowitz Berkshire Hathaway HomeServices, Chaplin Williams Realty Brian & Nora Berman Victor Berman Beta Sigma Phi-Kappa Mu Charles & Myra Biblowit Jack & Shirley Bick Big Y Foods, Inc. MaKayla Bigham Derek Bilcik & Lynn Rooney Bilcik Cheryl Bittel Allan & Ellie Bittker

Dancing With Our Stars The stunning Dancing With Our Stars annual benefit was held on September 7, 2017. At this 10th Anniversary Spectacular, Arkansas celebrities showed off their dance moves as they competed for the coveted mirror-ball trophy.

The first Dancing With Our Stars was held in 2007 and raised $25,000. The event has grown tremendously and this year raised more than $200,000, bringing the ten-year total to over $1 million for NF research. Our gratitude goes out to Lesley Oslica and the DWOS Committee for their continuing work on this wonderful event.

DONOR SPOTLIGHT

David Bland & Susan Lesh Robert & Cecelia Blasier Blast Analytics & Marketing Inc. Greg & Suzanne Bloom Penny and Harold Blumenstein Bodenweber Family The Boeing Gift Matching Program Thomas & Laura Bona Nelson & Carolyn Bonheim Kenneth & Julie Booth Regan Borg Julie Bouchard & Glenn Beyerman Jeffrey & Karin Bouvier Ricardo & Carmen Bracer Bright Funds Foundation Briscoe Family Foundation Bristol-Myers Squibb Co. Foundation Linda Kay Brodsky William & Candee Brooks Andrew & Laurie Brotman Brooks & Jennifer Brown Esther R. Brown Rhett & Velta Brown William H. Brown Patricia Bruemmer William & Nora Bruemmer John & Tanya Bryant Bernie & Mary Beth Buescher Thomas and Sandra Burnham David Burr Heather & Allen Butler C & C Properties Cabaret for Life, Inc. Christopher & Barbara Cagnazzi Mark Caine Jarrod & Samantha Canane Tanya Carr-Waldron & Bradley Waldron David Carter John & Joanne Carter CarVal Investors Michael Cashell Michael & Heidi Cashell Christina Castegren Cetera Advisors LLC Henry Chace Hong Chae Darryl & Sherry Chene Mark & Sharon Chertok Gregory Chew James & Erin Chimento Chipotle Mexican Grill CHMWarnick, LLC Cody Christensen Cincinnati Claims Association

City of Milton General Fund Linda Clark Clear Mountain Community Church Damian Clogher & Christina Petrino Elizabeth & Charles Clogston Jason & Nicola Cole David Colleran Collins Management Foundation Eric & Mia Colodne Brigham G. Colton Cone Health Foundation Harry Conkey David & Wendy Conn Contra Costa Roofworks, Inc. James Cooper Peter & Julie Cooper Core Physical Therapy and Sports Medicine PC Ray Costa Helen & William Costigan Allan Coulson Craig Realty Group Citadel, LLC Crossfit NEGA William & Cecelia Crouse Eleanor Cruz Current Solutions, Inc. Curtis Glass Company Chris & Danielle Dabbs Dale L. Reese Foundation Michelle & David Damanskas Anthony & Karen Damaschino Joan Dame Fred Damianos Uma Darisetty Vincent & Sheri Davi Dwight & Cheryl Davidson Christa DeGagne Gino Del Pup John & Jeannie DeLoach Edi & Ariana Demaj Frank Denardo Danielle Derosa Design Continuum Paul Deters Robert DeVries The Dianne & David Stern Foundation Eleanora Diehl John & Patricia DiNozzi Dixie Property Management, Inc. DMAC81, LLC Steve & Mindy Dodobara Bret Doerring Pearl Doherty Daniel Domenicucci

R. Bruce & Madelyn Donoff David Dries Amanda Driscoll Mike Duggan Cynthia Duley Tim Dunlap Brenda Duno Durable Packaging International Eaton Corporation Mark Ebel & Catherine Laskey Brian & Laura Eby Frank Edwards Mark & Hannah Ehrli Rae & James Eisdorfer Scott & Eva Elkins Emmanuel Lutheran Church Amy Enger Michael & Kori Ensley Enterprise Holdings Foundation Equal Vision Records Inc. Ernst & Young LLP Christopher & Kristy Evans Elizabeth Evans John Evans Marianne Evans Jerome Falic Robb Ferguson Jack Fernandez Alicia Fife Steven & Jane Fink First American Mortage Solutions Rose Fiscella & John Novello Mark Fisher David & Deena Fishman John & Beverly Fitzgibbons Jared Fleisher Robert & Cynthia Fleming Maura Fletcher Daniel & Norma Frank Michael & Barbara Franklin Linda Freedman Fuel Coal-Fired Pizza Ginger Gahr Rob Gallivan Leon & Doris Galloway Thomas & Rosemary Gangel Vero & Gloria Ganio Lawrence Gannon Michael Gansey Geico Philanthropic Foundation Marilyn & Bertram Gelder Mahmood & Schelaine Ghassemi Alfred & Karen Giardenelli Jeffrey & Meredith Gibbons Niall Gilleece Kathy Girotto

Flashes of Hope Since it was founded in Cleveland in 2001, Flashes of Hope has photographed close to 60,000 children fighting cancer to help them look and feel attractive and invigorated, boosting their confidence as they cope with the depths of the disease. “Big Shots & Little Stars” is the charity’s most impactful annual fundraiser, raising money for research to accelerate a cure for children’s cancer. The night culminates with a strut down a fashion runway spanning the floor of the Quicken Loans Arena. Cleveland-area business leaders, civic leaders, and Cavalier basketball players partner with the children and escort each of them down the runway for a moment in the spotlight.

Thanks to this event, Flashes of Hope made a 2017 donation of $750,000. The Children’s Tumor Foundation extends our utmost thanks to Flashes of Hope and its founders, Kip and Allison Clarke, for their continued support in funding NF research.

Garry Glasco Daniel & Kristen Glazer DeeDee & Herb Glimcher Kevin & Robin Goddard Michelle & Gerald Goldberg

Carl Golub Kenneth & Laura Goodkind Jordan & Randi Goodman Larry Gossard Yoshi & Toyoko Goto

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with thanks Graham Holdings Matching Gifts Program Grand Council of Cryptic Masons of the State of New York Patrick & Eileen Grasso Chad Graves Wesley Gray Wendell & Rhonda Green Green Valley Structural, Inc. Robert & Dana Greenwood Jason & Angela Gregorec Thomas & Anita Gribben Richard Grigsby Horacio Groisman Harley & Rochelle Gross Marcy Gross John & Karen Guardiola Agnes Gund H2M Architects + Engineers Hillel & Ruth Hachlili Katrina Hamilton Don Hanigan Nathan & Elaine Hanke Rush & Rachel Harding Sandra Harlow Renee Harrell Harris & Eliza Kempner Fund Robert & Michelle Harrosh Dintzner Hartless Foundation Patrick Hartnett Lisa Hathaway Matthew & Nora Hay Stephen Heal Chris Heckman Thomas & Elizabeth Hefferon

Hepta Systems Inc. Herbert Setlow Family Fund Herr, Pedersen & Berglund, LLP Ira Hersh Maurice & Jacqueline Herz Maryellen Herzog David & Dena Hibbs Herren & Susan Hickingbotham Barbara K. Hicks The Hilaria and Alec Baldwin Foundation, Inc. Elaine Hill Tony Hillbruner Hillcrest High School Jason & Meredith Hillman Cindy Hipp Willliam Hoffman Robert Hogle Tony Hokayem John & Michele Holbrook Adam & Carol Holzhauer The Homestead Earl & Dianne Homsher Michael & Mary Horlick Penny Howland Jeff Hu Ed & Betsie Huben Richard & Marianne Huelsmann Brad Hughes Brian & Kristine Hughes Jerry & Maureen Hunter Mark & LaDeana Huyler I.C.A.N. Foods, Inc. Guy Ikpah

Imperial Parking Systems Inc. Joshua Izumigawa J.P. Morgan Charitable Trust Matching Gift Program The J.P. Morgan Chase Foundation Keith & Julie Jacks Michael & Mozelle Jackson Dana & David Jacob Richard & Amanda Jaffa Bradley Jakeway Steve & Sandy James William & Janney Jay Jesse & Tyler Jenner Mary Ann Jennings Brian & Heidi Jensen Jose Jimenez JJ Twig’s Joe Muer Seafood Johnson & Johnson Family of Companies Kenneth R. Jordan The Joseph & Drenda Vijuk Foundation Jill Joslin Judevine Chiropractic & Rehabilitation Clinic Robert & Catherine Kacprzycki Robert Kahn Robert Kane Kenneth & Judy Kaplan Leon Karvelis Alex Kates & April Ondis Paul & Lois Katzman George & Mariana Kaufman Karp Gabriel

Kennedy Johnson Schwab & Roberge, LLC Keystone Symposia Timothy Kiefel Christopher Kirwan Kiwanis Club of Midlothian-Chesterfield Ron & Tamara Knapp Kohl’s Department Stores George & Jutta Kohn Margaret Kohn Sanford & Virginia Kornfeld Scott Kosinski Michael & Linda Kowalik Wendi Kreutz Laura A. Krietemeyer Peter & Deborah Kuntz Rick & Caroline Kuper Ellen Kurtz & Stephen Smith Marshall Kutz Amy & Janusz Kuzdowicz LA-Z-BOY-H3 Home & Decor Joseph & Barbara Labriola Derek Lammel Scott & Lauren Landers Steve & Sandra Landers Scott & Amy Landis Langan Engineering John & Edyth Ledbetter Ronald & Debra Lederman Henry Lee Leggett & Platt, Inc. Doreen Heremelin & Mel Lester David J. Levine Irwin & Barbie Levine Wendy Levine & Jonathan

Magnus & Marketta Lindeback Samantha & Steve Linden Paul Lioce Paul & Yael Lipof Ron Lipof & Lara Levine Lipof Jody & David Lippman Lisa Wendel Memorial Foundation Scott & Allison Lissner Michael & Mary Ann Liut LLR Inc. Long Lake, Ltd. Karen Loussia Andrew & Dawn Lowell Christian & Dani Luers Mary Luke Andrew & Nora Lusk Tonya & William Magill Nathan & Mary Mahrer Main Street Bank Major League Baseball Players Trust Hemant Makhija David & Tracey Malins Ann Mallory Salvatore & Marylou Mangiapane Scott & Jennifer Marks Marks Paneth LLP Erick Marold Marsh & McLennan Agency LLC Jeffrey & Ginger Marshall Jennifer & David Marshall Martin Anderson-Gracia Anderson Foundation Inc.

Mechanic Matthew & Stacy Levy Barbara Liebetrau

Terry & Karen Masching Daniel Mashoof Sarah Mather

Cocktails for a Cure Cocktails for a Cure was held on October 22, 2017 at the Brookville Country Club in Long Island, New York. It was a beautiful evening filled with delicious hors d’oeuvres and flowing champagne. Thank you to all of the attendees and donors, and to the wonderful event committee: Laura Perfetti, Cristina Spoto, Lisa Arena, Jill Hannity, Pam Blank, Kristen Kalenderian, Meg Blank, and Marietta Perfetti. The evening raised more than $108,000 to support the mission of the Foundation, thanks to a silent auction, a raffle, and a live auction in honor of NF Heroes Julia Perfetti and Charlotte Spoto.

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ANNUAL REPORT 2017

Jenny &Charlotte Jared Kearschner NF Heroes Spoto and Julia PerfettiKeiserman at Cocktails for a Cure Amanda Kendra Scott LLC

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DONOR SPOTLIGHT

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Kevin & Stacey Mullins Chip & Cindy Murphy Lisa Murphy & Cindy Bourgeault Rick & Windsor Naething Neeb-Kearney & Co., LLC David & Shanna Nelson Renee Nelson Scott & Tara Nelson Barbara Nessim Brian & Yim Neugeboren Neumann/Smith Architecture Paul & Nicole Nevitt Michael & Judy Newell NewGen Strategies & Solutions, LLC Newmont USA Limited Jon Nichols Cristina Nicoara Leo Nicolini Sonein Noack Jeffrey & Constance Noiva Mariam Noland & James Kelly Northwell Health David Norton Irving & Barbara Nusbaum Karen & Dennis O’Keefe Terence & Kay O’Neill Edward O’Shea Kevin & Susan O’Shea R. Wayne & Emily Ogozaly Richard & Caroline Olgee Gabriel Oliveri June Oller-Moya & Jeffrey Moya John & Cathy Olszewski Otis Elevator Company Thomas Oven Wesley & Carolanne Owenby George & Sandra Pace Jason & Kristin Pace Cherie Page & Chris Petiprin Pak’s Karate Academy of Mandarin Chelsey Paksi Bobby & Carol Palmer Matthew Parker

Glenn Pasch & Mayra Bracer Pasch Pat Covelli Foundation Jagruti Patel Robert & Patti Patent Patricia M. Hynes & Roy L. Reardon Foundation Andrae Patterson Brian Payne Edward Pearson Pentastar Aviation Lisa Perehoduk Paul & Karen Perella Alfonso & Doris Perez Anthony & Laura Perfetti Francisco Javier Peris Felipo Leigh Perkins The Perkins Charitable Foundation Perkins Coie LLP Douglas & Colleen Perry Lora Perry Peter Basso Associates Melissa Peters Bruce Peterson Mary Peterson Paul & Tricia Pfeifer Roy & Rose Pfeiffer Pfizer Foundation Matching Gifts Program Robin & Erik Phelps Richard Pietch Margaret Pill Starr Piner Zach & Michelle Piner Charles & Patricia Pittman Gordon & Denise Pitzman Pledgeling, LLC Kristine Poirier Kenneth R. Pomeroy Jr. John Power Paul & Angel Price Professional Movers Prosperity Bank Tony Pulice Hattie & Ted Purtell R.D. White Co. Inc. Rachel Hardester LeAnn’s Jewelry

Cupid’s Charities February of 2017 marked the eighth consecutive Cupid’s Undie Run to benefit the Children’s Tumor Foundation. Everyone’s favorite Valentine’s Daythemed party has shown us yet again what an inspired group of generous people can do to spread awareness and raise money for NF. Cupid’s has grown by leaps and bounds since the first undie run in 2010 with 300 participants, to more than 89,000 all-time undie runners! Cupid’s Undie Run brings together individuals directly affected by NF and people who are unaffected for a unique and fun event to end NF. Thank you to all the undie runners, volunteers, and staff for the ongoing support from Cupid’s Charities to the CTF mission!

Howard and Mara Rachlin Frederic Ragucci Randall-Paulson Architects, Inc. Eric & Abby Randolph Albert & Audrey Ratner Brian & Pat Ratner

Rayonier Operating Company LLC Jason & Stacey Raznick Realtime Data Team Donald & Judith Rechler Daniel & Lisa Reck Steve Reddy

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Maxine and Stuart Frankel Foundation Benjamin & Krista Maxwell John & Nancy McFeeley Robert & Jamie McGrath Kaye McGregor Bridget McKeon McKnight Title Escrow Michael & Lori McLaughlin Fred & Elizabeth McLeod Shawn & Erin McLevige Tim & Michele McMillin John McNamara MCO Cartage Debbie Means Paul & Lili Meilink Rodrigo & Luz Mejia Jason Merchant The Merck Foundation Meritor, Inc. Dominick & Melissa Merlucci The MHE Foundation, Inc. Steven Middleton Flora Migyanka John & June Miley J. Scott & Susan Miller Mark Miller Richard & Margaret Miller Thomas & Janice Milone Guo Min Patricia & Donald Mintmire Luis Miranda Mello & Mary Jo Mitchell Joann Miyamoto James & Laurée Moffett Frederick & Shelley Molineux Stewart Monday Michael Montanaro Mark & Blanca Montella Darlene Monzo James & Cathy Moore Moors & Cabot, Inc. Christine Morrison Mike & Darlene Morton Philip & Renie Moss William Moyssiadis Kerry & Steve Muller David Mullett Kelly Mullins

She does not understand all the aspects of NF1 yet, but she knows that it is a part of who she is and that it makes her stronger inside and out.

— Hillary Adams, mom to NF Hero Julia

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with thanks CureNFwithJack CureNFwithJack continues to graciously support the Children’s Tumor Foundation through golf tournaments and events around the country. The 6th Annual DC Golf Classic was held in October of 2017 and drew participants and donors who have generously contributed for years. In addition to the Washington, DC event, CureNFwithJack hosted two golf tournaments in Atlanta, Georgia, as well as a fundraiser through the Atlanta Charity Clays.

CureNFwithJack was founded by Jake and Beth Burke, who rally around the NF cause in support of their son Jack, who is now thirteen and lives with NF1. In 2017, CureNFwithJack made a generous $150,000 donation to support NF research. Our utmost thanks to the Board of Directors of CureNFwithJack (who are all volunteers and not directly affected by NF) and the entire Burke family, Jake, Beth, Jack, Luke, and Grace for your ongoing support.

You are providing hope for millions who live with NF. J. Michael & Pamela Rediker Daniel & Joan Reilly Dan & Kyle Reinhard Matthew & Melei Renicks James & Charlotte Reninger Republic National Distributing Co. Sloane Rhulen Melvin & Patricia Rice Randall Rich Richmond University Medical Center Anne Riesbeck Matthew & Kate Riley Jami & Shawn Riordan Macarena Riva Frank & Theresa Riviera RJL Charitable Foundation The Robert H. and Terri L. Cohn Family Foundation Jared Roberts Jeffrey & Theresa Robertson Brian & Kimberley Robinson Darrell & Debbie Robinson James & Barbara Robinson Rocco’s Wilshire Inc. Sherly & Gregory F. Roche, III Rocks Off Pamela Rodgers Shari & Darryl Rogers James & Tara Rogers Barry & Jody Rogow Scott Ronayne Matthew Rosell Nancy S. Rosen Jonathan Rosenbaum Edward & Nancy Rosenthal 30 |

ANNUAL REPORT 2017

Toni Ross Ronald & Carol Rothrock Kellan Rowland Royal Cup Coffee and Tea Allan Rubenstein & Jane Halperin Mark & Stacy Rubin Alan Russell Patrick Russell Rutronik Inc. Amy Ryan Preet Sabharwal

CureNFwithJack made a dynamic check presentation of their 2017 donation at the 2018 NF Forum, and surprised everyone with an additional $40,000 donation in celebration of CTF’s 40th anniversary!

Nicholas Sacco Jonathon Sadowski Jeffrey & Kimberly Sakwa Michael Salemo Jessica & Brett Samblanet Sanford Health Doug Santos & Angela Matthews SassyJax Boutique Dona Sauerburger Priscilla Saunders Joseph Savage

Elizabeth Sawicki Douglas & Nancy Schaefer Robert & Wendy Schaffer Jim Scheinman Michael Scherl Robert Schlytter Ian Schmidek Robert Schneider & Laura Coruzzi Aimee Schroeder Debra Schultz Brooke Schwartz

The New York City Poker Tournament The 2017 New York City Poker Tournament was held on June 7th and hosted over 135 players. The annual event brought in more than $100,000 to support NF research.

We extend a huge thank you to to CTF Board Member Dan Altman and the rest of the planning committee for, once again, going all in for CTF! 2017 Poker Committee members Dan Wilpon, Jon Tolpin, Corey Altman, CTF Board Member Dan Altman, and Brandon Maymudes

Veronika Scott John H. Scott Jr. Angela & Paul Sebald Sei Bella Med Spa Fraser Seitel Pasqua Semeraro Seymour & Barbara Leslie Foundation Leon Shaulov Andrea & Roger Sherr David Shomo Jr Joel Shulman

DONOR SPOTLIGHT

Michael & Linda Simon Craig & Cheryl Simon Don & Nancy Skaff Graham Skidmore Melinda Slatt-Friedeberg & Daniel Friedeberg Sandra Slifer Randy & Sasha Sloan Hames Smamson Alan & Vivian Smith Gordon & Penelope Smith John & Sabrina Smith Tim Smith Travis Smith Snell Prosthetic & Orthotic Laboratory Jim Snyder Harris & Sharon Snyder Richard & Gail Sobel Southern Glazer’s Southwest Licking Youth Football John Spears Margaret Speciale Adam Speck Lynn Spencer Mark & Lenore Spoonamore St. Patrick High School St. Paul’s Lutheran Church Jim Stanley Staten Island South Shore Grandmothers Club #1028 Steamfitters’ Local Union 420 Esta Eiger Stecher Walter & Priscilla Steenbergen Steiner Sports Memorabilia, Inc. Nicole & Todd Steinert Lynn Stern & Jeremy Lang Steve Landers Chrysler Dodge Jeep Gilbert Still Jr. & Laura Still Judith & James Stillwell Matthew & Ronda Stoffer Martin & Mary Ann Stone Leanne Story Stephen & Christine Stout John Striker & Eda Modesta Rachel & Derek Strum Studio 13 Design Group Robert & Arlene Subin Alan & Joanne Suna Sandy Sung SunTrust Foundation Cesar Kenji Suzuki Debra & Ray Swafford John & Michelle Sweet Donald & Susan Swift Anne Syme SYSCO Food Services of Central Florida Charles Talaber Taste It Presents, Inc.

Frank & Mary Ann Tataseo David & Rasheena Taub Marc & Ronna Taub Sheldon & Andi Taub Tavistock Financial, LLC Tyler & Alicia Tegtmeyer Temple Israel Jacob Thibault Todd & Elisa Thompson The Thompson Foundation James Thoms Thoth Charities LLC Thrivent Financial Farida & Satrohan Timal Paul & Claudia Timko Thomas & Lauren Tobin Glen & Judi Tomaszewski Julie Tomsula Tredici Pizzeria Inc. Mark & Natricia Tricano Troutman Sanders, LLP Andrew & Terha Truscott Carey Tump Charlie & Terri Turner Frank Tursi Alyssa Tushman Herbert & Grace Tyler Johnny & Kim Tyler UAB Educational Foundation Nicole Ullrich & Mark Johnson Joseph Umdenstock & Elana Wills-Umdenstock Unilever The University of Michigan University of Rochester Medical Center Unum Group Wayne & Mary Ann Upshaw Gail Urchyk V-Cole Enterprises, Inc. Ashley Vacanti Angela Vallot & James Basker The Vana Family Foundation Carla Vargas Mattie T. Vega Venue Solutions Group, LLC Ena Verdi Verihealth, Inc. Verizon Foundation Veterans United Foundation Bill Vickery David & Kelly Victor Donald Vineburg VMware Inc. Vogel Schwartz Foundation Jayne Vogel Sean & Tiffani Vogel Caryn Volpe Daniel Voss Voya Retirement Insurance and Annuity Company Joseph Walczak Mark & Angela Waldrip

Paul Walker Margaret Wallace & Wayne McCormack Walmart Foundation Derek Warden & Margaret Laudise Joann Warren Adam Wartski Aaron Watkins Thomas & Priscilla Watkins Jennifer Watson The Wawa Foundation, Inc. Brenda Wayne Danny & Donna Weaver Patricia & Jeffrey Weaver Evana & Roger Webster Brandon Weems Bruce Weider & Laurie Fletcher-Weider Richard Weinberg & Marissa Sappho Michael Weiner & Danielle Horvitz-Weiner Alan Weinstein Bob & Karen Weisberg Sabrena & Wayne Weisenburger Amy Wheeler Bill Whittaker Kenneth Wile & Janet Ganio-Wile Obadiah Wilford Richard Wilhelm William and M.L. Christovich Charitable Foundation, Inc. Louis & Roberta Williams Daniel Wilpon Charles & Amber Wilson S. Michael & Linda Wisneski Heather Wolf Lawrence & Carol Wolfe RJ Wolney Pamela Wolters Wolverine Solutions Group Wonderful Giving Michael Wootton Nicholas & Kimberly Wuckovich Xi Ye Suzanne Yee Taylor Yi Kaleb Yohay & Amanda Bergner Jarrod & Eun Yuster Zeichner Ellman & Krause, LLP Thomas & Amy Zeifang Alexandra Ziegler Robert C. Zinnershine Brad & Lisa Zorfas

Sally Gottesman Sally Gottesman became involved with CTF after her oldest daughter was diagnosed with NF1 over a decade ago. In 2017 she made a generous multi-year commitment to the Foundation to support CTF’s fundraising strategy and advancement, support that will have significant impact upon the future of the Foundation. Sally is a donor-activist and has committed herself to increasing funding and catalyzing research for NF. A graduate of Wellesley College and the Yale School of Management, Sally says “I am motivated to use my time, my money, and my education to help my daughter and all people and families who have NF. I hope that everyone touched by this disease will join me by generously giving of their resources because I am confident that collaboration is the breakthrough ingredient to solve this problem.” In addition to her commitment to NF research, Sally serves as the Chair of Encounter, which brings American Jewish leaders to the West Band and East Jerusalem on immersive educational experiences so that they can more constructively engage with the most critical issues at the heart of the Israeli-Palestinian conflict. Our thanks to Sally for extending her expertise and support with such gracious enthusiasm.

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extraordinary spirit

JONATHAN SADOWSKI Actor and producer Jonathan Sadowski competed for the Children’s Tumor Foundation in the celebrity edition of the cooking show Chopped in April of 2017. He won the episode, and then moved on to compete for the Foundation in the celebrity final! Best known for his role as “Josh Kaminski” on the Freeform sitcom, Young & Hungry, Jonathan has been a valued friend of the Foundation for years. He has been an active participant and spokesperson for CTF’s Los Angeles NF Walk, and can be seen in a PSA promoting the NF Walk program. Jonathan also makes frequent appearances at events around the country, including Kids Fashion for NF and the NY Gala. He volunteers his time to meet with NF patients and families. Thank you, Jonathan, for your vibrant energy and ongoing support!

IAN DESMOND When baseball player Ian Desmond was playing for the Washington Nationals in 2012, he befriended South Carolina native Ethan Brown, who had been diagnosed with neurofibromatosis. Ian began interacting with Ethan via Twitter and invited him to a game in Atlanta later that year. Since then, the two have continued to correspond and Ian, who now plays for the Colorado Rockies, has become a champion for NF awareness and the Children’s Tumor Foundation.

In 2016, Ian and his family pledged to donate $1,000 to the Children’s Tumor Foundation for every run he hit during the month of May for NF Awareness Month, resulting in a $20,000 donation.

In May of 2017, Ian released a special edition T-shirt featuring his profile and our End NF message, with the proceeds from sales coming to CTF. In June, nearly 200 members of the CTF commu­ nity from Colorado watched the Rockies play at the third annual NF Night at the Rockies, which aims to raise funds for CTF and gather local NF families together to enjoy a great evening of baseball. The Desmond family presented a check for $16,000 to CTF which represented $1,000 for every run he scored in May. We are especially grateful to Ian and Chelsey Desmond for being so passionate and gener­ous in their continued efforts to help find a cure for NF.

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ANNUAL REPORT 2017

Ian Desmond with NF Hero Sloan

Board of Directors Richard Horvitz, Chair Tracy Galloway, Vice Chair Randall Stanicky, Treasurer Gabriel Groisman, Secretary Bruce R. Korf, MD, PhD, Chair, Medical Advisory Committee Linda H. Martin, Chair Emeritus Daniel Altman Robert Brainin William Brooks Daniel Gilbert John Golfinos, MD Matthew Hay Chad Leathers Richard Soll Stuart Match Suna John McCarthy Steven L. McKenzie Renie Moss Laura Perfetti Michael Peterson Kenneth Rudd Rachel B. Tiven Dave Viskochil, MD, PhD Peggy Wallace, PhD

Medical Advisory Committee Bruce R. Korf, MD, PhD, Chair Annette Bakker, PhD Jaishri Blakeley, MD Karen Cichowski, PhD Suzanne Earle Tracy Galloway Richard Horvitz Michael Morin, PhD Marco Nievo, PhD Roger Packer, MD Scott Plotkin, MD, PhD Ed Stern Stuart Match Suna Dave Viskochil, MD, PhD Peggy Wallace, PhD

Honorary Directors Suzanne Earle Michie Stovall O’Day Alan Robbins, MD Carolyn E. Setlow Nate Walker Ed Stern Pro Bono Counsel Allan Rubenstein, MD, Director of Medical Affairs Emeritus

Foundation Staff Annette Bakker, PhD, President and Chief Scientific Officer Research and Medical Programs Salvatore La Rosa, PhD, Vice President, Research and Development Vidya Browder, PhD, Basic Science Manager Kate Kelts, Patient Support Coordinator Pamela Knight, Director, Clinical Program Patrice Pancza, Research Program Director Heather Radtke, NF Clinic and Symposium Coordinator Traceann Rose, Director, Patient Engagement Development Michele Przypyszny, Chief Advancement Officer Katie Bloom, Director, Major Gifts Allison Cote, Regional Development Manager Emily Crabtree, Director, Development Operations Angela Dumadag, Regional Development Manager Channell Hogan, Regional Development Manager Keena Hutchinson, Development & Operations Coordinator Lolita Jerido, Regional Development Manager Julie Pantoliano, Senior Manager, Youth Development Kristine Poirier, Senior Director, Development Kim Robinson, Regional Development Manager Connie Sorman, Senior Manager, Volunteer Engagement Melissa Sosa-Longo, Vice President, Major Gifts Finance and Administration Catherine Blessing, Senior Director, Human Resources Monique Boucher, Gift Processing Manager Sarah Bourne, Director, Finance Albert Diaz, Director, IT and Salesforce Administration Latisha Maxwell, Gift Processing Coordinator Carey Milligan, Senior Accounting Manager David Riordan, Senior Director, Data and Strategy Marketing and Communications Simon Vukelj, Vice President, Marketing and Communications Rebecca Harris, Public Relations Manager Alissa Marks, Marketing Senior Manager Susanne Preinfalk, Design Director Vanessa Younger, Communications Senior Manager

NF legacy society

As of June 2018

In 2017, CTF announced the NF Legacy Society. These esteemed individuals have taken the extra initiative to ensure the future of NF research, by including the Children’s Tumor Foundation as a beneficiary in their will or trust, retirement account, or life insurance policy.

To learn more about making a planned gift, please reach out to Melissa Sosa-Longo, VP of Major Gifts, at msosa-longo@ctf.org or 646-738-8549.

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