NF News • Children’s Tumor Foundation | 1

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

Jack Burke wants to be the busiest man in the world. That may seem like a tall order for a six-year-old but it doesn’t deter this NF Hero whose desired future professions range from doctor to actor.

But despite his audacious ambitions and upbeat attitude Jack hasn’t had the easiest early years. Diagnosed with NF1 at two-years old due to café-au-lait spots and vision

difficulties it was later discovered that Jack also had a plexiform neurofibroma on his left eye orbit. Jack’s parents, Beth and Jake, have him monitored regularly by physicians and work hard to ensure he receives the very best care. But they’ve also taken to building the NF community in their hometown of Atlanta and raising funds for research.

“When we first got the diagnosis we didn’t know what to expect,” said Beth. “We kept it close to our vest and didn’t tell a lot of people. Then we realized the only way we could cure our hopelessness and helplessness was to do something about it.

Beth contacted Stephanie Yolish at the Foundation and the two began planning a symposium at Emory University Hospital. They invited Dr. Bruce Korf and sent a mass email to

Jack Burke, NF Hero, Busy GuyI N T H I S I S S U E

Foundation Hosts Informational Dinner .......................... 2

Accelearting NF Research Progress Through Strategic Planning ................ 3

CTF Funds Four New Clinical Research Awards ................................ 5

National Programs............................. 6

Regional News .................................... 12

Racing4Research Is Coming To Your Town ......................................... 13

XXXXXX ................................................. 16

www.ct f.org

NF NEWSWINTER 2011

Driving ResearchThe Foundation's Racing4Research program shifted into high gear in January at the 2011 Rolex 24 Hours At Daytona.

Greeted by near perfect Florida weather, more than 200 NF families and suppor ters converged on Daytona for a jam-packed weekend. The festivities began on Friday night with our annual team dinner where we honor the Racing4Research drivers, sponsors and NF Heroes. The evening provided a chance for new and returning families to introduce themselves and make new friends, and also set the stage for the exciting race weekend that lay ahead.

Saturday began with the Racing4Research meet-and-greet at the #4 TRG Children's Tumor Foundation Porsche garage space where the NF Heroes enjoyed a private

autograph session with the team and had a chance to "kick the tires" before the car went out to the star ting grid. Our team included a remarkable group of drivers, including NASCAR star Kenny Wallace, returning R4R veterans Daniel Graeff and Ron Yarab, and new drivers Ryan Eversley and Rich Zahn, each of whom spent time with our NF Heroes both on and off the track. The TRG/CTF Porsche featured the names of a record-setting 91 NF Heroes and those in attendance signed the car

continued on page 8

continued on page 8

Jack speaking at the Friday night team dinner

NF Heroes on the starting grid at the Rolex 24 at Daytona

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Foundation President George Orfanakos

FROM THE PRESIDENTA NOTE FROm NEWlY APPOINTED CHIlDREN’S TUmOR FOUNDATION PRESIDENT GEORGE T. ORFANAKOS

When I took my seat for the first time in the President’s office on monday, January 3, I considered what it must have been like when my two predecessors, John Risner and Peter Bellerman, began their first days on the job. When Peter started, in the early days of the Foundation, there were very limited resources

devoted to NF, few doctors knew what NF was, and the gene mutations that cause the various forms of NF were a mystery.

Thanks to Peter’s work and all the pioneering NF researchers (and supporters of the Foundation), when John was appointed President in 2005, a large body of discovery research (the basic research that allows scientists to understand the functioning of a disorder) had been collected but much needed to be done in translating that knowledge into treatments, and the Foundation was struggling in the wake of the economic turmoil of the early 2000's. I had the good fortune of joining John shortly after his hiring and together with the dedication of our Board, staff, and most importantly all of you, we oversaw a period of incredible advances in NF research coupled – not coincidentally – with the largest period of growth in the Foundation’s history.

In five short years the Foundation established and entered 50 drugs into the pre-clinical pipeline, we created a 44-site NF Clinic Network to improve clinical care, and most recently created the NF Preclinical Consortium, and a Patient Registry and BioBank that will integrate the knowledge base we have built with the relationships we have established with pharma and biotech companies.

It is because of the growth and collaboration of a focused NF community that we now live in a time of great optimism for treatments and improved care for those living with NF. As Dr. Bruce Korf recently said “a child born today with NF is in a much better place than a child born fifteen or twenty years ago.” Similarly, adults living with NF today have many more management options and resources because of the accomplishments of the Foundation and our supporters.

So as I took my place that morning and considered the challenges ahead, I was inspired by our accomplishments and imbued with a profound sense of responsibility to carry that momentum forward. For me, and for us, the goal has not changed. Our search for treatments and a cure for NF continues with even greater passion and zeal. For in the end, our ultimate success will not be judged by drugs placed in clinical trials or publications in medical journals but by therapies given to individuals to treat and eventually cure the challenges they face because of NF. I look forward to working with all of you toward that goal.

Foundation Hosts Informational DinnerOn January 18, on the eve of the 2011 Strategic Planning meeting, the Foundation hosted a dinner at the New York Yacht Club. The evening featured presentations and discussions with NFPC Director Kevin Shannon, NFPC NF2 Director marco Giovannini, and Jay Gibbs of AstraZeneca and the NFPC external advisory committee. The Foundation would like to extend our appreciation to Chairman Stuart match Suna and his wife Vicki, for sponsoring the evening, and all who were able to join us for this important event.

(l-r) Dr. Kevin Shannon, Dr. Marco Giovannini, Dr. David Viskochil, and Jay Gibbs.

NF News • Children’s Tumor Foundation | 3

research news

Drug Discovery Initiative Awards Program Initiated: Fall 2006Program Structure: One-year Awards up to $30,000 to test a candidate NF drug treatment on NF cells or mice. The DDI Awards program has a number of features attractive to researchers - multiple deadlines each year; preliminary data is not needed; rapid review and funding; and an online DDI Toolbox where researchers and companies can listing drugs and resources such as cells and mice they can share for NF research. What Has Been Funded: As of December 31, 2010, a total of 39 DDI Awards totaling $970,500. Outcomes: A key success measure has been that a number of DDI Awards have secured significant amounts of follow-on funding from other sources such as government agencies or industry so that the project initially funded by CTF can flourish. To date a total of $4,450,678 in follow-on funding has been reported by prior DDI awardees. DDI awardees have also established 16 industry

collaborations; and published 20 scientific papers. Impact on NF Research Progress: The DDI program has jump-started 39 preclinical studies, priming the pipeline of potential NF treatments and increasing the chance of a drug advancing to the clinic.

NF Preclinical Consortium (NFPC)Program Initiated: Spring 2008Program Structure: Test drugs in parallel across models of NF1 and NF2 tumors to give drugs a broad evaluation in NF. Drugs must be trialed at a minimum of 2 sites. What Has Been Funded: Six sites have received a total of approximately $4m over 3.5 years. NF1 plexiforms (Dr. Tim Cripe, Cincinnati Children’s Hospital; NF1 mPNSTs (Dr. Karen Cichowski, Harvard/mGH); NF1 optic pathway glioma (Dr. David Gutmann, Washington University); NF1 leukemias (Dr. Kevin Shannon, UCSF - NFPC Chair); and NF2 tumors (Dr. marco Giovannini, House Ear Institute and Dr. Andrea mcClatchey, Harvard/mGH). NFPC is overseen by a Project

Accelerating NF Research Progress Through Strategic Planning: Evaluating Progress and Planning for the Future

In 2011, the Foundation is setting a strategic course for the next five years of NF research, learning from and building on what we accomplished since 2006. To this end, CTF convened a Strategic Planning meeting in January, and we are currently developing the recommendations from that meeting into our 2011 Strategic Plan. Here, we look back on the past five years of CTF investments toward ending NF.

In 2006, the Children’s Tumor Foundation had a 25-year legacy of funding discovery (basic science) research through the long running Young Investigator Awards (YIA) program. The YIA was (and continues to be) a highly successful program, in fact many former YIAs are today’s NF research and clinical care leaders. But the YIA program alone, while a necessary first step to finding potential treatments, was not going to get us to our goal of providing therapies and eventually a cure for NF. So in 2006, we set out to identify priorities that could accelerate the identification of effective NF treatments, and improve quality of life for those with NF. In order to do this CTF organized an NF Strategic Planning meeting of twenty-five participants including NF researchers and clinicians, biotech/pharma researchers, government funding agency staff and other foundations. The mandate was to identify areas of NF research that, if given attention and funding, could significantly accelerate NF research progress.

The resulting 2006 Strategic Plan recommended five areas of focus: support preclinical drug testing, establish and NF clinic network, identify new NF biomarkers, set up an NF Tissue Bank, and fund pilot scale NF Clinical Trials. NF research has made major advancements in the past five years and by implementing the above programs CTF has been a catalyst in this as summarized below.

In 2011 the NF community has:•Nineteen ongoing NF-specific clinical trials •An active preclinical ‘pipeline’ in which CTF has entered fifty drugs or combinations•The CTF NF Clinic Network and increased consensus on aspects of NF clinical care •A national NF BioBank and Registry•multiple industry collaborations and greatly enhanced visibility via philanthropic

platforms the CTF participates in e.g., BIO, FasterCures

In 2006 the NF community had:•Two to three NF specific clinical trials •limited preclinical drug testing •No centralized information on NF clinics•No national NF tissue bank or patient registry •No or very limited industry interest in NF

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research news

manager, mila mcCurrach. NFPC progress is monitored by an External Advisory Board with extensive expertise in commercial drug development. The EAB advises NFPC sites on drug selections and assists where possible in establishing industry collaborations.Outcomes: To date, NFPC has entered six drugs into preclinical trials with further drugs on deck. Ongoing and concluding drug trials include collaborations with companies such as Novartis, Genentech, Avila Therapeutics. Companies provide drug and guide the investigators in preclinical trial design and data interpretation. The first drug trial completed by NFPC, Novartis’ BEZ-235, will be submitted for publication in the spring.Impact on NF Research Progress: NFPC may emerge to be the most significant investment made by CTF to accelerate NF research progress to the clinic. It is a unique resource for NF preclinical trials and has provided CTF an opportunity to form close partnerships with industry. It is anticipated these will continue to grow and expand, since NFPC provides a straightforward way for companies to test their drugs thoroughly in NF models. In recognition of its value, CTF has committed a further $3.5m to expand NFPC over two further years, taking its support through to 2013.

NF Clinic NetworkProgram Initiated: Spring 2007Program Structure: CTF Clinical Care Advisory Board (CCAB) developed ‘Principles of Operation of an NF Clinic’ that outlines standards of care an NF clinic should offer. NF Clinics that meet these become NFCN Affiliate Clinics. In addition, various funding mechanisms have been made available to NFCN Affiliate Clinics each year to improve NF clinical care, knowledge of NF management options, and connect NF physicians and clinics across the US.What Has Been Funded: As of march 2011, NFCN has 44 NFCN Affiliate Clinics. more than $800,000 has been disbursed to date to NFCN Affiliate Clinics. Outcomes: NFCN provides a unique resource both for patients/families and clinicians to understand the specialties and types of services provided by the 44 individual NF Clinics currently participating in NFCN. One of the most notable outcomes of the NFCN is that at the end of 2010, Affiliate Clinics reported a total of 10,000 individual NF patients having been seen. Impact on NF Research Progress: Overall, NFCN has allowed CTF to gain a broad understanding of how NF clinical care is delivered in the US and to share this knowledge with NF patients and families seeking specialized care. The Foundation has received very positive feedback from both clinics and families about NFCN. As NFCN expands its activities e.g., in relation to the NF Registry and BioBank described below, its impact will increase even more dramatically.

Clinical Trial Awards & Clinical Research AwardsProgram Initiated: January 2008Program Structure: Initially, $125,000 Clinical Trial Awards (CTA) Awards were offered for pilot-stage clinical trials. In fall 2010, this was revised into Clinical Research Awards (CRA) of $100,000 to fund either pilot-stage clinical trials or adjunct studies that would develop approaches to improve the design and success of clinical trials. For both programs a two-stage process was used with applicants

submitting a letter of Intent then if approved, invited to submit a full application. What Has Been Funded: Two CTAs were funded in 2009: Phase Zero trial of lapatinib for treatment of vestibular schwannoma - Jaishri Blakeley, Johns Hopkins University; and Phase I trial of sorafenib for plexiform neurofibroma - Bruce Korf, University of Alabama. Four CRAs were then funded in 2010: Phase II Trial of Rapamycin in NF2 tumors - matthias Karajannis, New York University; Imaging metrics for NF1 optic pathway glioma trials - Rob Avery, Children’s National medical Center; Blood markers as early predictors of NF1 severity - Cynthia Hingtgen, Indiana University; Computerized ‘maze’ for NF1 learning disabilities trials - Nicole Ullrich, Children’s Hospital Boston.Outcomes and Impact on NF Research Progress: As this program is still fairly new, we would anticipate having a clearer picture of the outcomes in the next year or so. However, we anticipate this program will have a major impact in advancing NF clinical trials and priming the clinical pipeline with new drugs as well as new approaches to make trials as successful as possible.

NF BioBank & Patient RegistryProgram Initiated: Fall 2010Program Structure: Though many hospitals maintain in-house patient registries and tissue banks, there is no national NF patient registry or NF biological samples repository (of tumor, blood, etc.). This will be a vital tool for research, as well as for planning future clinical trials. What Has been Funded: CTF has selected six NFCN Affiliate Clinics to participate as pilot sites for the commencement of the BioBank & Registry: University of Alabama, Children’s Hospital los Angeles, Johns Hopkins University, mayo Clinic/minnesota, Children’s Hospital minnesota, and University of Utah. Each site has been awarded $20,000. Outcomes: This is a new initiative but we may expect something as follows. Registry: Success will initially be measured by the number of patients entered. moving forward success will be measured by mining/usage of data in the Registry. BioBank: As collections are established, success will be measured by the number of requests to use tissue; and recognition of the collection in ensuing publications. longer term, the BioBank should provide a platform for researchers, or even industry, to request and fund tissue collections.Impact on NF Research Progress: The NF BioBank & Patient Registry will help to i) identify persons that might be candidate participants in future clinical trials and ii) provide access to NF tumors, blood and other tissues to e.g., study genomics and identify new biomarkers which in turn will advance our understanding of NF, clinical trial design and drug targets.

The continued success of the Foundation’s research initiatives requires careful planning and wise stewardship. Through the 2011 Strategic Planning Meeting and our commitment to seeking input from the foremost experts in NF research and care throughout the world, we anticipate the next five years will produce the most profound results yet as we move toward treatments for the manifestations of NF, and eventually a cure.

NF News • Children’s Tumor Foundation | 5

CTF Funds Four New Clinical Research Awards

research news

The Foundation's recent initiatives to accelerate the identification of NF drug therapies have included a Clinical Trial Awards program to fund small scale clinical trials. Through that program, last year we were delighted to announce the funding of two trials: lapatinib for NF2 vestibular schwannoma, with $125,000 awarded to Dr. Jaishri Blakeley at Johns Hopkins University in collaboration with GlaxoSmithKline; and sorafenib for NF1 plexiform neurofibroma, with $125,000 awarded to Dr. Bruce Korf at the University of Alabama to expand on a National Cancer Institute trial headed by Dr. Brigitte Widemann and Dr. Aerang Kim of NCI.

In fall 2010, responding to inquiries from the research and clinical communities we expanded the scope of this program to Clinical Research Awards. These can still be used to fund small scale clinical trials, but can also be used for adjunct clinical studies to identify ‘biomarkers’. Biomarkers are clinical indicators that can be used to determine if NF is progressing or if a drug is working to slow progression. Biomarkers will ultimately be used to improve the design and implementation of clinical trials making them faster and more meaningful.

Four Clinical Research Awards have been funded: one clinical trial, and three adjunct biomarker studies. These are described below. Following an enthusiastic response to this program, CTF hopes to announce the next deadline for Clinical Research Award applications in spring 2011.

> Phase II Trial of Rapamycin – NF2 Tumors Matthias Karajannis, New York University Langone Medical CenterIndustry Collaborator: NovartisIn the past couple of years, clinical trials for candidate NF2 drugs have commenced, driven in par t by CTF’s commitment to advancing this area through hosting expert consensus advisory meetings, and also by funding some of the first NF2 clinical trials. This is the second NF2 clinical trial that CTF has funded; the first, a Phase

Zero (presurgery) trial of lapatinib, is near conclusion and has been a collaboration between Dr. Jaishri Blakelely (Johns Hopkins University) and Dr. matthias Karajannis (New York University langone medical Center). In this newly funded NF2 clinical trial, RAD001 (rapamycin) is assessed as a candidate drug therapy for NF2 by its effects on the growth and/or shrinkage of the characteristic NF2 tumors vestibular schwannoma, meningioma and ependymoma. RAD001 has been widely tested in patients and is known to be safe; indeed it was one of the first drugs to enter large scale clinical trials for NF1 plexiform

tumors. This trial asks whether there is any potential efficacy of RAD001 in NF2. If there are promising results, this trial will pave the way for future combination therapy drug trials, since animal studies have suggested that RAD001 might be additive if combined with other drugs such as Bevacizumab or laptinib, also being tested as candidate NF2 drug therapies.

Novartis is providing the drug and additional suppor t for this trial, leveraging CTF’s investment.

The following three studies, while independent of one another, are all being done as adjunct studies to the Congressionally Directed Medical Research Program’s Phase II Clinical Trials Consortium. By funding studies in conjunction with larger government or industry funded studies, the Foundation maximizes the support of our donors.

> New Metrics for Optic Pathway Glioma Trials Rob Avery, Children’s National Medical Center

As NF clinical trials move ahead, it is becoming apparent that there is a need to develop more sensitive approaches for determining as early as possible if a drug is effective. This will mean that the timeline of clinical trials can be shortened, and that a greater number of patients can benefit more rapidly from promising drugs. In this study, Dr. Avery is utilizing a new technology termed Spectral-Domain Optical Coherence Tomography that can be used to detect changes in the optic pathway that will predict as early as possible whether trials to assess drugs for NF1-related optic pathway glioma

are looking promising or not. By establishing a reliable quantitative biomarker, the results of this study will make a significant contribution to the advancement of drug treatment for NF1 optic pathway glioma. It should also improve ongoing ophthalmologic care for children with NF1 by acquiring much needed knowledge about the pathophysiology and natural history of NF1-related optic pathway gliomas. This new technology will be an essential biomarker component of future optic pathway glioma therapeutic clinical trials.

> Blood Predictors of NF1 severity Cynthia Hingtgen, Indiana UniversityVascular disease is a manifestation of NF1 that is frequently overlooked, but individuals with NF1, particularly younger patients, are at a significantly elevated risk of vascular disease. Researchers are learning progressively more about the genetics and molecular signaling events that underlie this manifestation. This study aims to take this learning a step further and develop diagnostics to determine how severe vascular disease is likely to be by identifying a blood-borne marker that is

By funding studies in conjunction with larger

government or industry funded studies, the

Foundation maximizes the support of our donors.

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national programs

Bob Skold Reflects on Finishing His 50th Marathon

Completing 50 marathons was a goal I set three years ago. I thought this kind of commitment and effort would demonstrate my strong desire to raise money for treatments and a cure for NF. I wanted “to be the change I wish to see in the world.” I have been raising money as a member of the NF Endurance team since 2000. (This was back when we were wearing green running singlets instead of the sporty, sleek, neon yellow ones we have now.) I needed to raise the bar higher to keep my donors attention and interest. I took a cue from Shakespeare, who wrote:

Then marvel not, thou great and complete man,That all the Greeks begin to worship Ajax;

Since things in motion sooner catch the eye Than what not stirs

I decided that I would set a goal of running 50 marathons and raising $50,000 to catch the eye of my donors. For every marathon, I paced myself, finished strong, and never forgot that it’s not the speed but the purpose of the journey. This really kept me motivated and helped me avoid a running injury. Every single marathon I picked up the pace at mile 20 or 22 , felt the warmth of God’s smile, experienced an almost overwhelming sense of freedom and joy, and an intense emotion of feeling alive. I thought I was the happiest person in the world! Yet there were some times during the run when the lives of my NF heroes came to mind. I thought of their struggles and pain living with NF, and I literally cried. If someone asked me my finish time, I would say “well, it could have been better, but I stopped a few times to shed some tears.” Having now achieved my goal I am both elated and relieved, but more importantly I am grateful for the gift of running and the gift of my health. I also find myself thinking, "What’s next?" I certainly want to keep running until a cure is found, and after that will want to raise money to make NF treatments affordable. The answer? my running never ends! Well, marathon 51 was last weekend at the Surf City marathon so only 49 to go for 100. Woo Hoo! I RUNFOR A REASON, visit www.504NF.com and you will see several of my reasons.

Races on this page are listed 12 weeks in advance to allow adequate time for training and fundraising.

05/07INDY mINI mARATHON AND 5K

Indianapolis, IN

SOLD OUT

Charity Slots Available

05/08KAlAmAZOO mARATHON, HAlF, 5K

Kalamazoo, mI

05/15ClEVElAND mARATHON, HAlF, 5K, 10K

Cleveland, OH

Charity Discount Available

05/15POCONO mARATHON, RElAY, 5K

Stroudsburg, PA

06/05SAN DIEGO RNR mARATHON, RElAY, HAlF

San Diego, CA

06/05ESCAPE FROm AlCATRAZ TRIATHlON

San Francisco, CA

SOLD OUT

Charity Slots Available

06/25SEATTlE RNR mARATHON AND HAlF

Seattle, WA

07/09 - 07/10SEATTlE TO PORTlAND BIKE RIDE

Seattle, WA to Portland, OR

07/13SAN FRANCISCO mARATHON, HAlF, 5K

San Francisco, CA

A note was attached to a donation recently sent to the Foundation. It was written by a woman who had not run a race with our team, but it speaks to the core of the NF Endurance experience.

"Hello - I just completed the Disney 1/2 Marathon. I was not very prepared for this race due to some pre-race injuries. Just as I was passing Spaceship Earth, your trainer Tracy suddenly appeared. I have no idea where she came from, but she asked if I was okay. I wasn't, and I was very depressed. Tracy saved me that morning. I would have finished, but not with a smile. Tracy brought my smile back. I will remember her forever. I will be back for the 2013 race if my foot is better, and I will keep your Foundation in mind. None of the other Foundation coaches would have done what Tracy did, and I'm very grateful." - Evelyn, Westminster, CO

Inspired? Visit http://nfendurance.org/events to sign up for a race near you. Whether it is a 5K or a bike race across America, you can achieve your fitness goals while giving hope for a cure to those living with NF.

NF News • Children’s Tumor Foundation | 7

national programs

NEW ITEMS IN THE NFE ZONEChildren's

T-shirtsConvertible Running

Gloves/Mittens

NFENDURANCE.org/Store

NOW OPEN

Purist Water Bottledonated by Specialized Water Bottles

Images from the Disney Marathon

8 |

national programsDriving ResearchContinued from page 1

joined the team as they pushed the #4 out onto the star ting grid, walking with the drivers and crew all while being applauded by the thousands of race fans along the route. Once the race star ted, the families had a chance to relax and enjoy the race from above pit road in the Pit Road Patio Suites area. later that evening many families enjoyed a little racing of their own at Daytona lagoon where go-kar ting and mini-golf made for a perfect end to the day. As Sunday dawned, the #4 CTF car was still going strong, heading toward a record 8th place finish for the CTF team.

Karyn Zazula, mom of NF Hero michael Zazula summed up the weekend best, "It is difficult to express in words the overall experience we had but if I were to sum it up I would say “inspiring”. When you are a parent of a child with NF it is easy at times to feel very alone. This weekend provided an atmosphere of common concerns, stories, experiences, and most impor tantly hope. It was a chance to make new friends, set new goals, and make a difference! Our son michael was able to meet his fellow NF Heros and just enjoy being a kid with them! As a parent, this is something you cannot place a value on and I will remain forever grateful for allowing michael that experience... I can say without a doubt this [weekend] surpassed any expectation we had. my husband and I both realized it was because this was a race with true purpose and

personal meaning. In racing you always want the win, in our minds CTF and TRG Racing won the race before they even dropped the green flag!"

Driver Daniel Graeff said, “On a number of levels, we've completely exceeded our goals. We'd already raised more than previously before we even arrived for the race week, and to couple that with finishing so strongly is just amazing. Kenny Wallace added tremendous value to awareness for the program, and when combined with the prestige of TRG, Ron, Kenny, Rich, and Ryan all drove flawlessly. This is such a team effor t, we're all ecstatic.”

The Rolex 24 weekend is the largest event on the Racing4Research calendar and when the results are all finally added up, we will have surpassed every goal we set for this year including, impressively, how we finished on the track. Not only did the #4 Children's Tumor Foundation GT3 finish the grueling 24 Hours At Daytona for the third consecutive year, we completed 658 laps and exceeded our goal of a top-10 finish by coming in 8th! While we're still counting the final fundraising numbers, we're confident we will exceed our goal of $450,000 raised for NF research bringing the five year total for Racing4Research to more than $1.2m raised to fuel the cure for NF.

Jack Burke, NF Hero, Busy GuyContinued from page 1

area families affected by NF. more than 100 people gathered for what was an eye-opening experience, both in terms of what was learned and in terms of how vast the community was.

“We were shocked at the response rate,” said Beth. “People were craving information and collective action. That day we star ted building toward a more cohesive group.”

The symposium also motivated the Burkes to push forward with their fundraising activities. They signed-up Jack to be a Racing4Research NF Hero as a way to introduce him to NF and some of the others who live with the disorder, and to also give them a chance to raise money for research. Over the course of 2010 they hosted events and shared Jack’s story with friends and family.

“The response was amazing,” Jake said. “We learned that a lot of people are just looking to be asked to help.”

In total the Burkes raised more than $15,000 toward Jack’s NF Hero campaign and then they joined the Foundation in Daytona at the Rolex 24 where Jack had a chance to meet many other kids affected by NF.

“It was amazing on several levels,” said Jake of the R4R experience.

“It was a great way to introduce Jack to a life of NF in a very positive and hopeful way. The empowerment that he got, when he stood in front of a room of 200 people and spoke into a microphone – it was a huge step.”

The experience also gave Jack the opportunity to practice his craft. Prior to the race each NF Hero gets to sign the #4 Children’s Tumor Foundation car and sit in the drivers seat for a photo op. The event draws a large media gathering with repor ters and t.v. news crews wanting to get in on the action. Jack felt the experience was just like being a movie star, “there was nothing around me but cameras,” he said.

The Foundation is hopeful that he won’t be too busy to join us at the track next year.

Beth, Jake and Jack with the Racing4Research drivers

NF News • Children’s Tumor Foundation | 9

national programs

www.racing4research.org

Racing4Research at Daytona 2011

Marty & Iris Walshin Foundation Turning Tragedy into Triumph

Special Thanks To OurRacing4Research

SponsorsYour support made our amaziing

2011 Daytona 24 weekend possible!

NF Hero Katelyn Watkins with veteran R4R driver Daniel Graeff

NF Heroes with drivers Ron Yarab, Daniel Graeff, Rich Zahn, Ryan Eversley and Kenny Wallace NF Hero Jesse Markland and brother Blake

NF Hero Kevin Martin with dad Tim.

NF Heroes help the crew push the #4 to the starting grid.

2011 Racing4Research Team

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national programs

04/30NF WAlK GREENSBORO

North Carolina

05/07NF WAlK NASHVIllE

Tennessee

05/14NF WAlK lOS ANGElES

California

05/21NF WAlK mONROE

michigan

06/25NF WAlK BOSTON FREEDOm TRAIl

massachusetts

07/31NF WAlK mINNEAPOlIS

minnesota

08/07NF WAlK POCONOS

Pennsylvania

09/17NF WAlK BRUNSWICK

maine

09/17NF WAlK mIlWAUKEE

Wisconsin

You can be a par t of raising $1 million for NF research this year. Join our national NF Walk program and par ticipate in an existing walk or star t a Walk in your community. This year Walk par ticipants will receive pedometers so we can track every step taken to cure NF. We are very excited to have you as a par t of our community and look forward to your suppor t in 2011.

New for 2011 - We listened! In 2011 we introduced the new Friends Asking Friends fundraising software that replaces Active. This is designed to suppor t your NF Walk and other “team” fundraising events. Par ticipants can utilize the intuitive front end tools to set up, manage and monitor a personal fundraising page, as well as to e-mail personalized solicitations to friends and family inviting them back to make a donation or become a par ticipant. This will add to your event’s success by empowering your par ticipants to become fundraisers and recruiters on behalf of the Children’s Tumor Foundation, facilitating exponential growth in donations and par ticipation levels.

Interested in helping us meet our goal for 2011? Star t an NF Walk Team with your family, friends, classmates, or colleagues.

Forming a Walk team makes it even easier for your friends and family to join you in your fight to cure NF. Recruiting teammates expands the network of individuals from whom your team can gather donations and encourages more people to get involved. more impor tantly, walking with friends is a fun way to spread awareness of NF and the work of the Children’s Tumor Foundation.

more reasons to form a team: Teaming up for the Walk also provides workers and students with an oppor tunity to par ticipate in community service and to spend time together outside of their working environment. Walking as a team requires no corporate donation, yet demonstrates an organization’s commitment to local public service.

Groups of friends and families can also benefit from forming a team. Walking together is a fun way for friends, communities, and relatives to get exercise and enjoy the outdoors. Your team will be proud of not only the donations you will raise by combining your effor ts, but also for having engaged in a day of healthy activity with loved ones.

Star ting a Walk team will better enable you to help fund research for a cure for NF and spread awareness of the disorder. Expand your impact and star t signing-up teammates today.

For 2011 NF Walks inquiry please email nfwalk@ctf.org or call 212-344-6633.

www.ctf.org/nfwalk

NFWALK

NF News • Children’s Tumor Foundation | 11

national programs

04/30NF WAlK GREENSBORO

North Carolina

05/07NF WAlK NASHVIllE

Tennessee

05/14NF WAlK lOS ANGElES

California

05/21NF WAlK mONROE

michigan

06/25NF WAlK BOSTON FREEDOm TRAIl

massachusetts

07/31NF WAlK mINNEAPOlIS

minnesota

08/07NF WAlK POCONOS

Pennsylvania

09/17NF WAlK BRUNSWICK

maine

09/17NF WAlK mIlWAUKEE

Wisconsin

Join us in the Twin Cities for an insightful and fun weekend at our third annual NF Forum: Patient and Family medical Symposium. The Forum brings together exper ts in the field of NF research and clinical care and gives attendees the oppor tunity to learn a about the disorder and receive practical advice on overcoming the challenges of living with NF. You will have the oppor tunity to connect with other parents, children and adults affected by NF and share experiences with one another. This year’s Forum includes:

NEW FOR 2011: Children’s Tumor Foundation in conjunction with mayo Clinic is pleased to offer a new dimension to the NF Forum. Par tnering with mayo Clinic, we will offer a "Health Fair" for individuals with NF2 or schwannomatosis on July 29, 2011 as par t of the 3rd Annual NF Forum. The Health Fair will provide the oppor tunity individuals with NF2 or schwannomatosis to be informally evaluated by an exper t panel consisting of medical professionals that have special exper tise with NF2/schwannomatosis. Evaluation by exper ts is at no charge to patients. limited spots are available. If you are interested in par ticipating, please register for the NF Forum and complete the shor t "Health Fair" Application form. You will be notified about whether you've been selected in advance of the conference.

In addition to the Health Fair on July 29, 2011, NF Forum attendees will have the oppor tunity to travel to Rochester and go on a historic tours, ar t tours, or general tours of the mayo Clinic Campus and surrounding area. Transpor tation will be provided, but limited spots are available. If you are interested, be sure to register early!

KID’S FORUM: The NF Forum is designed to inform parents and patients about NF, but it’s also a fun and exciting weekend for kids who get to make new friends and great memories. The Kid’s Forum is for ages three and up with planned activities and age appropriate workshops. make the NF Forum weekend a family vacation!

NF MOMS ROCK: This group will bring moms together to share stories and discuss challenges that are unique to families affected by NF. The group will give moms the chance to learn from and suppor t one another.

NF DADS ROCK: In this group, NF dads will come together and share from their perspective. As with the moms, dads have special experiences that come from being par t of a family affected by NF. This group will help create bonds and friendships that will last into the future and provide suppor t and comfor t.

NF WALK: What better way to close out the NF Forum weekend than an NF Walk and picnic to help raise awareness? The Walk will be held at minnehaha Park, which overlooks the historic mississippi River and is one of minneapolis’ oldest and most popular parks. The 193-acre park features a waterfall, limestone bluffs and river overlooks.

20-SOMETHINGS: This group is for those affected by NF, whether it be directly, a sibling, a friend, a cousin; 20-Somethings who want to get together to socialize and network. In this world of Facebook, Twitter and other social networking 20-Somethings have the power to successfully advocate, promote public awareness and fundraise while doing the things they love. The group will focus on discussing ideas that have worked in all these areas and generate new ideas that will really impact the NF community. 20-Somethings are the future of the Children’s Tumor Foundation and why not focus not only on the hard work that goes into all these things but the fun that can be had too. And don’t forget – work by day and there will be some par tying at night!

The NF Forum is the perfect mix of fun, friends and information!

Registration Opens March 21! For more information visit

www.ctf.org/nfforum

“It was the most incredible event - educational, supportive, social. Perfect! My 13-year-old had the

best time in his life.” - Suzanne A.

“Thank you so much for putting all of this together! Our lives have

been changed because of our son’s NF and the information and contacts we’ve received through

the Forum have had an enormous, positive impact! Thank you!” -

Georgette H.

July 27-31, 2011Minneapolis, MN

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regional news

TexasThe Texas Affiliate hosted a Racing4Research Race Day Party in Denison, TX in honor of NF Hero Kaleb Grigg. Kaleb was able to attend the race in Daytona on Jan. 29th with his dad Thomas. Pictured: Thomas and Kaleb Grigg.

California The California Chapter hosted their 3rd Annual Racing4Research Race Day party on January 29th at BJ’s Restaurant and Brewhouse in honor of NF Heroes Brenda mcCool, Ray Thomas, and Rob Schafer. Families came from all over los Angeles to support the CTF #4 car at Daytona. BJ’s donated the food and drinks for all the families and a raffle was held for a wonderful collection of prizes. Each NF Hero received a gift bag and special recognition at the Race Day Party. Pictured: Brenda McCool, Ana Paula, Mark-David McCool, and Antoinette Delgado.

ArizonaThe Arizona affiliate hosted their 3rd Annual Racing4Research Race day party on January 29th at Fox and Hound Family Restaurant in honor of NF Heroes marisol Cordova and Annysa Ginsberg. Pictured: Annysa Ginsberg and Marisol Cordova.

Nevada The Nevada Affiliate hosted their 3rd Annual Racing4Research Race Day party on January 29th at BJ’s Restaurant and Brewhouse in honor of NF Heroes Kirsten and Taylor Halbert. Pictured: Kirsten and Taylor Halbert with friends.

Colorado The Colorado Chapter hosted their 6th Annual Gingerbread House Decorating Party on December 5th at Colorado Academy.

Denver, CO

Torrance, CA

Tucson, AZ

Las Vegas, NV

NF News • Children’s Tumor Foundation | 13

regional newsNew England BenefitThe Benefit Committee is already hard at work on the 2011 New England Benefit. This year’s Benefit will be held on October 15th at the Hyatt Regency Cambridge. The event will feature live music, cocktails, dinner and live and silent auction. Contact John Heropoulos at jheropoulos@ctf.org for more information.

New Hampshire The New Hampshire Chapter will be hosting their second fundraiser. Their first fundraiser, a luau for NF research, was a tremendous success. This year the Chapter will be sponsoring a Country Hoedown on April 16th featuring music, entertainment, appetizers and silent auction.

MassachussettsThis year, New England was represented by two beautiful children as NF heroes for the Racing4Research program. Celia laBarbera and Dylan Thompson were accompanied by their parents and loved ones and participated in the weekend activities. They are two of the many children whose lives are examples of love and courage.

Planning meetings are scheduled to organize new CTF Chapters in Vermont and Rhode Island. Interested volunteers are getting together to lay the foundations for dynamic chapters. Contact John Heropoulos at jheropoulos@ctf.org to get involved.

www.racing4research.orgDaytona 24 Racing4Research driver Ryan Eversley co-drives the #75 C360R Honda Civic SI

The Children’s Tumor Foundation will be featured - for the entire season! - on the Grand-Am Racing Continental Series #75 C360R Honda Civic SI. Limited complimentary tickets are available on a first come, first served basis. Children 12 and under are admitted free. Please contact Jill at jbeck@ctf.org to reserve your space!.

JOIN US! Enjoy a day at the track and a private meet n’ greet with Ryan Eversley and Compass360 Racing

Racing4Research is coming to your town!

March 5 Homestead-Miami Speedway, FLApril 8 Barber Motorsports Park, ALMay 13 Virginia International Raceway, VAMay 27 Lime Rock Park, VTJune 3 Watkins Glen International, NYJune 23 Road American, WIJuly 8 Mazda Raceway Laguna Seca, CAJuly 22 New Jersey Motorsports Park, NJSept 17 Mid-Ohio Sports Car Course, OH

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national programs

2011 NF Summer Camp Celebrating Its 15th AnniversaryCome join us for a week of fun, friends and shared experiences at the annual NF Summer Camp at Camp Kostopoulos, just outside Salt lake City. Camp K, a state-of-the-art facility catering to those with special needs, is nestled in scenic Emigration Canyon. Camp K provides a wide array of recreational facilities on-site, and can accommodate all ages and abilities. Do you like to be challenged? Try the high ropes course, or wall climbing. If you like horses and are yearning to learn to ride, a newly-built indoor riding ring with a full stable of horses awaits you. There’s swimming, fishing, canoeing, and much more, including day trips outside of camp, to places such as the Olympic Park in Park City. We promise you a memorable experience!

NF Camp FAQ’s

WHO: Kids ages 12-21

WHEN: Camp will be held in two one-week sessions• Saturday, July 16 – 22• Saturday, July 23 – 29

COST: Tuition is $650 plus transportation to Salt lake City (scholarships are available)

HOW TO APPLY: Applications can be downloaded at www.ctf.org/camp

Are you interested in being a junior counselor or would like to volunteer for a week? Please contact Patrice Pancza at ppancza@ctf.org, or call 1-212-344-6633 ext. 235.

Apply early and reserve your spot for what promises to be the best camp ever!

www.ctf.org/camp

NF News • Children’s Tumor Foundation | 15

national programs NF News is the official publication of the Children’s Tumor Foundation and is published quarterly. All issues are available on our website at www.ctf.org. Please direct any questions or feedback to the editor (listed below).

The mission of the Children’s Tumor Foundation, Inc. is to improve the well-being of patients and families affected by NF1, NF2, and schwannomatosis. The Foundation sponsors scientific research aimed at finding the causes and cures for the neurofibromatoses, promotes the development of clinical activities, works to create public awareness and provides patient support services.

The Children’s Tumor Foundation is a founding member of the International Neurofibromatosis Association.

EditorGarrett Gleeson, ggleeson@ctf.org

CreativeJill P. Beck, jbeck@ctf.org

Board of Directors

Stuart match Suna, ChairmanBruce R. Korf, m.D., Ph.D., Chairman, Medical Affairs CommitteeAllan E. Rubenstein, m.D., Director of Medical Affairs Emeritus

Daniel Altman, Vice Chairmanlaura Ganio BonaWilliam BrooksColin BryarJohn CatsimatidisSuzanne Earle, Chairwoman Emeritusmark EbelDaniel GilbertJames. F. Gusella, Ph.D.Richard Horvitzlinda martin, SecretaryJohn mcCarthy, TreasurerSteve mcKenzieDenise OgleJason PontinRobert SchafferTara SkirzenskiRachel TivenDavid Viskochil, m.D., Ph.D.Nate Walker, Vice ChairmanPeggy Wallace, Ph.D.

95 Pine Street, 16th FloorNew York, NY 10005800.323.7938 | 212.344.6633212.747.0004 Fwww.ctf.org

The Children’s Tumor Foundation is a 501(c)(3) non-profit organization and all donations are tax deductible.

Fordham Sailing Team Fundraiser Thank you to the Fordham Sailing team for their efforts that raised $3,210 for NF Research. The team held a fundraiser during second quarter and throughout halftime of a football game between Fordham and the University of Rhode Island. members of the Sailing Team accepted gifts at tables set up inside the main entrance of Coffey Field.

Start Planning your Tea for NF Now! Join the volunteers who make the Tea for NF a success each year by hosting your own Virtual or Actual Tea. may 1, 2011 is National Tea for NF Day. Hosting a Tea for NF is a simple way to positively impact the lives of those living with NF. Raise funds for a cure while enjoying a cup of tea with friends and family. All proceeds will go directly to research and patient support to better the lives of individuals living with NF. Whether you are planning an Actual of Virtual Tea The Children’s Tumor Foundation will supply you with beautiful invitation packets and donation cards as well as a NEW AND ImPROVED ONlINE FUNDRAISING TOOl that allows you to share your story and collection donations online for your event. Tea for NF Fundraising IdeaConsider hosting a multigenerational Tea for NF for grandmothers, mothers, aunts and daughters. You can also promote attendance at to your party by printing flyers and delivering them to local churches, libraries, local moms groups, public bulletin boards as well and promoting the event on Facebook. Adding crafts to beautify set tables can make your event special and/or you may consider adding excitement by introducing a contest with a special prize. For instance a prize for the loveliest hat, the largest hat, or the most creatively decorated hat.

For more information about planning your tea for NF, please contact Traceann Adams at 212-344-6633 x236 or email tadams@ctf.org.

TEANFfor

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events

95 Pine Street, 16th FloorNew York, NY 10005www.ctf.org

NON PROFITUS POSTAGE

PAIDPERmIT NO. 30NEWARK, NJ

CTF CAlENDAR:

04/02INDIANA: Guns & Hose Charity

Boxing match

04/09mARYlAND: Kappa Sigma's Kickball

for Kids

05/21FlORIDA: miami NF Symposium

06/11WYOmING: NF Conference

07/29mINNESOTA: 3rd Annual NF Forum