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NF NEWS V ol ume I V, 2013

T h e N e w s l e t t e r o f t h e C h i l d r e n ’ s Tu m o r F o u n d a t i o n

Successful Benefit Galas Raise Funds for NF Research On October 26th, “The beNeFit: A Celebration to Beat NF” was held in Detroit and on November 7th, the Children’s Tumor Foundation’s Annual Benefit Gala was held in New York City. These events raised over $3 million for NF research. Detroit held its inaugural Children’s Tumor Foundation gala with the theme “A Glamorous Gatsby Affair.” Over 900 guests decked out in their favorite 1920s attire filled Cobo Center’s brand new Grand Ballroom, overlooking the Detroit River. The Great Gatsby himself would have been proud. Joined by local dignitaries, sports stars, and business leaders, Quicken Loans and Rock Ventures Founder and Chairman Dan Gilbert and Children’s Tumor Foundation President John Risner welcomed guests with heartfelt words and stressed the urgency of defeating NF. Featuring silent, live, and research award auctions, The beNeFit raised more than $2 million toward finding a cure for NF, of which every dollar will be invested efficiently and effectively.

NF Hero Victor Chukwueke

The highlight of the night was Victor Chukwueke, who was born in a small Nigerian village and endured nine major surgeries to remove the tumors on his face as a result of NF. Brought to the United States by missionary nuns, the teenager overcame Continued on page 15

The beNeFit: A Celebration to Beat NF

Accelerating the Delivery of Treatments to the Clinic Launched in 2008 and executed in two phases, the Children’s Tumor Foundation Neurofibromatosis Preclinical Consortium (NFPC) was a collaboration of six research centers, each using genetically-engineered animal models of NF1 and NF2 tumors with the common goal of rapidly advancing promising therapies to clinical trials. The NFPC for NF1 completed its second phase in June/July 2013. The NF2 group will conclude activities by the end of 2013. During the past five years (2008-2013), the Consortium collaborated to perform and complete 52 preclinical trials across different models. Seven trials are ongoing and will be completed in the next few months. These studies identified 16 drugs or drug combinations with promising efficacy. As a direct result,

ten clinical trials have been started and four additional ones are under evaluation or discussion to start soon. This is a HUGE success considering that typically only 2-5% of preclinical molecules enter into clinical development. The preclinical group has focused not only on finding novel targets for clinical trials, but also on testing optimal compounds and dosing schedules to better inform the clinic, and improving combinations with drugs that already give some positive anti-tumor effects. The only drawback with the current molecules is that they are often affecting similar mechanisms or pathways. That is why it is extremely important to continue this research, and the Foundation is pleased to no longer be alone in funding this effort.

For NF1, the Foundation, in conjunction with the Neurofibromatosis Therapeutic Acceleration Program (NTAP) at Johns Hopkins University, has agreed to continue funding the Consortium for the next three years (2013-2016). The new Consortium is now called the NF Therapeutic Consortium (NFTC). The objective of this consortium is to find promising NF-relevant molecules that are in development or on the market for other indications, test the concept in the animal models, and get the molecules to the clinic. For NF2, the current NF Preclinical Consortium will terminate at the end of the year. A follow-up consortium is currently under construction.

Children’s Tumor Foundation

board of directors

Stuart Match Suna Chair Linda Martin Vice Chair Aram Fuchs Treasurer Rachel B. Tiven Secretary Bruce R. Korf, MD, PhD, Chair, Medical Advisory Committee Suzanne Earle Chair Emeritus Jill Markland Chapter Council President Allan Rubenstein, MD Director of Medical Affairs Emeritus Daniel Altman Laura Ganio Bona William Brooks Colin Bryar Tracy Galloway Daniel Gilbert John Golfinos, MD Daniel Graeff Matthew Hay John McCarthy Steven McKenzie Lesley Oslica JoAnne Pastel Laura Perfetti Robert Schaffer Dave Viskochil, MD, PhD Nate Walker Peggy Wallace, PhD John Risner, President Honorary Directors Richard A. Horvitz Michie Stovall O’Day Harold Ramis Alan Robbins, MD Carolyn E. Setlow Ed Stern Pro Bono Counsel

Coming soon, new logo for the Children’s Tumor Foundation! Here’s a sneak peek.

Making a Lasting Difference

by John Heropoulos, Senior Vice President, Children’s Tumor Foundation

I turned 50 years old a couple of months ago. My parents, who are both in their mid-80’s and going strong, kept nagging me (nothing new) as I was approaching this milestone age about going to an attorney and having my last will and testament drawn up. They have mentioned this before, but after dutifully listening to them over the past several years, I would always ignore their advice. Well, there was something about turning 50 that made me start thinking about my mortality. I decided to make an appointment with a lawyer and take care of the business of writing my will. I sat down in his office and we filled out some initial paperwork. He then asked me to go to a private conference room with a blank sheet of paper and list the things that were important to me. He told me that all of my loved ones were already included in the draft of my will that he had drawn up. He wanted me to focus on other things that were precious to me and that I would want included in my will. I began to reflect upon my life and the first thing I wrote down was the Children’s Tumor Foundation. I am not exaggerating. Why did I think of this so quickly? The answer is simple. Because I feel deeply in my heart for all those who suffer from neurofibromatosis. Because I have seen many people in the NF community who have overcome unimaginable challenges in their lives. Because, unfortunately, I have also seen many lives cut short by NF. Finally, due to the years that I have worked at the Children’s Tumor Foundation, because I know that all funds, large or small, that are donated to NF research are wisely spent and directed to the best purpose: Ending NF. As I contemplate what I will leave behind, I find the deepest satisfaction and peace knowing that I will continue to be a part of a mission in which I believe, finding a cure for neurofibromatosis. The Children’s Tumor Foundation is proud to announce our Legacy Circle for individuals interested in making a lasting difference in the lives of those battling NF through bequests and other planned giving options. If you are interested in more information about this program and/or if you have or are planning to put Children’s Tumor Foundation in your will, please contact Garrett Gleeson at or visit


research news Drug Discovery Initiative Funding Awarded The Drug Discovery Initiative (DDI) awards program was designed to provide a critical early-stage doorway to the NF preclinical pipeline. These small scale awards, with a quick application and turn-around process, allow the Foundation to fuel the therapeutic pipeline for a relatively small investment. This year, the DDI program funded four proposals in the first round and CTF is in the process of evaluating with reviewers the second round of applications. The first four funded labs are:

Jean Nakamura, MD University of California San Francisco Identification of Novel Targets in NF1 Cancers by Drug Sensitivity Profiling TEST DIFFERENTLY MUTATED SUBTYPES OF NF1 TUMORS FOR DRUG SENSITIVITY TO DEFINE SPECIFIC SIGNALING PROFILE SIGNATURES AND EFFECTIVE DRUGS FOR CLINICAL APPLICATION The Neurofibromatosis Syndrome, characterized by loss of the NF1 gene, confers increased risk of cancer development. The investigators have developed a unique mouse model of cancers caused by NF1 loss. One of the goals of this study is to analyze these tumors to define how mutations in the NF1 gene lead to cancer, and how these processes can be stopped. The project uses a 94-compound drug library of established chemotherapeutic agents, representing multiple cancer signaling pathways, against the tumors generated to identify critical biological processes that work with NF1 to cause cancer. This information will help classify subtypes of NF1 tumors by characteristic mechanisms of cancer formation helping direct patients to appropriate and effective therapies.

Lei Xu, MD, PhD Harvard Medical School, Massachusetts General Hospital Effect of TGF-beta Blockade in Recurrent NF2 Vestibular Schwannoma TEST OF NOVEL DRUG IN COMBO WITH RADIATION THERAPY FOR VESTIBULAR SCHWANNOMA The hallmark of NF2 is bilateral vestibular schwannomas (VS). Ionizing radiation has become a standard treatment for VS. Despite the initial response to radiation, most patients with NF2 ultimately relapse and develop resistance to further radiation therapy. This project will focus on the effect of TGF-β, a particular cell signaling pathway, as the most potent inducer of fibrosis in general and fibrosis correlated with hearing loss in VS using an established VS model that mimics human disease by progressing after radiation. The data generated in this proposal will provide insights into the potential use of TGF-β blockade as a new adjunct to radiation therapy.

Cristina Fernandez-Valle, PhD University of Central Florida Creation of Human Merlin-Null Schwann Cells for NF2 Studies FIRST ATTEMPT TO EMPLOY HUMAN SCHWANN CELL LINES FOR DRUG SCREENING - NOW MOST RESEARCHERS USE MOUSE LINES A major roadblock to developing drug therapies for NF2 is the lack of human Schwann cell lines with reduced or no expression of the merlin tumor suppressor. The investigators of this proposal are both Schwann cell biologists with combined expertise in NF2 and the cultivation of human Schwann cells. Together they propose to create a set of human Schwann cells having reduced levels of merlin protein using two different strategies. The cell lines will be characterized and their response to a panel of compounds that have known anti-proliferative effects on mouse merlin-deficient Schwann cell lines will be carried out. The end result should be creation of human Schwann cell lines lacking merlin that can be used in larger drug screens.

Charles W. Yates, MD Indiana University School of Medicine Testing Periostin-Cre NF2 Conditional Knockout Mouse for Potential Treatment Compounds Useful for NF2 NEW NF2 ANIMAL MODEL GENERATION: FIRST NF2 ANIMAL THAT DEVELOPS VS AND BECOMES DEAF, NEED FOR VALIDATION AS PRECLINICAL MODEL – USE EXISTING EFFECTIVE DRUGS THAT WERE TESTED IN THE CLINIC AND SEE IF THE MODEL PREDICTS CORRECTLY This group developed a genetically engineered mouse (a mouse with changes to the DNA similar to the genetic changes seen in people with the disease) by causing the gene, merlin, which is responsible for development of NF2, to have mutations early in development. Changes in the gene in this mouse led to some of the tumors similar to those most commonly seen in humans (vestibular schwannomas, which are otherwise known as acoustic neuromas). Using this mouse as a model would be helpful because testing compounds developed to treat NF2-related tumors could also test some of the specific endpoints similar to what is seen in people. To determine if this is a useful model, the group proposed testing AR42, a specific class of medication called an HDAC inhibitor and a compound that in lab studies of cells and other mouse models may potentially be useful in people with NF2 because it reduces or shrinks the size of vestibular schwannomas. The project will examine if the treated mice will respond with preservation of hearing and decrease in tumor size over a three month period of treatment. 3

research news Helping Patients Directly Children’s Tumor Foundation Funds Testing of Hearing “Apps” for NF2 Patients One of the biggest problems facing people with NF2 and hearing loss is that they begin to lose their ability to communicate in the way they had become accustomed. “Apps” that translate speech to text, or text to speech, are one way to make communication easier for these individuals. (“Apps” —short for “applications”— are software programs that can be downloaded from the Internet for use with smartphones or tablets.)

speech to Text

TEXT to Speech

To help NF2 patients decide which apps might suit their needs,


Amanda Bergner, MS CGC, of the Johns Hopkins Comprehensive Neurofibromatosis Center, and Jennifer Smart, PhD, of the Towson University Department of Audiology, Speech-Language Pathology and Deaf Studies, tested existing apps under a Contract Award from the Children’s Tumor Foundation. The apps tested are for Apple products. In the future, Bergner and Smart hope to expand their work to include apps for Android products.



(Available on iTunes)

(as of 7/2013)

For which devices?

Needs WiFi to operate?

Locabulary Pro


iPhone, iTouch, iPad


Proloquo 2Go


iPhone, iTouch, iPad


TouchChat with WordPower

Large bank of pictures; stores recently used phrases; speech sounds more natural; good for people with limited dexterity


iPhone, iTouch, iPad


Many voice “personality” options; pictures appealing to kids; good for people with limited dexterity; can arrange stored phrases by topic



iPhone, iTouch, iPad


Good for people with limited dexterity; personalizes to user over time; speech sounds more normal; can write freehand or type





Easy to use; good for people with limited dexterity

Verbally Premium




Much better voice quality than free version of Verbally; can edit and save frequently used phrases

Dragon Dictation


iPhone, iTouch, iPad


Can see text appear soon after speaking; can email the text easily

Voice Dictation


iPhone, iTouch, iPad


Easy to change font size (if vision impaired)



iPhone, iTouch, iPad


Better for shorter dictations

PaperPort News




Best for annotating documents; can be used in conjunction with Dragon Dictation or Voice Dictation

strengths Uses pictures or text; easy to learn to use; can modify font size easily (if vision impaired)

“Ou a st com peo and mig abe

Children’s Tumor Foundation Staff Scientist, Kim Scobie, PhD

“Our vision for this project,” said Bergner, “is that it is a stepping-stone to open the dialogue within the NF2 community about the unmet communication needs of people living with this condition. We welcome feedback and ideas for other aspects of communication that we might explore.” Amanda Bergner can be contacted at



Basic; not a lot of options


Keyboard layout is alphabetical (not QWERTY layout)

ng to ange

Time-consuming to personalize setting; voice quality poor

to te

No spellcheck or autocomplete

Speech quality could be better; does not store recently typed phrases


Does not store recently typed phrases



No way to dictate into a document

The New Data Warehouse • Data is needed to drive research, to understand disease, and to find treatments. • Data leads to publications, to patents, and to funding. • Generating data has become cheaper, faster, and easier. Sequencing the human genome of one individual in the 1980’s cost approximately one billion dollars and took six to eight years. Today, a human genome can be sequenced in a day or two at a cost of roughly $3,000-5,000! Therefore, generating data is not a hurdle anymore. Now the challenge is how to process and integrate data so that one can actually learn about disease and disease progression. A lot of data already exists and much new data is generated with funding from the Children’s Tumor Foundation. In order to make sense of that data, and in order to store the data in a safe, central, and neutral place, the Foundation is investing in the construction of a data warehouse. This data warehouse project will be led by Kim Scobie, the Foundation’s new Staff Scientist. Data warehousing is part of the global shift by successful foundations towards making research findings openly available and free of charge to readers. Making research data more accessible will encourage collaboration, support ongoing innovation, and identify gaps in current data sets. The Children’s Tumor Foundation is joining the movement to make data available with the aim of accelerating the identification of treatments and a cure for NF. Its team of scientists and technology consultants have been evaluating a number of companies that specialize in the aggregation and sharing of data. The Foundation’s goal is to gather, integrate, and contextualize public and CTF-funded data, and it looks forward to using the data warehouse as an effective tool in the ongoing fight against NF.


research news Compound Scouting Service for Researchers The Children’s Tumor Foundation has initiated a very useful program for researchers. Marco Nievo, the Patent Attorney from CTF, and Salvo La Rosa, the Foundation’s Research and Development Director, have set up a service for NF scientists who are looking for compounds and drugs to be tested. Their medicinal chemistry background and expertise in getting collaboration agreements finalized, together with access to specific information databases, allowed for successful interaction with a few academic centers and external groups. This has

helped researchers get their hands on quality compounds in a short timeframe and allowed them to set their experiment with molecules which have the best chance to deliver a good hypothesis and become a potential treatment for the clinic. Furthermore, each compound’s mechanism is investigated and potential alternatives are identified and proposed to the scientists. Follow the progress of the Children’s Tumor Foundation in its mission to deliver effective treatments to the clinic, and to improve the overall health and well-being of all who live with neurofibromatosis:



to do

Bring treatments to patients

NF Preclinical Consortium informed or resulted in 14 clinical trials

NF Therapeutics Consortium for NF1 and Synodos for NF2

Support Research and Development (R&D) service to academia

Compound scouting service - help find the best rather than the one that is available – by R&D Director

Expand R&D service

Material transfer agreement service by CTF Patent Attorney Foster/fund collaboration between academia and industry

Two consortia of academia/industry collaborations show huge promise

Increase funding

Create way to share data between researchers/clinicians

Scientist hired to lead data warehouse project

Select best data warehouse and populate with data

Create practical guide for those receiving a new diagnosis of NF1

“Newly Diagnosed with NF1: A Guide to the Basics” will soon be available online and in print

A similar guide for NF2 and schwannomatosis

Find ways to improve quality of life for NF families now – do something that impacts families directly

Internet Support Group Study to discover best practices for online groups

Use study results to set-up effective online support groups

NF Conference Report Accepted for Publication The Children’s Tumor Foundation is pleased to announce that the American Journal of Medical Genetics, a highly regarded peer-reviewed publication, recently accepted a detailed report on the Foundation’s 2012 NF Conference. The article,


“Children’s Tumor Foundation Meeting 2012: Translation of the Basic Understanding of the Biology and Genetics of NF1, NF2, and Schwannomatosis Towards the Development of Effective Therapies,” will appear in an upcoming issue.


HOW DOES THE NF ENDURANCE PROGRAM Learn more about our different event typesWORK? that you Learn more about our different event types that you can join in 2014! can join in 2014!



Our Premier Events Program gives you the opportunity to race in some of the most popular events across the country and internationally! NF Endurance staff works with premium races to become official race Charity Partners and obtain guaranteed entry for our participants, which allows you to get into those sold-out races.

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HOW IT WORKS: Sign up for the NF Endurance team and commit to a fundraising minimum (varies by race). You’ll receive free race entry, a training plan and personalized coaching from our team of certified coaches, your own fundraising webpage, one-on-one support from CTF staff, and an array of race weekend VIP amenities.

With our Community Events Program, CTF staff guides volunteers to recruit participants, encourage fundraising, and plan race weekend activities. Most events offer a variety of distances that appeal to the whole family.

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Don’t see your local race? You can help bring the NFE team to your community by starting a volunteer committee! CTF staff will give you the tools and support you need to make your event a success.


HOW IT WORKS: Choose a race from our list of Community Events and join the team. You register for the race on your own, but if you commit to a fundraising minimum you can receive race entry reimbursement (as well as training).

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Our Kids Program has taken off in 2013 and there are already a number of kids events scheduled for 2014!


HOW IT WORKS: Sign up to run, bike, or swim at one of our upcoming team events or choose your own race near you. Each child will receive a team shirt and fundraising kit to raise what they can and earn cool prizes...

ev kids


...OR parents, teachers, or school administrators can bring the Kids Program into your school! CTF staff can work with you to plan and execute an event tailored to your interests and needs, whether it's a 5K in your town park, short-distance dashes during gym class, or a school-wide field day.

See our list of 2014 events on


HOW IT WORKS: Choose an event that’s not already on our Premier or Community Events list. Register for the race on your own, then sign up with the NF Endurance team to receive your team shirt, personal fundraising page and support, and other team benefits. There is no fundraising minimum, but if you commit to a fundraising goal you can receive free virtual training, race entry reimbursement and be eligible for recognition and awards.

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The world is your oyster with our Choose Your Own Event Program! Nearly every week, we have athletes racing in local 5Ks, half marathons, triathlons, relays, and other events of their choice to raise funds and awareness for NF.

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QUESTIONS? Contact us at



To our NF Walk organizers and volunteers: There is an African proverb that says, “It takes a village to raise a child,” but to organize an NF Walk, it takes both a village and a big heart. As I reflect upon the 39 NF Walks that took place in 2013, I recognize that none of them would have been possible without YOU – the dedicated organizers, committee members, and volunteers who coordinated each event. Thank you for your commitment to supporting the NF community. For months on end, you took time out of your busy schedules to conduct conference calls, organize friends into planning committees, cajole spouses into running the grill on walk day, and pull all-nighters stenciling letters on the backs of NF Hero capes while cupcakes are baking in the oven. You are the ones making phone calls, writing emails, mailing letters, hanging posters, and even going door-to-door to ask sponsors for refreshments, raffle items, donations, and whatever else it takes to make your event a success. We know that organizing an NF Walk is time-consuming, and at times stressful, and we are truly grateful for your dedication and hard work. Because of you, nearly 10,000 NF Heroes, super siblings, families, and friends came together at NF Walk events in 2013, some meeting others with NF for the first time. You are sometimes the first point of contact for a mother or husband or sister seeking support, and your shoulders are the ones they cry on. You give them friendship and you give them hope, probably more than you know. And you don’t do it alone. To all the husbands, wives, friends, siblings, coworkers, and others who show up on walk day ready to work, thank you. To the volunteers who set up at 6:00 a.m. and don’t leave until clean-up is completed at 2:00 p.m., thank you. To those who have mastered the registration procedure, learned new face painting techniques, and cheered until their voices grew hoarse, thank you. Organizers, committee members, volunteers, helpers in jobs big and small—from the NF Walk team, the Children’s Tumor Foundation, and on behalf of the entire NF community, thank you. You are our heroes. Traceann Adams Program Director, NF Walk




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children’s tumor foundation

Hope for the

s y a d i l o H E



Thanks to donors like you, there has been more progress in NF research and awareness in the last five years than the previous fifty. Clinical trials have increased from a handful to more than 30 today; there are 44 NF Clinics in the network, with 14 clinical trial centers; there are quality online resources for newly diagnosed patients; and there are more NF Walks, symposia, and other patient support opportunities. With your support, the Foundation can continue this progress. Please visit to participate in the Hope for the Holidays campaign, and include “EOY13Hope” in the note area so we can properly acknowledge your gift.



Stories of Nf: Katti and Aubrey Sorboro “I was diagnosed with neurofibromatosis type 2 (NF2) at nine years old, when it surfaced as a first generation genetic mutation. We had no idea what it was at the time, and it took numerous doctor appointments, surgeries, and years to diagnose. Living with NF2, I know first-hand the extremely limited, ineffective options that exist for treatment. Too often patients or loved ones are left managing their own care simply because not enough doctors know about or understand the complexities of the disease. Most people with NF hear doctors say, ‘Wait, watch and hope.’ But organizations like the Children’s Tumor Foundation are trying to create effective options for those with neurofibromatosis. As an NF patient myself, I am personally dedicated to a cure and have been trying new and experimental drug treatments, not so much for my own well-being, but to help pave a brighter way for others who are afflicted with this disease, including my seven-year-old daughter, Aubrey. Hopefully research into NF will lead

to more treatment options for my daughter when neurofibromatosis starts affecting her. Aubrey’s NF2 was diagnosed early on as there is a fifty percent chance that a child will inherit the gene mutation from a carrying parent. Today, we are trying to stay a step ahead of Aubrey’s diagnosis and continue my treatment as we travel from Cleveland to Boston to meet and work with doctors who truly understand neurofibromatosis. NF does not get as much attention as other destructive diseases, has no cure, and has few treatment options. But we can help change all that and I intend to try, for me, for Aubrey, and for the millions of NF families around the world.”

9 The Checkered Flag Waves on the 2013 Season While there are a couple of races remaining in the 2013 season, the Foundation would like to thank all of its friends and supporters in the paddock who have made it possible for more than 200 NF Heroes to experience the excitement and joy of joining the Children’s Tumor Foundation at the race track: Park Place Motorsports, GMG Racing, Compass 360 Racing, Pirelli North America, Grand-Am Road Racing, Pirelli World Challenge Series, Wireless Zone, Porsche Motorsport North America, Audi Customer Sport Racing, Oakley, SPEED Channel/FOX Sports, SaalGood PR, Speedcom, The Media Barons, VisionX, TORC Traxxas Off-Road Series, Daytona International Speedway, Langley Speedway, Lime Rock Park, SCCA, and the amazing drivers who give their time freely at each and every race: Al Carter, Chuck Cole, Eric Curran, Patrick Dempsey, Nick Esayian, Ryan Eversley, Daniel Graeff, Jason Hart, Shea Holbrook, Patrick Lindsey, Patrick Long, Michael Marsal, Rafael Navarro IV, Jim Norman, Spencer Pumpelly, Mike Skeen, James Sofronas, Craig Stanton, Seth Thomas, Brian Till, Karl Thomson, Will Turner, Mike Vess and the rest of the guys and gals that always make time to say hello to our kids.

Racing4Research at Daytona is Just Around the Next Turn There is still time to sign up as an NF Hero for the upcoming 2014 Rolex 24 at Daytona weekend on January 24-26. Join the team in Florida for all of the fun and excitement of race weekend PLUS see your NF Hero’s name on the Children’s Tumor Foundation racecar. Visit or contact to learn more!




meet the staff

meet the board

Rosa Amelia Perez

Lesley Oslica

Hometown: Arecibo, Puerto Rico

Hometown: Little Rock, AR

Current Town: Brooklyn, NY

Current Town: Conway, AR

Education: Certificate in Banking from the American Institute of Banking. I am also a New York State Certified Notary Public. Work with the Foundation: I manage the office and try to reduce the staff’s stress level by assisting in any way needed. Favorite Experience with the Foundation: My favorite experience has been the growth I have seen in our research and our staff. Favorite Hobby: Dancing, listening to music, cooking, and reading **Rosa recently celebrated her ten year anniversary with the Children’s Tumor Foundation. Congratulations Rosa! Many thanks for your dedicated service to the Foundation and the NF community, it is much appreciated!

Education: BA in Theology, with emphasis in Sociology, from St. Gregory University Work with the Foundation: I have participated in NF Endurance events since 2001 including 12 marathons, 17 half marathons, several sprint triathlons, and the Race Across America bike ride in 2011. In addition, our family has been hosting the celebratory finishers’ tent for the NF Endurance team at the Little Rock Marathon since 2007. In 2005, I developed CTF’s Arkansas Chapter which led me to hold symposiums and support group meetings, to volunteer at the NF Clinic, and to organize fundraising events including our annual Red Carpet For Research – Dancing with Our Stars Gala. I am proud to report that this year’s event broke records in terms of attendance, over 350 guests, and funds raised, over $100,000. Also, after traveling to Indianapolis for the Brickyard 400 and cheering on the racecar with the Children’s Tumor Foundation logo, our family is excited to participate in the upcoming 2014 Racing4Research event – the Rolex 24 at Daytona. In addition, our family helps host two golf tournament fundraisers per year. Favorite Experience with the Foundation: My favorite experiences surround attending the NF Forum and NF Conference every year and learning about the progress made in NF research. Being a Board Member allows one to follow the research even more closely, and learning that an initial $25,000 grant can grow into a half million dollar grant, if a researcher continues their work through other sources, has been very inspiring. It motivates me a great deal to know that our fundraising can have a direct impact on research. I also really enjoy meeting so many wonderful families in the NF community. While none of us would choose to be in this “NF club,” having such remarkable people to share the journey with makes it a little more bearable. Favorite Hobby: I enjoy traveling, running marathons, riding bikes, and other endurance sports like triathlons and duathlons. Also, while I don’t consider it a hobby, my favorite thing to do is spend time with our adult children and extended family.

Day trips from camp included the Olympic Park in Park City with its mountain toboggan run, super zipline, miniature golf course, and other fun activities. The Hogle Zoo was a special treat this year with its new resident polar bear who demonstrated his swimming skills to the delight of our campers. And a day at the waterpark, always a favorite, was the perfect venue on a 100-degree summer day!

17th Annual NF Camp: Friends Old and New Almost 80 campers from more than 25 states across the U.S. and Canada gathered for fun and friendship at the 17th annual NF Camp at Camp Kostopulos in Emigration Canyon, Utah. Every day was filled with a variety of activities and challenging exercises emphasizing trust and teamwork. While at camp, which has a wonderful array of facilities in a beautiful natural setting, everyone had a chance to conquer the high ropes course and the rock climbing wall, experience the thrill of the zipline, ride horses in the state-ofthe-art riding ring, and enjoy the pool and the fishing pond.

The Children’s Tumor Foundation is grateful to the professional and caring staff at Camp Kostopulos, the dedicated and cheerful volunteers, and the generous NF Camp supporters who care deeply about this very important program. Because of their commitment, the NF Camp program continues to make a meaningful difference in the lives of children and teens living with NF. Make plans to attend NF Camp 2014! Dates will be announced soon and scholarships will be available. For more information please visit, or contact Julie Pantoliano at


regional news

Great Events from Across the NF Community The Foundation has a presence in nearly all 50 states and facilitates local patient support groups, medical symposia, and fundraising events. Learn more about the Children’s Tumor Foundation Chapter in your area by visiting .

Connecticut The first annual Putnam NF Walk took place on September 28th. Nearly 100 walkers participated and raised over $21,000 to fight NF. The event, organized by Rhianna Curotto and her committee, included a yoga warm-up and the presence of a local fire truck for the children to explore.

alaska The Children’s Tumor Foundation’s Alaska Chapter hosted a garage sale July 19-20 in Tok, AK to raise funds for neurofibromatosis research in honor of NF Hero Holly Beeman

massachusetts On October 19th, over 200 people gathered for the Annual New England Fall Gala at the Marriott in Cambridge, MA to celebrate the work of Dr. Karen Cichowski and the giving spirit of Yoga Reaches Out. The night was filled with great food, dancing, a silent auction, and a live auction led by Susan Wornick from WCVB-TV. The event raised more than $90,000 for NF research!

arkansas Board Member Lesley Oslica hosted another hugely successful Dancing With Our Stars event. This year, the evening raised $101,000, a new record and a growth of more than $25,000 over last year. More than 350 people attended, and Rick Fleetwood, CEO of Snell Prosthetics, won the coveted mirror ball trophy.


illinois “Cole’s Crew,” which consists of NF Hero Cole Rutter, his family, several teachers with whom his father works, and even the mayor of his hometown, ran the bingo tent at the annual Sugar Grove Corn Boil to raise funds for the Foundation. They worked a ten hour shift and raised $500 and a lot of NF awareness.

Texas The Nevitt family, longtime supporters of the Foundation, hosted a cocktail party on September 7th in San Antonio, TX. The event was a great success and raised over $5,000.

california Actress Monica Potter of NBC’s “Parenthood “, a longtime supporter of the Foundation, worked with CTF staff members Kelly Mills and Kim Robinson to film a public service announcement about the Los Angeles NF Walk. To view the video, please visit

oregon On August 3rd, old high school friends reunited to “Stand Up To NF.” Inspired by his friend Kelly’s daughter, NF Hero Natalie Peterson, Kevin King created a stand up paddle board event to bring awareness about NF to his community in West Linn and Lake Oswego, Oregon. With the help of Gorge Performance, who donated 33 stand up paddle boards, Sean Owen, and Abby’s Army, “Stand Up To NF” took place on the Willamette River, was attended by over 136 people, and raised more than $6,700.


maine Both the Brunswick NF Walk and the Biddeford NF Walk took place in September in honor of NF Hero Natalie Ricker, and raised over $9,000 for neurofibromatosis research.

utah New york

Colorado The annual Denver NF Walk was held on September 8th at Clement Park. The event raised almost $30,000 and featured a kids’ carnival, live music, and costumed characters.

The sixth annual Ladybug Benefit, organized by Foundation Board member Laura Perfetti on behalf of her NF Hero daughter Julia “Ladybug” Perfetti, took place on October 3rd at the Swan Club in Long Island, NY. The evening included beautiful centerpieces donated by NF mom Cristina Spoto at Bella Flowers, wonderful silent auction items and raffle prizes, and entertainment by the band Shades of Red. This event raised over $42,000 for NF research.

The Salt Lake City NF Walk took place on August 24th at Sugarhouse Park. The event, which raised $11,800, included a raffle, a DJ, and special appearances by princesses, Spiderman, and other costumed characters.

ohio Sara Cadamia, a nurse in the emergency department of the Cleveland Clinic Main Campus, and her coworkers organized a nacho bar and hot dog fundraiser to gather donations for the Children’s Tumor Foundation on behalf of Sara’s 15-month-old son, Kyle, who lives with NF1. In just four and a half hours they raised $1,043. Sara says, “My husband, Chris, and I are originally from Hawaii and are living here in Cleveland without our family nearby. We are grateful for the love and support that our Cleveland Clinic family has given us. Our little star Kyle continues to shine brighter every day and he is grateful for all of his surrogate aunts and uncles.”

alaska CTF’s Alaska Chapter hosted their Annual K-Bay 5K in honor of NF Hero Leo. The event was held on August 23rd in Homer, AK and raised over $2,200.


regional news new hampshire “K’s Ride For a Cure,” the Third Annual Motorcycle Ride and Family Fun Day, took place on July 21st in Salem, NH and raised $1,000. All involved enjoyed a wonderful day of community, games, food, and entertainment for both children and adults.

washington, DC The second annual CureNFwithJack DC Golf Classic took place on September 27th at Westfields Golf Club in Clifton, VA. The event was a huge success raising over $65,000 for CTF – including a large donation by the Stewart Rahr Foundation. Golfers enjoyed a fun-filled day of contest holes, raffles, a silent auction, and an uplifting evening reception. The tournament was held concurrently with an Orbital/Periorbital Plexiform Neurofibroma (OPPN) Conference co-chaired by Dr. Robert Avery of the Children’s National Medical Center and Dr. Brigitte Widemann of the National Cancer Institute. Many thanks to Matt Benson who, although he has no connection to NF, worked tirelessly to create this event.

Oregon The Portland NF Walk took place at Oaks Park in Portland, OR on July 28th with approximately 40 volunteers and 150 attendees. In addition to the 5K walk through beautiful Oak Bottoms, which includes a small lake and shores covered with lavender, there was a raffle, food, a hula hoop contest, and a demonstration of hula dancing. The afternoon was enjoyed by all and the event raised over $24,000.

Alabama Virginia The Second Annual Chesapeake Bay Cobia Classic fishing tournament was a huge success with nearly 800 people participating and more than $21,000 raised. Many thanks to longtime CTF supporters Jen and Michael Gundling for their tireless efforts in coordinating the event. “This year’s tournament was a great time and most importantly a great success for the charity,” said Jen Gundling, president of Friends of the Children’s Tumor Foundation. “It would not have been possible without our sponsors and volunteers, especially Whitehouse Cove Marina and Wynne Ford Volvo.”


The University of Alabama at Birmingham’s (UAB) Department of Genetics held their annual symposium entitled “NF Family Day: Learning and Thriving Together” on September 7th. The event was co-sponsored by the Children’s Tumor Foundation and coordinated by Alabama Chapter President Renie Moss and Clinic Coordinator Ravin Williams. Approximately 80 people from Birmingham and surrounding areas participated in this half day seminar. Many significant topics were covered including a session by Children’s Tumor Foundation Clinical Program Manager Pam Knight on the importance of the NF Registry.

NF News is the official publication of the Children’s Tumor Foundation and is published quarterly. All issues are available on our website at Please direct any questions or feedback to the editor (listed below). The Children's Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. NF affects one in every 3,000 people, more than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined. The Children’s Tumor Foundation funds critical research into neurofibromatosis. In addition to benefiting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community. For more information, please visit Editor Mary Vetting, Foundation Staff John W. Risner, President L-R: Mr. Allen Salmasi, Mr. Bailey Gribben, and Dr. Bruce Korf

Successful Benefit Galas Raise Funds for NF Research Continued from page 1 innumerable obstacles. For his spirit and courage, Victor was awarded the first-ever Children’s Tumor Foundation Strength and Honor Award by event organizer and passionate Foundation advocate Jennifer Gilbert. Victor is now enrolled in medical school at the University of Toledo and plans to become a missionary doctor. A “Speakeasy” afterglow party with desserts, cocktails, strolling entertainment, and dancing followed the main event. Over 450 people attended the New York City Gala, held in the ballroom at Cipriani Wall Street, raising more than $1 million. The attendees were treated by the participation of several special guests. Emmy award winning television journalist Jane Hanson served as master of ceremonies. The Villalobos Brothers, a quartet of virtuoso violinists and singersongwriters, provided the musical entertainment for the evening, and auctioneer James Donahower led the live auction with humor and enthusiasm. The Foundation was honored to award OncoSynergy, Inc., with Mr. and Mrs. Nicole and Allen Salmasi accepting, and Dr. Bruce R. Korf, MD, PhD with the Children’s Humanitarian Award, and to name Mr. Bailey Gribben the Children’s Tumor Foundation Ambassador for the coming year. OncoSynergy, Inc. is a privately-held startup whose mission is to radically improve health outcomes for patients by addressing unmet needs in neurofibromatosis and oncology. Dr. Bruce Korf is chair of the Department of Genetics and director of the Heflin Center for Genomic Sciences at the University of Alabama at Birmingham (UAB). Bailey Gribben, a 16-year-old, honor roll student from Levittown, N.Y., was diagnosed with NF2 in 2008 and has bravely battled through several brain surgeries this year. The Children’s Tumor Foundation is grateful for a successful gala season, which also included a benefit in Boston and the “Dancing with Our Stars” event in Arkansas (see the Regional News section of this newsletter for more information) as it greatly advances the NF community toward its shared goal of ending neurofibromatosis forever.

Research and Medical Programs Annette Bakker, PhD, Chief Scientific Officer Pamela Knight, Clinical Research Manager Salvatore La Rosa, PhD, Director of Research and Development Patrice Pancza, Research Program Director Sarah Rosenberg, Program Assistant Kimberly Scobie, PhD, Scientist Development and Volunteer Relations John Heropoulos, Senior Vice President Traceann Adams, Program Director, NF Walk Angela Auzston, NF Endurance Mgr, Community & Youth Events Jill Beck, Program Director, Racing4Research Jessica Beckerman, NF Walk Coordinator Carolyn Castellano, Project Director, Major Events Chrissie Connors, NF Walk Coordinator Sarah Coulam, Program Director, NF Endurance Emily Crabtree, NF Endurance Manager, Logistics Alison Désir, Community Relations Coordinator Angela Dumadag, NF Endurance Manager, New York Garrett Gleeson, Program Director, Major Gifts Ben Leathers, Cupid’s Undie Run, Apparel Logistics & Reporting Chad Leathers, Program Director, Cupid’s Undie Run Alissa Marks, NF Endurance Manager, Marketing Kelly Mills, Community Relations Regional Manager Sarah Morley, Cupid’s Undie Run National Events Coordinator Marissa Moscatello, Community Relations Coordinator Julie Pantoliano, Community Relations Coordinator Kristine Poirier, Community Relations Coordinator Lauren Walsh, NF Endurance Manager, Chicago

Public Education and Patient Advocacy Simon Vukelj, Communications Director Mary Vetting, Communications Associate Finance and Administration Judi Swartout, Chief Financial Officer Mohamed Amin, Database Assistant Monique Boucher, Database Supervisor Sarah Bourne, Accountant Julie-Anne Mao, Director of Technology Danielle Meyer, Technical Support, National Programs Rosa Amelia Perez, Project Administrator Vanessa Younger, Finance Program Assistant


95 Pine Street, 16th Floor New York, NY 10005 800-323-7938


Laura Barbieri New York, NY, Lives with NF2



6th Annual

NF Forum

Held in conjunction with the NF Conference

I joined the registry because...

“There is power in numbers.” join the NF registry and You can help end nf

June 6-8, 2014 Omni Shoreham, Washington, D.C.

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Children's Tumor Foundation Newsletter, Volume IV  
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