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NF NEWS WINTER 2012

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

The Stars Aligned for a Successful Children's Tumor Foundation Benefit Dinner On November 2, 2011, the Children’s Tumor Foundation raised almost $1.5M at its annual Benefit Dinner at the elegant Cipriani 55 Wall Street in downtown New York City. This is the Foundation’s premier event, and not only serves as the most important fundraiser of the year, but is also a celebration of the progress being made in NF research, and an occasion to honor some very special individuals within the NF community. The annual Benefit Dinner has become a truly national event, with over 700 people in attendance, including approximately 200 team members of the Quicken Loans Family of Companies, which was awarded the Children’s

IN THIS ISSUE From The President................................ 2

Humanitarian Award as corporate honoree, and was accepted by Quicken Loans CEO Bill Emerson. Also receiving this award as medical honoree was renowned NF physician Dr. Roger Packer of the Children’s National Medical Center and the Gilbert Neurofibromatosis Institute. While the guests were treated to cocktails, hors d’oeuvres and a fine three-course dinner served in grand Cipriani-style, with musical accompaniment by the David Grausman trio, the evening’s emcee, Zach Braff of Scrubs and Garden State fame manned the podium with great energy and humor that elicited many continued on page 15

NF Forum 2012: National Patient

and Family Symposium, June 8-10 neurofibromatosis and their families to connect, receive and provide support, and learn from each other while attending seminars on relevant topics pertaining to NF1, NF2, and schwannomatosis.

Foundation News................................... 3 Research News The Neurofibromatosis Year.................... 4 National Programs.................................. 7 Racing4Research................................... 7 NF Camp............................................... 12 Regional News....................................... 13 Stories of NF.......................................... 14

Get t he Latest o n N F Email info@ctf.org with your name and contact info to make sure you’re up-todate on NF news and Foundation events.

Dan and Nick Gilbert during Nick's acceptance speech

The Children’s Tumor Foundation is proud to announce the 4th Annual NF Forum National Patient and Family Symposium, being held in New Orleans, Louisiana, June 8-10, 2012. We anticipate that over 250 people will travel from throughout the world to historic New Orleans to participate in this important event. The purpose of the NF Forum is to encourage those living with

For the first time, the upcoming NF Forum will be held adjacent to the NF Conference. The NF Conference brings the world's foremost experts in the field of neurofibromatosis together to share their research in an atmosphere of professional collaboration. This will provide an unprecedented opportunity for the Forum to hold familytargeted sessions benefiting from the presence of many international physicians, researchers, and clinicians, sharing the latest in medical advancements. Some of the topics addressed at the 2012 NF Forum will include: managing tumors, current clinical trial updates, socialcontinued on page 2 NF News • Children’s Tumor Foundation | 1


FROM THE PRESIDENT Mark Your Calendar for the Luncheon Not to Be Missed March 13, 2012 12-2:30 p.m. One Bryant Park, 51st Floor, New York, NY Please join us for the 2nd annual Luncheon Not to Be Missed. Take advantage of this rare opportunity to lunch in the heart of New York City, attend a seminar on child-rearing, and support the work of the Children’s Tumor Foundation. For more information please contact Athina Moustakis at (212) 344 - 6633, ext. 228 or AMoustakis@ctf.org.

CTF on Broadway!

For several weeks this fall, the Children's Tumor Foundation had the exciting opportunity to post a digital billboard regarding NF on the screens outside the Nasdaq building in Times Square.

A note from Children’s Tumor Foundation President George T. Orfanakos As I reflect upon this past year, I am grateful for the progress we have made and the commitment of so many who are dedicating their time, talent, and means to advancing neurofibromatosis research. We enter 2012 with much reason to hope. The progress we have made is only overshadowed by our optimism for the future. Across the country, the NF community is working side by side, supporting each other and trying to leverage every resource and fully develop every opportunity. In 2011, the Foundation and its supporters demonstrated that we can accomplish great things through collaboration. A $35 million scientific strategic plan for the next five years was approved by our Medical Affairs Committee. A new Senior Vice President of Research and Drug Development, Dr. Annette Bakker, was hired to further accelerate NF research progress by expanding our relationships with biotechnology and pharmaceutical companies. Thanks to the Children's Tumor Foundation's Annual Benefit Dinner, our National Programs (NF Endurance, Racing4Research, and NF Walk), Major Gifts and Grants, and donations from supporters around the world, we had our most successful fundraising year in the history of the Foundation and are able to fund more critical research than ever before. This year we have also effectively solicited pro-bono public awareness opportunities that generated nationwide exposure of NF including a piece on NBC's TODAY show, a billboard for several weeks in Times Square, and even the lighting of the Prudential Tower in Boston.

NF Forum 2012 Continued from page 1

emotional aspects of these disorders, neurocognitive functioning concerns at school and work, insurance issues, and family planning options. In addition to the informational sessions, there will be a one-day Health Fair on Friday, June 8. The Health Fair will provide an opportunity for personal consultation with an international panel of medical providers with expertise in NF and schwannomatosis. Applications for the Health Fair will be available in early 2012. The NF Forum also offers many opportunities for individuals and families to connect. Be on the lookout for the Kids' Camp that will provide activities for the children, the ‘NF Moms Rock’ and ‘NF Dads Rock’ social groups, the CTF Connect group for those in their 20’s and 30’s, and dedicated activities for older teens. Mark your calendars and plan to join your NF/schwannomatosis family in a weekend of learning, sharing, and celebrating. For more information, please contact Traceann Adams at 212-344-6633, ext. 236, or tadams@ctf.org. 2 |

The impact of the Foundation’s medical research over the past year has been tremendous. Our NF Clinic Network, now 44 clinics strong, saw over 10,000 patients in 2011. Most of these clinics are enrolling patients in one of the 25 ongoing clinical trials now focused on NF, a wonderful indicator that research and clinical care are becoming truly united. In 2012 we look forward to enhancing this clinic-research relationship further through our NF Patient Registry and BioBank as well as new initiatives focused on genomics and biomarkers, all targeted to accelerate the identification of effective NF treatments. We expanded our NF Preclinical Consortium for another two years, demonstrating the Foundation’s commitment to preclinical drug testing. We provided funding for Young Investigator Awards, Drug Discovery Initiative Awards, Clinical Research Awards and Schwannomatosis Awards. In addition, we continued to promote research collaboration by hosting four Research Workshops and our largest ever NF Conference with over 300 attendees. To fulfill our common goal of effective treatments for NF, it is imperative that we continue working together in the spirit of cooperation and urgency that has characterized the Foundation's supporters over the years. We have the ability to increase the number of NF research studies, raise the level of public awareness and patient support, and expand our fundraising initiatives in 2012. Our achievements are directly attributable to your energy and resolve. We have arrived at our present state as a community, and we will conquer this mountain of a disorder hand-in-hand. We will climb the mountain, plant a flag in the ground, and tell the world that we ended NF. And when we do, that moment will belong to all of us. We will plant that flag together.


foundation news Children’s Tumor Foundation Funds Improved Tumor Measurement System for the NF Community Measurement of tumor volume is a key component in estimating tumor burden in patients with NF1, NF2, and schwannomatosis. Linear measurements are often used as a surrogate for tumor volume. However, for irregularly shaped tumors that grow in non-uniform ways, linear measurements are often inaccurate and unreliable, varying considerably across scans and between reviewers. The use of semi-automated volumetric techniques improves tumor measurement and the longitudinal tracking of tumor growth, allowing more reliable assessment of rate of change in lesion size, which is important in treatment decisions. Unfortunately, many facilities are not equipped with the necessary infrastructure or experienced staff to make these measurements in a reliable and time-efficient manner. This can make it difficult to determine the progression of individual lesions and may result in the delay of critical clinical care decisions.

Dr. Gordon Harris of Massachusetts General Hospital

The Children’s Tumor Foundation is pleased to announce continued funding of the NF Tumor Metrics Service (www.nftumormetrics.org) spearheaded by Dr. Gordon Harris and his colleagues at Massachusetts General Hospital (MGH). From 2003-2006, CTF provided pilot funding to help develop the technical infrastructure to create a centralized service to perform vestibular schwannomas and plexiform neurofibromas volumetric analyses. Due to the success of the pilot study, CTF will be offering the Neurofibromatosis Clinic Network (NFCN) sites the opportunity to send MR images to MGH for volumetric analysis at no cost. This service will be rolled out, on a limited basis, to all current NFCN sites. Additional NF providers will be considered on a case by case basis.

The NF Tumor Metrics Service provides reliable analyses of tumors on MR images to neurofibromatosis clinics nation- and worldwide. Web-based systems ensure easy access to imaging results—anytime, anywhere—with very reasonable turnaround time. The centralized service makes it practical for patients to have their vestibular schwannomas and plexiform neurofibromas tracked volumetrically and longitudinally, even if they transfer to a new location for care.

LOOKING FORWARD 02/05 - Clarkston, MI 2012 Kahtoola Michigan Mountain Run 03/13 - New York City, NY Luncheon Not To Be Missed 03/16 - Roseville, MI Striking Out NF Bowling Fundraiser 03/24 - Parsippany, NJ New Jersey Casino Night 04/29 - Minneapolis, MN Waterpark Fundraiser 05/17 - New York, NY NYC Poker Night

Jennifer Gilbert speaking at the Children's Tumor Foundation's Annual Benefit Dinner.

The NF Tumor Metrics Service offers web-based order entry and online multi-media results reporting for imaging analysis. Tumor volumes are tracked and results are stored in the NF database on a secure website accessible only by authorized clients. Through a streamlined data management process, imaging studies can be electronically transferred from CD via a secure Internet connection from any clinical site. Imaging analysis is performed by trained image analysts, and measurement results are reviewed by clinically-based Harvard faculty radiologists. Physicians can access on the website annotated images, graphs, and numerical measurement data to longitudinally track tumor burden. The ultimate goal of the NF Tumor Metrics Service is improved care for NF patients by facilitating clinical treatment decisions and clinical trials through volumetric assessment of longitudinal imaging studies. Through the continuing collaboration with the Children’s Tumor Foundation, this service is now available to the NF community in an efficient, convenient, and cost-effective manner.

L-R: Taylor Bagley, Zach Braff, and Nick Gilbert at the Foundation’s Annual Benefit Dinner NF News • Children’s Tumor Foundation | 3


research news

CHIEF SCIENTIFIC OFFICER DR. KIM HUNTER-SCHAEDLE

The Neurofibromatosis Year: 2011 in Review, and What’s Ahead for 2012 Once again, it has been a tremendously exciting year in neurofibromatosis research. At the Children’s Tumor Foundation we have been reviewing our past research progress, implementing new programs, and planning ahead for a significant expansion of our research and medical initiatives in the coming months and years. We are excited to be expanding our research staff. In December, we were joined by Senior Vice President of Research and Drug Development Dr. Annette Bakker who brings with her a broad background of research experience in the academic and commercial sector. We welcome her into a new role created to further engage industry in our Foundation’s mission by expanding our collaboration with biotechnology and pharmaceutical companies. Throughout all of this growth, our goal will remain constant and focused – to identify effective drug therapies for neurofibromatosis, and, in the meantime, to improve life for those living with neurofibromatosis by cultivating clinical management. Below are some highlights from 2011, and a preview of some of our plans for the year ahead. January - Forward Planning: The year kicked-off with a Research Strategic Planning Workshop held in New York City, where we reviewed the progress made within our five-year 2006-2011 Research Strategic Plan, and then set the vision and priorities that will shape the Foundation’s research and medical programs for the next five years, from 2012-2016. This Workshop was led by our Chair of Medical Affairs, Dr. Bruce Korf (University of Alabama), and included selected advisors from biotech and pharma, NF research and clinical care, other medical foundations, and government entities, including the Department of Defense, the Food and Drug Administration, and the National Institutes of Health. The majority of goals from the 2006 Strategic Plan have been successfully addressed. These have included funding preclinical drug testing (Drug Discovery Initiative and NF Preclinical Consortium), pilot clinical trials (Clinical Research Awards), and creating an NF Clinic Network. The 2011 advisory group agreed that all of these projects should continue in the coming years and that the scale of these programs should be expanded. In addition, the group recommended new priority areas that the Foundation should address including large scale genomics and biomarker initiatives. In the months following this workshop, the Foundation has developed a $35 million research plan for 2012-2016, and fundraising for this 4 |

expansion has already begun. A detailed version of this plan will be made publicly available in early 2012. April – A Focus on Bone Disorders: The Children’s Tumor Foundation hosted a Bone Workshop in New York City in April, which focused on understanding the bone abnormalities estimated to affect between 30-50% of people with NF1, and how to accelerate the development of clinical therapies. This workshop Dr. Florent Elefteriou was the second we have hosted (the first was in 2008) and was led by bone scientist Dr. Florent Elefteriou (Vanderbilt University) and bone clinician and clinical trialist Dr. David Stevenson (University of Utah). The workshop was attended by international bone researchers and clinicians from as far afield as Sydney, Australia. After the 2008 Workshop that the Foundation hosted, the group published "state of the field" information, and formed a working international collective or "consortium." They "meet" regularly by email and teleconference, but the April meeting allowed them to hammer out ideas in person. From this meeting will come not one but two "state of the field" publications (one focused on clinical care and one focused on discovery and preclinical research), and, also, informed planning for forthcoming bone dysplasia clinical trials and research studies. May – New Drug Testing Projects Funded: In May, we announced the funding of five extremely exciting new Drug Discovery Initiative Awards in very diverse areas of NF drug treatment. One of the most intriguing was focused on an emerging area of importance in NF1, which is how the structure Dr. David Largaespada of blood vessels is affected in those with NF1. There is emerging evidence that most people with NF1 have some degree of vascular dysfunction even if it is not clinically apparent. Dr. Jan Friedman (University of British Columbia) is assessing antiinflammatory drugs on blood vessel cells from NF1 patients to see whether these drugs improve cell health and function. Also of note, in May we were delighted to announce that one of the new approved DDI Awards was funded by the Texas Neurofibromatosis Foundation. This study, funded to Dr. David Largaespada (University of Minensota), is assessing a series of new drugs targeted at inhibiting tumor growth in a mouse model of malignant peripheral nerve sheath tumors. This was the second project funded by TNFF through the Children’s Tumor Foundation.


Also in May, the Foundation announced the availability of $100,000 Clinical Research Awards to fund pilot clinical trials or trial-related research (the recipients of these Awards will be announced early in 2012). June – The Busiest Month!: June was a very busy month! We hosted our largest ever Neurofibromatosis Conference in Jackson Hole, Wyoming which was attended by a record 300+ clinicians and researchers. The 2011 NF Conference, chaired by Dr. Nancy Ratner (Cincinnati Children’s Dr. Brigitte Widemann Hospital Medical Center) and Dr. Michel Kalamarides (Hôpital Beaujon, Paris), was a huge success, reporting many exciting new findings especially in the arena of new candidate drugs and clinical trials. (The Conference Report was published in November 2011 in the scientific journal Acta Neuropatholgica). Dr. Brigitte Widemann (National Cancer Institute) described two new clinical trials for NF1 tumors. The MEK inhibitor AZD6244 will be assessed as a treatment for plexiform neurofibromas, and a combination of mTOR inhibitor RAD001 + VEGF inhibitor bevacizumab (Avastin) will be assessed as a treatment for MPNSTs. Dr. Kent Robertson (Indiana University) reported on a trial of Gleevec (Imatinib) in NF1 patients with clinically significant plexiform neurofibromas, age 3-65. Individuals received the drug for 6 months, and if they benefitted they were given the opportunity to stay on the drug. Sixty percent of patients showed a response in one or more of their plexiforms, and 40% of those patients showed an improvement in their symptoms, such as issues with bladder control and airway function. Dr. Dusica BabovicVuskanovic (Mayo Clinic) reported on the concluding Phase II trial assessing the response of NF1 plexiform neurofibromas to Cediranib (AZD2171), a VEGF-targeted agent. Twenty-six patients, 18 years and older, participated in the trial and received the drug for periods of 18-41 months. Four patients showed continuous and sustained tumor shrinkage. In addition, the trial found that pain levels decreased over the period of drug treatment. Immediately prior to the NF Conference, the Foundation hosted a Learning Disabilities Network (LeaDNet) Workshop in Jackson Hole, WY, chaired by Dr. Maria Acosta (Children’s National Medical Center) and Dr. Alcino Silva (University of California Los Angeles). LeaDNet is a collaborative established Dr. Maria Acosta by the Foundation in 2006 to advance research in NF1-related learning disabilities. This was a particularly interesting workshop as we included researchers and clinicians from the arenas of autism, Fragile X Syndrome, and ADHD, all of which share some commonalities with NF1 learning disabilities and may help accelerate research progress. As an outcome of this meeting, LeaDNet participants are writing a "state of the field" publication and have formed working groups to share data and plan research collaborations

around four major areas of interest. The Foundation expects to see some exciting research ideas emerging that could benefit those with NF1 learning disabilities as well as related conditions like autism. In late June in Los Angeles, CTF hosted a Schwannomatosis Workshop. The Foundation has made significant contributions to advancing the field of schwannomatosis research since 2005, both by funding numerous schwannomatosis projects and by hosting a series of Schwannomatosis Workshops to encourage collaboration between schwannomatosis scientists and clinicians. The Foundation’s investments have supported the development of the first mouse models of schwannomatosis, the first preclinical testing of candidate schwannomatosis pain drugs, advanced schwannomatosis genetics, and the establishment of the Schwannomatosis International Database. The June Workshop, led by Dr. D. Gareth Evans (University of Manchester), Marco Giovannini (House Research Institute), and Scott Plotkin (Harvard/MGH) was an opportunity for researchers and clinicians to share updates and plan next steps. As a result of this Workshop, the participants are developing a "state of the field" publication. In addition the Foundation announced the availability of $75,000 Schwannomatosis Awards (the recipients of these Awards will be announced early in 2012). July – New Young Investigators Funded: The Foundation announced the funding of six new Young Investigator Awards: three NF1 and three NF2, of which four are in the United States, one is in England, and one is in Australia. Topics addressed included targeting bone dysplasia in mice with novel drugs, understanding NF2 genetics, and developing an educational interventional clinical tool for aiding NF1 learning disabilities in children. In addition the "second Phase" of the NF Preclinical Consortium commenced. This is the Foundation’s large scale preclinical drug testing initiative which has formed successful collaborations with companies including Novartis, Genentech, and Avila Therapeutics. More news on NFPC will follow in early 2012. August – NF Registry Progress: Of all the new projects the Foundation has undertaken in the past few years, one of the most challenging has been the creation of an NF Registry. The Foundation has conducted extensive research to figure out how to do this well: how much data detail should be collected, how we can link this to research, etc. Interestingly, the registry "landscape" at large has evolved since we began this process. There is now keen interest from both clinicians and families in a registry where the affected individuals - rather than their doctors - enter the data. With this in mind, in August we partnered with StudyTrax, a highly experienced provider of registry management, to develop the NF Registry. The Registry will collect information from people affected by NF1, NF2 and schwannomatosis. Individuals or (for minors) their parent or NF News • Children’s Tumor Foundation | 5


research news guardian may enter data. A key goal of participation in the Registry is to connect people more closely with informational updates and with the opportunity to participate in NF clinical trials and research. The NF Registry prototype is now being pilot-tested, and we hope to unveil it to the public early in 2012. September – NF Tumormetrics Service Expands: A few years ago, the Children’s Tumor Foundation made an astute investment in a then-new technology being developed at Massachusetts General Hospital by Dr. Gordon Harris. The technology was to allow the threedimensional or "volumetric" imaging of tumors within the body so that doctors could more accurately assess tumor size, growth patterns, and response to treatment. Specifically, the Foundation’s investment - a $270,000 Contract Award - ensured that this technology could be tailored for use in NF, where tumors can be complex in structure and difficult to monitor accurately. Dr. Harris used these funds to develop the MGH NF TumorMetrics Service. In September, the Foundation provided a second Contract Award to Dr. Harris to make the NF TumorMetrics Service available at no charge to the NF Clinic Network. To date, a number of NFCN Affiliate Clinics have utilized this; for more information see the separate piece in this Newsletter. October – 2012 NF Conference & Forum Confirmed: The 2012 NF Conference has been confirmed for June 9-12, 2012 in New Orleans, LA. For the first time the Conference will be held adjacent to the NF Forum for patients and families. Further details about the agenda will be announced shortly.

November – NF Clinic Network Updates, and NF2 Conference Support: November saw the arrival of Annual Reports from the 44 Affiliate Clinics of the NF Clinic Network. The Annual Reports provide valuable insight into how NF clinical care is being delivered, and identify ways in which the Foundation can help to improve this. We are still processing the Reports but some nuggets so far: over 10,000 NF patients were seen in NFCN in 2011; and over half of NFCN clinics have referred or directed NF patients to clinical trials. We look forward to sharing a summary of the status of NFCN Reports in the coming months. In November we also announced that the Foundation will be providing $10,000 in sponsorship of the 2012 "NF2 - State of the Art" International Conference to be held in May in Manchester, United Kingdom. This is the third in a series of meetings that brings together preeminent, international NF2 researchers and physicians. We look forward to participating and are delighted to offer support. December: December was a busy month! The Foundation concluded the review process for applications to two of our funding programs: Clinical Research Awards and Schwannomatosis Awards. We hope to announce the recipients of these Awards in the next few weeks. Speaking of schwannomatosis, did you know that the Foundation has supported some of the greatest advances in schwannomatosis in the past few years? We are planning to expand our efforts in 2012 by creating a Schwannomatosis Consortium and, to help us design this initiative, we are releasing a Request for Information this month seeking input.

Dr. Annette Bakker Joins the Children's Tumor Foundation After an exhaustive, international search, the Foundation is pleased to announce the appointment of Annette Bakker, Ph.D. to the newly created position of Senior Vice President of Research and Drug Development. Dr. Bakker, a native of Belgium, holds a Ph.D. from the University of Antwerp. Her past experience includes serving as Oncology Group Leader at Janssen Pharmaceutica, and postdoctoral fellowships at Yale University and La Salpetriere, Paris. Most recently Dr. Bakker lived in Siena, Italy and served as the Oncology Head for Siena Biotech, where she created an oncology program from the ground up and managed a large oncology research initiative at the University of Verona. She joined the Children's Tumor Foundation’s staff in December. Dr. Bakker's appointment is part of the Foundation's effort to expand its neurofibromatosis medical and research programs, notably in 6 |

preclinical drug testing and clinical trials. As well as having a broad background in neuroscience and cancer research, Dr. Bakker brings the commercial expertise of liaising and negotiating with biotechnology and pharmaceutical companies. "We are delighted to have Dr. Bakker join us at a time when our preclinical and clinical programs are expanding," says Foundation Chief Scientific Officer Dr. Kim Hunter-Schaedle. "We have terrific preclinical and clinical programs in place, and Dr. Bakker will play a critical role in expanding these as well as forging new relationships with biotechnology and pharmaceutical companies." "I am thrilled to have Dr. Bakker’s experience and talent in our Foundation’s medical and research programs team," says Foundation President George Orfanakos. "She is a wonderful addition, brings an international perspective to our goals, and joins us at an important time. I am certain she will help accelerate our mission to end neurofibromatosis."


national programs Racing4Research at Rennsport Reunion IV In October, the Children’s Tumor Foundation was proud to participate in Porsche Rennsport Reunion IV, the world's greatest gathering of Porsche race cars and the drivers that drove them to victory. Porsche Cars North America and Mazda Raceway Laguna Seca hosted 20 NF Heroes and their families providing complimentary admission and lunch along with a private meeting with Detlev von Platen, Porsche Cars North America President and CEO, Bernd Harling, publicity chief for PCNA, and Wolf Henzler, Porsche factory driver and 2009 TOP: (L-R) Wolf Henzler, Detlev von Platen with the Pritchard Racing4Research driver. The Cayman Interseries family from San Jose. BOTTOM: NF Dad Drew Lowell sharing his family's story with Detlev von Platen, Wolf Henzler, and expanded their support of Racing4Research to the Bernd Harling. entire Cayman Interseries by putting the names of an NF Hero on every Cayman competing in the Rennsport weekend event and by creating a special "Rennsport Edition" Cayman S that was autographed by the legendary Porsche race car drivers in attendance and features the CTF logo. Proceeds from the sale of this one-of-a-kind Porsche will be donated to the Foundation.

2012 Rolex 24 Sneak Peek: Exciting New Venue We are adding an exciting new venue to our Racing4Research Daytona weekend in 2012. For the first time we will host our traditional Friday Night Family & Team dinner at Daytona International Speedway in the Velocitorium, formerly part of the Daytona 500 Experience. Families will be seated in the display area surrounded by exhibits featuring Daytona's rich racing history including the current Daytona 500 winning car. Children will have access to video games, pool tables, and air hockey, as well as a movie in the facility’s 250seat theater.

Racing4Research Program Returns for the Fourth-Consecutive Year at the 50th Anniversary Rolex 24 At Daytona, January 26 – 29 Since its debut in the 2008 running of America’s premier endurance race, the Children's Tumor Foundation has raised over $1.5 million through Racing4Research at the Rolex 24 At Daytona. The team will race in next month’s 50th Anniversary running of the 24-hour classic with Magnus Racing, a top Porsche entrant in the GRAND-AM Rolex Sports Car Series, with returning team drivers Ryan Eversley, Daniel Graeff, Ron Yarab, and Justin Bell, who will be doing double duty serving as a television commentator. “It is one thing to be a race car driver,” Eversley said. “That is something that is really cool to me, and something that I have always wanted to do, but to be able to use my racing to give back to the Children's Tumor Foundation and the NF community is something that I am very grateful for and extremely honored to be a part of.” Eversley, the 2011 GRAND-AM Continental Tire Sports Car Challenge ST (Street Tuner) Championship runner-up, will race with CTF for the second-straight year in the Rolex 24 while Graeff and Yarab have been team drivers since the program’s inception.

www.racing4research.org

TOP: CTF Driver Ron Yarab. BOTTOM: Drivers Daniel Graeff and Ryan Eversley at Daytona testing for the upcoming 2012 Rolex 24. Images from inside the Velocitorium NF News • Children’s Tumor Foundation | 7


national programs

01/15 ARIZONA ROCK'N'ROLL MARATHON & HALF Phoenix, AZ

02/26 DISNEY PRINCESS HALF AND 5K Orlando, FL

03/04 LITTLE ROCK MARATHON, HALF, 10K AND 5K Little Rock, AR

03/18 NYC HALF MARATHON

NF Endurance Team Runs the ING New York City Marathon On Sunday November 6, 2011, 45,000 participants ran a grueling 26.2 miles through the five boroughs of New York City in the annual ING New York City Marathon. Among them were 41 members of the NF Endurance team who were running with a special purpose in mind - to end neurofibromatosis. This year, our runners succeeded in raising over $120,000, all of which will go toward funding NF research. The NFE team was led by captain Mary Schafer, a New York resident and seasoned marathoner who completed the ING New York City Marathon for the NF Endurance program last year. Mary has been running since 1999 and she said, “I had already signed up for marathon #12 when a light bulb went on. I can do something I love --running -- in support of my family. Why not run marathon #13 at home in NYC for NFE?” Mary, like many of our participants, has a family member who lives with NF 1 and he is her reason for running.

New York, NY

03/18 PUBLIX GEORGIA MARATHON Atlanta, GA

03/25 DALLAS ROCK'N'ROLL MARATHON AND HALF Dallas, TX

04/15 GO! ST. LOUIS MARATHON AND HALF St. Louis, MO

04/21 JERSEY SHORE RELAY MARATHON Asbury Park, NJ

04/22

In preparation for the big day, participants and their family members and friends enjoyed a team pasta dinner in Little Italy the night before the race. The pasta dinner has become a tradition for the NFE team, and provides an ideal opportunity for runners and supporters to get to know one another and to share their reasons for running the event. While our NFE participants were running in this physically and mentally challenging event, approximately 40 family members, friends, supporters, and Children's Tumor Foundation staff, wearing the signature neon yellow NF Endurance T-shirts and hats, stationed themselves at mile 18 to cheer the runners on to the finish line with cowbells and shouts of encouragement. It was inspiring to see our runners complete the 26.2 mile challenge despite the rigors of the course and the grind on their bodies. As Mary said, “The NYC marathon is the world’s single greatest sporting event.” All of our ING NYC Marathon participants deserve a big congratulations for completing a task that only one percent of Americans accomplish, and for doing it with the goal of ending neurofibromatosis.

LONDON, ENGLAND MARATHON London, England

04/29 BIG SUR, CALIFORNIA MARATHON

If you are inspired by the accomplishments of the NF Endurance team and are ready to take on the challenge of running in next year’s ING NYC Marathon, or participating in any of our other NFE events, we encourage you to sign up at www.nfendurance.org. We would love to welcome you to our team and join in the effort to help end NF!

Big Sur, CA

07/08 NEW YORK CITY TRIATHLON New York, NY

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We are pleased to announce the appointment of Chrissie Connors as the Foundation's new NF Endurance Coordinator. Chrissie is from White Plains, NY, attended Fordham University, and formerly worked for Lutheran Family Health Centers in Brooklyn. An avid biker, Chrissie recently completed a 55-mile race around New York City and 62 miles in Maryland. Chrissie can be reached at 212-344-6633, ext. 251, or cconnors@ctf.org. www.ctf.org/nfendurance.html


Neon Nation

BOB SKOLD, Ultramarathon Man In October, NF Endurance Customer Service and Development Associate Bob Skold, who lives with NF2, accomplished the extraordinary feat of completing an Ultramarathon. He ran 50 miles in one day. Below is his account of the race:

The Philadelphia Rock’N’Roll NF Endurance Team crossed the finish line and raised over $80,000 to benefit NF Research.

"Finished my first ultramarathon, the Kansas Heartland 50-miler. The adventure brought both agony and ecstasy. It was something I really wanted to do with every part of my being. Running at night on the stark and lonely plains of Kansas with no hearing is a very soul-searching opportunity. It was the biggest, hardest, worst, best thing I have ever done. Thanks Wes and Jill and Elsie for cheering me at the finish line at 6:45 a.m. before the sun rose."

The San Jose Marathon was a wonderful event and raised over $7,800 for NF research.

The triumphant Long Beach Marathon team raised over $10,600 toward ending neurofibromatosis.

The Portland Marathon was a big success and raised over $26,000 for Children's Tumor Foundation programs.

www.nfendurance.org

NF News • Children’s Tumor Foundation | 9


national programs Every step makes a difference. UPCOMING WALKS 05/05 RALEIGH, NC NF WALK

05/05 ORLANDO, FL NF WALK

05/12 STATEN ISLAND, NY NF WALK

05/12 VERMONT NF WALK

05/19 MONROE, MI NF WALK

05/19 TULSA, OK NF WALK

05/20 CINCINNATI, OH NF WALK

06/10 NEW ORLEANS, LA NF WALK

08/24 INDIANAPOLIS, IN NF WALK & 5K RUN

09/23 ADDISON OAKS, MI NF WALK

VIRTUAL WALKS www.nfwalk.org

A MESSAGE FROM NF WALK DIRECTOR TRACEANN ADAMS

NFWALK

The NF Walk Program: 3 Years, 3 Billion Steps, and Over $1 Million Dollars Closer to Ending NF Our NF Walk motto is "Every Step Makes a Difference," and it has certainly held true over these last few years. Since the inception of the NF Walk Program in 2009, your hard work and dedication have helped us raise over $1 million dollars! To put that into perspective, a million dollars is enough to fund 10 Clinical Research Awards, 10 Young Investigator Awards, 15 Advanced Drug Discovery Awards, or provide significant support for our 44-member NF Clinic Network. Much progress has been made in NF research in the last three years, and the Walk Program has and will continue to play a major role in helping the Children’s Tumor Foundation function as the largest non-government funder of NF research. It is the work we do that will help lead to effective treatments for NF and eventually, someday, an end to the disorder. A key feature of the Walk Program is that it is a community-based event, organized by local volunteers, with teams comprised of five to ten members. This year we had 352 teams, and our goal in 2012 is to have 440 teams, each raising a minimum of $1000, in order to continue our yearover-year growth. The table below shows the Walk Program's impressive expansion over the past three years. YEAR 2009 2010 2011

TOTAL RAISED $195,960 $296,709 $569,482

WALK EVENTS 11 18 33

PARTICIPANTS 1065 2415 3986

Together we have taken almost three billion steps across the United States to raise NF awareness. The Children's Tumor Foundation is truly grateful for every volunteer, participant, and donation that has contributed to the outstanding success of the NF Walk Program. Thank you for an incredible 2011, and we look forward to 2012 when we’ll take more steps toward ending NF. • In order to serve you better, we have improved our website by making it more user friendly and informative. Please visit www.nfwalk.org for more information and to view the 2012 walk schedule. • Feel free to contact NF Walk Program Director Traceann Adams with any questions or concerns. She can be reached at 212-344-6633, ext. 236 or nfwalk@ctf.org.

Colorado

The Third Annual Denver, CO NF Walk was held on Sunday, September 11, 2011 at Clement Park. The event had fantastic weather and attracted a record turnout of 350 people. While it was the third NF Walk in Denver, several firsts occurred: the first ever NF Hero award was given to Jake Sensenbaugh, some entertaining children’s events were added (kids' fun run and carnival), and several representatives from the Colorado Avalanche hockey team attended to lend support to the cause. Several other traditions continued from previous years including having a great local band, McBath, entertain the participants, providing free refreshments to everyone who attended, and conducting a silent auction with some wonderful items. This year, nearly $30,000 was raised for NF research! 10 |

www.nfwalk.org


BRIANNA WORDEN NF HERO AND BEAUTY QUEEN!

New York

Nearly 200 people came to walk, help, and celebrate our NF Heroes at the New York City, NY NF Walk on October 1. It was a huge success, an inspiring day, and an unbelievable show of support. The participants walked a three-mile route in historic Battery Park along the picturesque esplanade of the Hudson River. The event included delicious refreshments, special visits from Cookie Monster and a magician, and a huge prize raffle. NF Walk NYC raised over $29,000, enough to fund two Drug Discovery Initiatives or bring a new scientist into neurofibromatosis research!

Florida

Over 200 people came from all over Florida to walk for NF in Jupiter! The Jupiter, FL NF Walk took place in Riverbend Park, and the event raised over $38,000. After completing the one-mile course, participants returned to amazing food including bacon-wrapped scallops, chicken satay, coconut shrimp, and Pad Thai provided by Too Bizarre Restaurant in Jupiter, FL. Fun for the kids included a gymnastic obstacle course, cupcake decorating, necklace making, and digging for dinosaurs.

Virginia

The first ever NF Walk in Virginia was a huge success raising close to $30,000! With over 200 participants and 15 teams, organizers could not have been happier with the turnout. From cupcake decorating to games for the children and an amazing auction, Fredericksburg, VA NF Walk was a wonderful event. Planning for next year has already begun!

NF Hero Brianna Worden and her mother, Janna Commando

NF Hero Brianna Worden was recently named Miss Teen New York International. Brianna was born with NF1 and has endured multiple surgeries. At age nine she was given a forty percent chance of ever walking again. Yet she is known for her amazing passion and zest for life. As Miss Teen New York International, Brianna travels throughout the United States educating people about neurofibromatosis, increasing awareness of NF, and raising funds for research. Foundation Staff George T. Orfanakos, President

Iowa

The NF Walk Des Moines was held in Raccoon River Park and featured a large number of day-of registrants totaling 225. A unique feature was the "NF Moms Rock" table adjacent to the registration area. Also, families were given "NF Family" labels with colored star stickers indicating if they were living with NF1 or NF2. After the walk, Julie and Lance Elmquist graciously hosted a hog roast at their home for all participants.

Research Kim Hunter-Schaedle, Ph.D., Chief Scientific Officer Annette Bakker, Ph.D., Senior Vice President of Research and Drug Development Min Yi Wong, Research Program Director Development and Volunteer Relations Rick Lepkowski, Chief Development Officer John Heropoulos, Senior Vice President Traceann Adams, NF Walk Program Director Jill Beck, Racing4Research Program Director Sarah Coulam, NF Endurance Program Director

Texas

This year Dallas hosted its first NF Walk. Held at Veterans Park, the Dallas, TX NF Walk attracted over 200 walkers on 13 teams, garnered the support of 17 sponsors, and raised more than $32,000. The Arlington Fire Department sent a truck in honor of all the NF Heroes and kids were able to take pictures with the firemen. The day’s festivities also included a clown, a face painter, a DJ and an exciting raffle.

California

This year over 150 walkers raised more than $25,000 at the San Diego, CA NF Walk. The event had 11 teams, 24 sponsors, a face painter, and an arts and crafts table for the kids. The day's NF Hero, Rubin Balbuena, gave an inspiring speech before the walk began, and the amazing MC Alan did a fantastic job of promoting the raffle items and cheering on all

Chrissie Connors, NF Endurance Coordinator Kelly Mills, Volunteer Relations Regional Manager Athina Moustakis, Volunteer Relations Coordinator Amita Patel, Volunteer Relations Coordinator Patrice Pancza, Program Director Bob Skold, NF Endurance Team Development Danielle Meyer, NF Endurance Program Coordinator Public Education and Patient Advocacy Mary Vetting, Communications Associate Chad Leathers, Digital Project Manager Katherine Wu, Design Associate Finance and Administration Tom Malone, Chief Financial Officer Sarah Anderson, Accountant Fredric Sinclair, Database Manager Monique Boucher, Database Associate Mohamed Amin, Database Assistant Rosa Amelia Perez, Project Coordinator Sarah Ill, Executive Assistant NF News • Children’s Tumor Foundation | 11


national programs

Meet The Board Suzanne Earle Chairperson Emeritus

The Children’s Tumor Foundation is pleased to announce the dates for its annual 2012 NF Camp in Emigration Canyon, Utah. This will be our 16th year of hosting some very special campers for two very special weeks over the summer. NF Camp is a unique opportunity for teens and young adults, ages 12 to 21, facing the challenges of living with NF, to spend time with others who share similar issues. The environment is supportive and friendly, and the week is filled with a variety of great activities in the mountains of Utah. Two one-week sessions will be held as follows: Week 1 – Saturday, July 14th – Friday, July 20th Week 2 – Saturday, July 21st – Friday, July 27th Camp tuition is $650 for the week, excluding transportation. Through the generosity of many of our supporters, tuition scholarships will be available again this year, and in cases of demonstrated need, the Foundation will also provide financial support for transportation to and from Salt Lake City. So mark your calendars, and start making plans. The applications and scholarship request forms are downloadable from www.ctf.org. Apply early – spots fill up very quickly, and you don’t want to miss out on this wonderful opportunity!! For more information, contact Patrice Pancza at 212-344-6633, ext. 235 or ppancza@ctf.org.

SPONSOR A CAMPER go to CTF.org/CampSponsor

/ go to CTF.org

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Hometown: Jamesburg, New Jersey Current Town: "I moved to St. Petersburg, Florida when I was five years-old." Education: St. Petersburg College Work with the Foundation: "My oldest daughter, Erin, was diagnosed with NF2 in 1990 at the age of 12. I began working with the Foundation as a volunteer in the Florida Chapter in 1996. I served as Treasurer, Vice President, and two terms as President of the Florida Chapter. I was also President of the Chapter/Affiliate Council of the Foundation for two terms from 2001-2005. I have been a National Board Member since 2001, serving as Secretary from 2004-2006 and Chairperson of the Board from 2006-2010. Through my work with the NF community I have made lifelong friends who I love. I can't imagine my life without them. They are my silver lining to having neurofibromatosis in my life." Favorite Memory with the Foundation: "Serving as Chairperson of the Board of the Children's Tumor Foundation was both a pleasure and a privilege. As Members of the Board, we hold a sacred trust to carry out the mission of the Foundation. This mission has the potential to turn a life around through support, the development of clinical centers, the expansion of public awareness, and the funding of research to end neurofibromatosis. We cannot always choose the things that happen to us but we can choose the path we take to overcome those things. And we can offer hope, the best comfort for this imperfect disorder." Favorite Hobby: Playing tennis.


regional news Wisconsin

On September 24-25, 2011, Connected for a Cure hosted its third annual 3-on-3 Basketball Tournament -- "Shoot for a Cure" -- in Oshkosh, WI to raise awareness and funds for NF research. The tournament and pasta dinner raised over $4,000. Approximately 100 people shared a meal, bid on high-end silent auction items, including an autographed Green Bay Packers Football, and played in the tournament. Special thanks to The Boys and Girls Club of Oshkosh. The beautiful facility served the needs of "Shoot for a Cure" wonderfully, and introduced a lot of people to the programs they have to offer as well. It was so special to see two worthy organizations working together to serve the needs of others!

Ohio

The Markland family hosted the third annual "Haunt 4 A Cure" on Oct. 15, 2011 near Cincinnati, OH. This event has raised nearly $15,000 over the past three years. Festivities included music, dancing, dinner, a raffle, a silent auction, and a family-friendly haunted hayride. In the spirit of Halloween, adults and children alike dressed in costume. Friends, supporters, neighbors, and many NF families from the area attended the fundraiser, as well as staff members from the Cincinnati Children's Hospital NF Clinic. Pictured: Rodney and Jill Markland.

Florida

It was another great year for the Florida Golf Tournament at the Arnold Palmer Bay Hill Country Club in Orlando, FL. With close to 100 golfers and a beautiful, warm day, everyone was in good spirits as they teed off to raise funds for NF research. The tournament was followed by a festive dinner at Buca di Beppo attended by 150 people. Thank you to Wireless Zone and Buca di Beppo, the tournament’s lead sponsors and ongoing supporters of the Florida Chapter. Pictured: Chris Burrell, who lives with NF1, pictured with volunteers from Buca di Beppo.

Florida

The first “One Wish from Jeane” benefit, in memory of NF hero Jeane Marie Crouse, was held on November 12, 2011 in West Palm Beach, FL at Duffy’s Sports Grill, the event's sponsor. Guest of Honor, Mark “Super” Duper of the Miami Dolphins gave generously of his time and talent by donating memorabilia signed by himself and other Dolphin greats Mark Clayton, Nat Moore, Lorenzo Hampton, and Dan Marino. Joining the event with Mark was fellow Miami Dolphin Lorenzo Hampton. Bill Brooks, a member of the Children’s Tumor Foundation Board of Directors, gave a heart-felt speech on being a parent of a child with NF and what it means to have hope for a cure. The benefit celebrated the purpose-filled life of Jeane Marie Crouse. Jeane was diagnosed with neurofibromatosis at six-months-old. On December 26, 2010, Jeane’s struggle with NF ended. Jeane Marie left behind a wish that there be a treatment; a treatment for the painful tumors that can affect every nerve in the body and also a treatment for the heart and soul which can become emotionally battered, tired, and worn from the struggle. The doctors will take care of the tumors and Camp Kostopoulos will help treat the heart and soul. Cec and Bill Crouse, Jeane's parents, hosted the benefit and raised over $15,000 for NF research.

Meet The Staff Sarah Coulam Director NF Endurance

Hometown: Croton on Hudson, New York Current Town: Manhattan, New York Education: "I received my undergraduate degree from Denison University, and am currently attending Columbia University for a Masters in Fundraising Management." Work with the Foundation: “I work on the NF Endurance Program which allows participants an opportunity to run for a reason. People from all over the country, and now even the world, sign up for the program and raise funds on behalf on the Foundation. We provide our athletes with support along the way including a fundraising web page, education on the work being done to help end NF, and a VIP race weekend.” Favorite Memory with the Foundation: “My favorite memory so far is cheering with the Twin Cities Marathon NFE Team in October. The team set up cheering stations at mile 19 for the marathon and mile 8 for the 10-miler with a tent, cheering supplies, a live band, and a whole crowd of dedicated volunteers dressed from head to toe in neon yellow. The team cheered for every single NFE runner, and several of the volunteers even ran alongside the participants for a few minutes in order to encourage them. In addition, a volunteer ran ahead of each runner to the cheering tent so that our emcee could announce their name as they passed by. For the second year in a row, we won the award for best cheering station on the course. It is truly amazing to see a team of volunteers come together on race day for a fantastic cause.” Favorite Hobby: “Running. I finished my ninth marathon in NYC with the NF Endurance Team. Next up is the 2012 Lake Placid Ironman.”

NF News • Children’s Tumor Foundation | 13


regional news

Stories of NF:

NEURO-WHATTA???? Hi! My name is Diane, and I have Neurofibromatosis 1 (NF1). Growing up, I had no idea that I had NF, let alone heard of it! All I knew was that I had a ton of "birthmarks" scattered throughout my body, some even looked like little freckles tossed across my neck, armpit, and groin area. I hated it and tried in vain to cover up as many of them as I could with clothing. As much as I loved summer, I also dreaded it since it meant tank tops, shorts, and bathing suits.

After a while, I started to notice that I was getting these strange bumps all over my body. Some hurt, but thankfully a majority of them did not. I didn't go to the doctor since they were mostly painless, and I figured my mom would claim they were pimples and tell me to eat more vegetables and less junk food. President George Orfanakos with Gala Co-Chairs Carol Lerner and Mady Donoff.

pMassachusetts

The New England Annual Fall Gala was held on October 15, 2011 at the Hyatt Regency in Cambridge, MA. It was a wonderful event and over $75,000 was raised for the Foundation. The Michael and Helen Schaffer Foundation was honored with the 2011 Humanitarian Award. Dr. Mira Irons and Dr. Nicole Ullrich of Children’s Hospital Boston received the Clinical Excellence Award, and Lifetime Volunteer Awards were granted to Rita and William Needel.

Massachusetts

On December 8, 2011, the iconic Prudential Tower in Boston, MA was illuminated blue in honor of the Children’s Tumor Foundation. While every night in December was dedicated to a different charity, the Foundation was honored to have been chosen from among thousands of worthy Massachusetts philanthropies for its excellent nonprofit work.

New York

Everyone was in the chips at the Martin family’s 2011 Casino Night. Thirteenyear-old Kevin Martin was the evening’s VIP at this annual event organized by his parents, CTF Board Member Linda Martin and her husband, Tim. Everyone who attended the event, held at the lovely Davenport Beach Club in New Rochelle, went home winners. The Casino Night featured a “High Roller Prize” and an exciting raffle which included an autographed tennis outfit worn in the U.S. Open by Serena Williams.

New Hampshire

On July 17, 2011, “K’s Ride for a Cure” in Salem, NH brought together friends and family and raised over $2,000 for the Children's Tumor Foundation. The day included biking, running, raffles, family fun, and a cookout. The 2nd Annual event is already in the planning stages!

California

The California Chapter hosted a Bunco Party in honor of NF Hero Dakota Anderson on October 25, 2011 to raise funds for the Racing4Research Program.

Obviously I had gone to the doctor for other ailments, but never did they investigate my "birthmarks" or "bumps," thus I thought nothing was wrong. In 2007, at age 29, my doctor suspected that I may have NF. Like most people upon first hearing about NF, I was thinking, "neuro-whatta????" When I got home, I looked up neurofibromatosis, and the symptoms matched mine. The birthmarks, I learned, are called café-au-lait spots and the bumps are classified as neurofibromas. My short stature is another trademark, as is my hypertension, though I think my high blood pressure is also due to genetics, diet, and stress. Then I clicked on "images." My…jaw…dropped. The images that I saw initially did NOT resemble me at all. But then I saw other images that were less alarming and did look like me. I was stunned. I was not sure if my own NF would progress to where I looked like the shocking photos, and I’ll admit I did cry. To confirm that I had NF, my doctor recommended an MRI and an appointment with an ophthalmologist. The results verified the doctor's diagnosis of NF1. Wanting to find other individuals who had the same disorder (NOT disease - after all you can’t catch NF by hanging out with me), I poked around the web and found discussion forums on www.inspire.com and made a few friends. Then I decided to try www.facebook.com to see if they had any NF groups. I honestly didn’t think I’d find anything but I discovered that there were groups after groups after groups. I was ecstatic! There were other people like me out there! Even more comforting, some were close by!! I quickly made friends with other NF’ers all over the world, and I furthered my knowledge and understanding of this complex disorder. I underwent two separate surgeries to have a total of 10 tumors removed from my body. I was very fortunate that none of them were cancerous. As time goes by, the scars fade away. But on the flip side, my body does and will create more tumors. For the most part, I have NF but it doesn’t have me. However, I am human and there are times that I do feel it has me. I still shy away from certain clothing and materials because all I see are the tumors poking through screaming, “Look at me! Look at me!!” Granted, I’m not cloaked in clothing from neck to wrist to ankles anymore, but still, having the freedom to buy anything off the rack would be bliss. On the dating level, I question if the guys will care that I am "flawed." When do I mention that I have NF? I’ve dated on and off through the years but nothing that has been serious. None of the guys seemed to have had an issue with the "spots and bumps," or at least have never said anything to me directly. As the years go on though, I have more tumors popping up (and scars from surgeries), so there's always a little voice in the back of my head, "Will they care that I have NF?" But those pessimistic thoughts are rare, and I refuse to have the "Eeyore" view of life. There are so many people in the world who have it worse than I do, NF or no NF. I'd much rather view my life as a martini glass half full - because the part that I drank has been pretty darn good.

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The Stars Aligned for a Successful Children's Tumor Foundation Benefit Dinner Continued from page 1

laughs throughout the evening. Attendees also enjoyed bidding on the various wonderful items in the silent auction, and were energized by the always-rousing live auction, with wonderful experiences being offered such as a week in a spectacular home in Aspen and a New York Jets VIP experience, which was auctioned off by Jets placekicker, Nick Folk. Poignant speeches were given by Quicken Loans founder, Dan Gilbert and his wife, Jennifer, but the evening took on special meaning when their son and newly-appointed CTF Ambassador, Nick Gilbert took the stage. His charming, witty, sage speech, complete with banter with his father who stood by his side as he spoke, captivated and inspired and brought the audience to their feet. In Nick’s words, “No, there is nothing to like about NF nor all of the things that can happen to people who have NF. I don’t have to like it. But I also don’t have to be a “victim” just because I was born with NF. I did not choose to live with NF. But I do have a choice on how I live. And I choose to live life by enjoying every moment and to always look on the bright side of everything.”

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 Children's Tumor Foundation is a 501(C)(3), not-for-profit organization and recipient of a four-star rating from Charity Navigator. The Foundation is dedicated to improving the health and well-being of 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 is underrecognized and underdiagnosed yet affects more people than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined. The Children’s Tumor Foundation funds critical research to find treatments for NF. In addition to benefitting 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. Editor Mary Vetting, mvetting@ctf.org Creative Katherine Wu, kwu@ctf.org

Board of Directors Stuart Match Suna, Chairperson Bruce R. Korf, M.D., Ph.D., Chairperson, Medical Affairs Committee Honorary Allan E. Rubenstein, M.D., Director of Medical Affairs Emeritus George Orfanakos, Dianne Stern, David Stern, Nick Gilbert, Jennifer Gilbert, Dan Gilbert, the Cleveland Cavaliers' Moondog, Dr. Roger Packer, and Bashi Packer

NF Hero Izzy Botko, her parents Kate Murphy and Huck Botko, and Moondog from the Cleveland Cavaliers

Bill Emerson, CEO of Quicken Loans

Daniel Altman, Vice Chairperson Laura Ganio Bona William Brooks Colin Bryar John Catsimatidis Suzanne Earle, Chairperson Emeritus Mark Ebel Aram Fuchs Tracy Galloway Daniel Gilbert John Golfinos, M.D. Daniel Graeff Richard Horvitz (Honorary) Linda Martin, Secretary John McCarthy, Treasurer Emcee Zach Braff and New York Jets placekicker Nick Folk during the Steve McKenzie evening's auction Michie O'Day (Honorary) Denise Ogle George Orfanakos JoAnne Pastel Jason Pontin Harold Ramis (Honorary) Alan Robbins, M.D. (Honorary) Robert Schaffer Doris Schnuck (Honorary) Carolyn Setlow Tara Skirzenski Ed Stern (Pro-bono Counsel to MAC) L-R: Dan Gilbert, Rose Match Suna, Nick Gilbert, and Stuart Match Suna Rachel Tiven David Viskochil, M.D., Ph.D. Nate Walker NF News • Children’s Tumor Foundation | 15 Peggy Wallace, Ph.D. Dr. Roger Packer of the Children's National Medical Center


Non-Profit Org. U.S. Postage PAID New York, NY Permit #4238 95 Pine Street, 16th Floor New York, NY 10005 www.ctf.org

The NF Forum allows those living with NF, and their families, to connect, support, and learn from each other while attending seminars on relevant topics pertaining to neurofibromatosis. In 2012, for the first time, the Children’s Tumor Foundation will hold its annual NF Forum adjacent to the NF Conference. This will provide an unprecedented opportunity for the Forum to hold familytargeted sessions, benefiting from the presence of many international physicians, researchers, and clinicians, sharing the latest in medical advancements. Mark your calendar and plan to attend!

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June 8-10, 2012 • Hilton New Orleans Riverside, LA Being hosted adjacent to the NF Conference For more information, please contact Traceann Adams at 212-344-6633, ext. 236, or tadams@ctf.org.


Winter 2011 Newsletter