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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 Children's Tumor Foundation Invites You to Join the NF Registry The Children's Tumor Foundation is pleased to announce the creation of an online NF Registry. Launched at the 2012 NF Forum in New Orleans, LA, the purpose of the registry is to find people who may be eligible for clinical trials or other research studies being conducted in the field of neurofibromatosis (NF), and to determine the commonality of specific NF characteristics. The NF Registry can be found at For those who participate in the NF Registry, after entering their information (or their child's information), the Children’s Tumor Foundation will look for clinical trials or research studies

that are seeking people with the participant's NF characteristics and age. If they find a match, the Children’s Tumor Foundation will provide the participant with contact information at the institution conducting the research, so that direct contact can be made. The information contributors provide about their NF will be summarized along with data from other registry participants so that those researching NF can understand how common specific characteristics of NF are, and what treatments are being used. The Children’s Tumor Foundation may share data in the registry with individuals or institutions conducting

clinical trials or research studies, companies developing potential drugs or other treatments for NF, or other parties involved in research of patients with NF, but any information that identifies the participant will be removed. To join the NF Registry please go to For more information about this important development in the fight against NF, please contact Annette Bakker, Chief Scientific Officer of the Children's Tumor Foundation, at 212-344-6633, ext. 7029 or

NF Forum 2012: Hope, Help, Heal The Children's Tumor Foundation's fourth annual NF Forum was convened in New Orleans, LA, June 8-10, 2012, with the theme "Hope, Help, Heal.” The largest number of Forum participants thus far, approximately 200, enjoyed a weekend of seminars, questionand-answer sessions, and social events that brought them into contact with the world's foremost NF researchers and gave them the opportunity to build supportive relationships with one another. The Forum, co-chaired by Amanda Bergner, MS CGC of Johns Hopkins University, Dr. Tena Rosser of the Children's Hospital of Los Angeles, and Murray McCartan, NF Endurance Team Captain of the Twin Cities Marathon, Jim Bob and Laurée Moffett receive an award of recognition at the NF Forum Awards Dinner for their dedication to fighting neurofibromatosis.

continued on page 13

L-R: Laurée Moffett, Jim Bob Moffett, John Risner, Foundation President, Stuart Match Suna, Chairperson of the Board. NF News • Children’s Tumor Foundation | 1

NEW FACES AT THE FOUNDATION KRISTINE POIRIER Kristine joined CTF in April as a Program Coordinator in the Foundation's Boston office. She is originally from Wemouth, MA, graduated from Syracuse University, and now resides in Norwell, MA. Before joining the Foundation, Kristine owned her own Women’s Clothing Boutique, Franny P, named after her daughter who has NF1. Kristine can be reached at 617-456-4707 or

Turning Flowers Into Funding On July 14, 2012, a group of 40 friends and family gathered in Carver, Massachusetts to raise funds for the Children’s Tumor Foundation by selling freshly dug daylilies. The idea for this event occurred to organizers Rich and Bonnie (Kingsbury) Banks the night they were told their five-year-old great niece, Kaylee, had neurofibromatosis. Planning the event and turning their daylily field into funds for NF research has helped the Banks cope with Kaylee's diagnosis. The event inspired all involved, from the teenage volunteers to State Senator Marc Pacheco who stopped by to show support. The Banks family hopes that as the flowers bloom each year, people will refer to them as “our Children’s Tumor Foundation daylilies.”

Children's Tumor Foundation Board of Directors Stuart Match Suna, Chairperson Daniel Altman, Vice Chairperson John McCarthy, Treasurer Linda Martin, Secretary Bruce R. Korf, MD, PhD, Chairperson, Medical Advisory Committee Suzanne Earle, Chairperson Emeritus Laura Ganio Bona William Brooks Colin Bryar John Catsimatidis Mark Ebel Aram Fuchs Tracy Galloway Daniel Gilbert John Golfinos, MD Daniel Graeff Steve McKenzie JoAnne Pastel 2 |

Laura Perfetti Denise Pitzman Jason Pontin John W. Risner Robert Schaffer Tara Skirzenski Rachel B. Tiven David Viskochil, MD, PhD Nate Walker Peggy Wallace, PhD Honorary Richard Horvitz Michie O'Day Harold Ramis Alan Robbins, MD Doris Schnuck Carolyn Setlow Ed Stern, Pro Bono Counsel

JUDI SWARTOUT The Foundation's new Chief Financial Officer is originally from Alabama, but moved around a lot. She spent many years in California and now lives in Manhattan. Judi earned a bachelor’s degree at California State University - Sacramento, and a master’s degree at the University of Southern California. She most recently worked at Parrish Medical Center in Titusville, Florida. CTF is very pleased to welcome her to her new role. Judi can be reached at 212-344-6633 ext. 0062 or LORI WEITZEL The Children's Tumor Foundation is pleased to announce the appointment of Lori Weitzel to the position of NF Endurance Team Support Manager. Lori is from Plainview, NY, received her undergraduate degree from the State University of New York - Buffalo, and earned a master's degree from Hunter College. She formerly worked with the ASPCA, and lives in Brooklyn. Lori can be reached at 212-344-6633 ext. 8548 or GARRETT GLEESON The Foundation is pleased to welcome Garrett back in the new role of Program Director. Garrett previously worked for the Foundation as Communications Director before working for the Iraq and Afghanistan Veterans of America for the last year. Garrett’s passion for CTF’s work stems from the memory of his stepfather, who passed away from complications of NF, and his experiences with the many families committed to the Foundation’s cause. He is from Garden City, NY, received a BA from Johns Hopkins University, an MA from Syracuse University, and currently resides in Brooklyn. Garrett can be reached at 212-344-6633 ext. 8545 or JULIE PANTOLIANO The Foundation welcomes Julie as the new Volunteer Relations Associate for New York, New Jersey, Pennsylvania, and Delaware. She is from Bergen County, NJ, is a graduate of Johnson & Wales University in Providence, RI, and currently lives in Jersey City, NJ. Before joining CTF, Julie worked at GDS International, a business to business networking event company. Julie can be reached at 212-344-6633 ext. 8551 or CAROLYN CASTELLANO The Foundation is pleased to announce that Carolyn has joined the staff as Project Director, Major Events. Carolyn grew up in Long Island, NY, is a graduate of St. John’s University in Queens, NY, and now resides in Bayside, Queens in New York City. She's worked in the nonprofit field for eight years, specifically in special events fundraising for the New York City Opera, Vantage Consulting Group, Inc., Young Survival Coalition, Inc., and, most recently, as an independent event consultant. Carolyn can be reached at 212-344-6633, ext. 8549 or

foundation news Children’s Tumor Foundation Invests $884,000 in Neurofibromatosis Research and Development The Children’s Tumor Foundation is delighted to announce the funding of 11 Young Investigator Awardees (YIA) for the 2012 round. YIA research focuses on basic and translational biology of NF1, NF2, and schwannomatosis. The 2012 YIA recipients include six postdoctoral and five predoctoral awardees.

LOOKING FORWARD Here are a few events that may be of interest. For a complete listing or more information, please see 09/13 - Little Rock, AR Dancing with Our Stars Red Carpet for Research Event 09/16 - Beaverton, OR End of Summer Picnic 09/16 - St. Louis, MO

YIA Postdoctoral Awardees Jean De La Croix Ndong

Tao Sun

Vanderbilt University The Nf1osx -/- mice and CNP: a new inducible pre-clinical model and a novel strategy to understand and treat NF1 tibial pseudoarthrosis.

Washington University in St Louis, School of Medicine, Department of Pediatrics Sex differences in cyclic AMP signaling impact NF1-associated gliomagenesis

Yuan Wang

Pamela Vanderzalm

University of Michigan Therapeutic intervention of NF1asscociated cognitive deficits and optic nerve gliomas during early postnatal stages

The University of Chicago Dissecting merlin function at the membrane

Rebecca Dodd

Rebecca Lock

Porsche Club of America Auto Show 09/30 - Boston, MA NF Symposium at Massachusetts General Hospital

Duke University Medical Center Investigating tumor biology in a novel mouse model of inducible NF1-driven soft-tissue sarcoma

Brigham and Women’s Hospital, Inc. Developing novel therapies for malignant peripheral nerve sheath tumors

10/08 - Washington, D.C. 10/19 - Rocklin, CA Third Annual Fiesta Night

A Night to Remember

Richard Hugh Frost Bender

Amish Patel

Washington University in St. Louis Neurofibromin ras-molecule specific regulation of neural stem cells.

UT Southwestern Medical Center Epigenetic mechanisms underlie malignant peripheral nerve sheath tumor development

Jeff Gehlhausen

Gerald Sun

Indiana University Generation of a novel, accurate murine model of neurofibromatosis type 2 and the genetic validation of a therapeutic target for schwannoma development

Johns Hopkins University Neurofibromin I and regulation of neural stem cell fate choice

Fritz Lipmann Institute, Jena, Germany Axonal merlin regulates Schwann cell behavior via neuregulin signalling

Fourth Annual Saugatuck Cup CureNFwithJack Golf Classic

YIA Predoctoral Awardees

Alexander Schulz

10/06 - Westport, CT

Children's Tumor Foundation

Annual New England Fall Gala Saturday, October 13, 2012 7:00 PM – Cocktails 8:00 PM – Dinner Hyatt Regency Cambridge 575 Memorial Drive Cambridge, MA Silent and Live Auctions Music • Dancing For more information: John Heropoulos 617-456-4706 or NF News • Children’s Tumor Foundation | 3

research news

NF Conference: The Premier Annual Event in the Neurofibromatosis Research and Clinical Calendar Rhona’s first time attending the NF Conference, and we’re excited about her continued interest in the field. • Dr. Gehlhausen, from Dr. Wade Clapp’s lab, presented his work on a novel NF2 animal model in which mice develop hearing loss that correlates with NF2 progression in humans. The 2012 NF Conference was held June 9-12 in New Orleans, LA. The NF Conference, founded and hosted by the Children’s Tumor Foundation since 1985, is the world’s premier gathering of scientists and clinicians dedicated to advancing research and care for individuals living with NF1, NF2, and schwannomatosis. The NF Conference has grown significantly in recent years, which reflects an expanded understanding and interest in neurofibromatosis research and development. This year’s Conference was chaired by two pioneers in NF research and care, Dr. Helen Morrison, a top NF2 scientist from the Fritz-Lipmann Institute in Jena, Germany, and Dr. Brigitte Widemann, a world-class NF clinician from the National Institutes of Health. The agenda featured a balanced collection of basic science, clinical care, and clinical trials presentations regarding NF1, NF2, and schwannomatosis.

[Ed. Note: CTF is providing funding, through a YIA to Dr. Gehlhausen (see page 3), to expand this research to understand the temporal and anatomical distribution of schwannoma development, functional studies of hearing loss, and vestibular dysfunction that are observed in human progression of NF2.]

• Dr. Scott Plotkin gave an informative overview of the REINS [Response Evaluation in NF and Schwannomatosis] initiative. • Rene Bernards delivered an excellent presentation titled "Approaches to Guide us in Choosing Therapies in Cancer." He explored Dr. Scott Plotkin how patients are sometimes enrolled in clinical trials in which the agents do not work and how we may be able to optimize the results of trials. [Ed. Note: Dr. Annette Bakker, CTF’s Chief Scientific Officer, feels that Rene Bernards presentation underscores the importance of the NF Registry launched

Following the Conference, noted experts in the field of NF shared their thoughts on the meeting's highlights.

by the Children’s Tumor Foundation (see page 1). This will help identify patients that should receive clinical benefit from specific agents. To learn more about the registry and to participate, please visit:]

Drs. Helen Morrison and Brigitte Widemann: "The NF Conference is a unique platform for basic research and clinical work. While growing, the Dr. Helen Morrison Dr. Brigitte Widemann Conference is still small enough that we can communicate, review, and organize efficiently. Below are a few specific examples of the exciting breakthroughs reported at this year's NF Conference: • The first keynote lecture from Dr. Luis Parada presented his work which showed that CXCR4 was expressed in MPNST [malignant peripheral nerve sheath tumors – a rare but potentially fatal manifestation of NF1], pointing to the potential benefit of using CXCR4 inhibitors as Dr. Luis Parada therapy for MPNSTs. • Dr. Rhona Mirsky, a prominent Schwann cell biologist, delivered an illuminating presentation about the plasticity of Scwhann cells and the molecular pathways present in an injury model. This was 4 |

Dr. Roger J. Packer, Senior Vice President, Center for Neuroscience and Behavioral Medicine, and member of the Foundation’s Medical Advisory Committee: "For me, the overwhelming highlight of the meeting was how quickly the field of neurofibromatosis has transformed itself into a therapeutic one. Multiple sessions, both for children and adults with NF1 and NF2, highlighted the rapid progress that has been made in the molecular understanding of the disease and how these understandings have already resulted in the development of multiple clinical studies. Working groups and established consortiums now exist to perform these studies. The next greatest challenge is how to make these studies even more biologically informed, evaluating enriched patient populations with the type of molecular and clinical characteristics most likely to benefit from therapy. Another major challenge remains in designing these trials so as to not put patients at undue risk for complications that are significant but, unlike the situation in many diseases, are chronic." Dr. Roger J. Packer

Dr. Bruce Korf, Chairman of the Children's Tumor Foundation's Medical Advisory Committee:

Dr. Bruce Korf

"The most salient aspect of the Conference for me was the discussion of treatment endpoints for the various forms of NF and the consideration of candidate therapeutics." Additionally, Karen Cichowski, the Director of the Foundation’s NF Preclinical Consortium, delivered a presentation at the Conference about the Consortium and its impressive progress.

Dr. Karen Cichowski

Next Steps Following each NF Conference, the Foundation, the Conference Chairs, and the session Chairs publish a report outlining the presentations made throughout the week. This report, published in top medical journals, informs a broad spectrum of the research and clinical communities about important advances in NF research, improvements in care, and next steps that need to be taken in the search for treatments and a cure. Your Investment at Work Drug Discovery Initiative Research Yields Encouraging Results, Receives Follow-On Funding Dr. Cristina Fernandez-Valle, an NF2 researcher in the Burnett School of Biomedical Sciences at the College of Medicine at the University of Central Florida, received two grants from CTF in 2011. A pre-doctoral student in her laboratory, Alejandra Petrilli, received a Young Investigator Award (YIA) and Dr. FernandezValle received a Drug Discovery Initiative (DDI) grant. The goal of the projects was to establish protocols for using mouse merlin-null schwannoma cells in a high-throughput screening format. Once this primary objective was met, the team conducted a screening of the Library of Pharmacologically Active Compounds (LOPAC) in conjunction with the Sanford-Burnham Medical Research Institute (SBMRI) located in Orlando, Florida. The results identified 40 molecules in the 1284 compound library that slowed the growth of merlin-null Schwann cells. The results of this pilot study were used as preliminary evidence in three grant applications made to the National Institutes of Health and the Congressionally Directed Medical Research Program funded through the U.S. Department of Defense. The million dollar proposals, if funded, will use this new approach to screen two larger compound libraries, again in conjunction with the experts at SBMRI. In addition, CTF is funding a follow-up project in Dr. Fernandez-Valle’s laboratory to confirm and validate the initial “compound hits” from the LOPAC library. The overall hope with this project is that compounds will be identified that are already in clinical use for other conditions and which could be “fasttracked” into clinical use for NF2. Dr. Cristina Fernandez-Valle and Alejandra Petrilli

Children's Tumor Foundation Funds the First Schwannomatosis Animal Model The laboratory of Dr. Marco Giovannini is interested in the genetic events that contribute to tumor development. Using advanced gene targeting Dr. Marco Giovannini methods, generating mouse models of cancer that accurately reproduce the genetic alterations present in human tumors is now relatively straightforward. The challenge is to determine to what extent such models faithfully mimic human disease with respect to the underlying molecular mechanisms that accompany tumor initiation and progression. Using conventional and conditional loss-of-function and gain-of-function mutations, scientists in Dr. Giovannini's lab have generated several mouse models of neurofibromatosis type 2 and, more recently, of schwannomatosis. Interestingly, although initiated by a Smarcb1 mutation, molecular analysis of peripheral nerve tumors in the schwannomatosis mouse model showed a profile of cell signaling pathway activation similar to that of NF2-associated schwannomas. In addition to the mice, cells derived from mutant animals are used to study the function of these genes in cell culture models. These represent excellent model systems for investigating the molecular mechanisms that underlie schwannomatosis and its relationship with NF2. "Our mouse models should be suitable to further dissect pathways critically important in schwannoma development and serve as invaluable tools to test new intervention strategies. We have also derived a series of cell lines that reproduce the disease when grafted into peripheral nerves. These may also facilitate design of better therapies for schwannomatosis patients," concludes Dr. Giovannini. [Ed. Note: These studies were supported by CTF Schwannomatosis Awards, in 2007, 2008, and 2011.] PROFILES The Children’s Tumor Foundation is excited to announce the recent addition of Marco Nievo and Kathleen Berentsen as consultants to the Foundation. Marco Nievo is a PhD in biological chemistry and a certified patent attorney. He will provide the professional Intellectual Property and competitive services necessary to adapt the Foundation's business model where necessary. Dr. Marco Nievo

Kathleen Berentsen, a Certified Genetic Counselor and Clinic Coordinator with long-standing experience in neurofibromatosis, will work on improving care and coordinating best practices in the Foundation’s NF Clinic Network. Kathleen Berentsen

NF News • Children’s Tumor Foundation | 5

national programs

Racing4Research Continues to Fuel the Cure with Events throughout the Nation was what made it really worthwhile. To get that many eyeballs looking at a CTF-liveried stock car for two days in a row in a major media market, with television coverage of both races reaching people at home, was a major coup for us. Hopefully a lot of NASCAR fans became acquainted with the Children’s Tumor Foundation and recognized what we are trying to do through racing on their behalf.”

Actor Patrick Dempsey with CTF families in Laguna Seca

The Racing4Research program is at the mid-year point and has shifted into high gear with events across the country. “As we begin the second half of the 2012 racing season, our program has never been busier or more successful,” said Jill Beck, Director of the Racing4Research program at the Children’s Tumor Foundation. “We are on track to raise $1 million to support NF research this year but couldn’t have even dreamed about that if it weren’t for an ever growing group of teams, drivers, and series and corporate partners that have joined us in our ongoing fight against NF.” Quicken Loans, the nation’s leading online lender, donated one of its nine 2012 race title sponsorships of the No. 39 Stewart-Haas Racing Chevy to CTF for the Sonoma race and also joined eBay Motors and eBay Mobile as major backers of the No. 4 eBay Motors/ eBay Mobile/Quicken Loans/Racing4Research Porsche GT3 at the Rolex 24. That effort alone, with Daniel Graeff, Ron Yarab, Ryan Eversley, and Justin Bell at the wheel, raised $600,000 for the Children's Tumor Foundation.

Graeff and CTF/R4R are set for a second K&N Series start on the oval track at Colorado National Speedway, another step in what could be an expanded program in the NASCAR series in the near future. Bell is scheduled to start the second half of his racing season for CTF/R4R at Mid-Ohio Sports Car Course, August 3 – 5, where he will return to the wheel of the No. 50 eBay Motors/eBay Mobile/ Racing4Research Tiger Racing Ford Mustang Boss 302S.

Pit stop for the No. 39 Children's Tumor Foundation Quicken Loans Chevrolet at Sonoma

At Sonoma, the Foundation hosted nearly 100 NF Heroes and their families for CTF's first ever NASCAR event. Throughout the World Challenge season, families have been able to join Justin and the Tiger Racing team courtesy of the series' sanctioning body, the SCCA, who has donated tickets so that NF families can enjoy the events and support the Foundation. In the first half of the season alone, over 30 new families have been introduced to the Children's Tumor Foundation and the Racing4Research program. "There was a fairly large crowd of some 40,000-plus people at Sonoma," driver and CTF Board Member Daniel Graeff said, "That 6 |

Ryan Newman and the Number 39 Children's Tumor Foundation Chevrolet

national programs

NF Hero Moms enjoying the race World Challenge in Utah with driver Justin Bell

Families from CTF's Utah Chapter gathered at the track as Racing4Research participated in the Pirelli World Challenge on April 28, 2012 as part of the Utah Grand Prix. The Both, Carpenter, Davis, Enman, and Palmer families, along with Dr. Stevenson and family, cheered on Justin Bell in the No. 50 Tiger Racing Ford Mustang. Before the race, the families met with Racing4Research driver Justin Bell and several other World Challenge teams, all of whom support the efforts of the Children’s Tumor Foundation.

The Anderson and Cruz families meeting Nascar driver Ryan Newman

Thomas Nanci and his grandfather Tony.

NF Hero Clara Ellis and her custom made CTF Dress

NF Hero Dakota Anderson enjoying the NASCAR race

More than 100 golfers from the Southern California area participated in the 7th Annual Charity Golf Event and Auction at Bear Creek Golf Club. Hosted by the Nanci family in honor of their grandson Thomas, who lives with NF2, golfers included well-known GRAND-AM and NASCAR race car driver Boris Said, owner of the nearby BMW of Murrieta, who donated the hole-in-one car for the event. Participants capped off the day with a fantastic Italian meal at the Nanci family's restaurant, Anthony's Lounge and Ristorante, where the live auction raffle helped raise more than $40,000 for the Children's Tumor Foundation. NF News • Children’s Tumor Foundation | 7

national programs NF ENDURANCE: iNFinite possibilities New Triathlon Program: The Children’s Tumor Foundation is launching its first ever triathlon program. Participants can sign up for any distance triathlon and receive a personalized training plan, free race registration, and a Children’s Tumor Foundation NF Endurance tri top. Our featured triathlon races for 2013 include the New York City Triathlon, the 70.3 Hawaii Triathlon, and the Ironman Lake Placid.









CHOOSE YOUR OWN EVENT: Run any local race of your choosing. For more information, or to register for an event, please go to

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Ironman Opportunity: Are you interested in doing an Ironman Triathlon? The NF Endurance Team has a fantastic new program that will help you reach this goal, and provides entries into the sold out Ironman Lake Placid race. Please visit for more information about training and various fundraising packages. Corporate Teams: Is your company looking for a rewarding opportunity with which to engage its employees? Become a Children’s Tumor Foundation NF Endurance Corporate Team! Join one of the Foundation's premier events, listed to the left, and receive marketing benefits for your corporation. All employees will receive training plans, nutrition tips, and the opportunity to dedicate their training and fundraising to ending neurofibromatosis. Ways to Get Involved with the NF Endurance Team: • Sign up to run a race with the NF Endurance Team • Volunteer to help on a race weekend • Join the NF Endurance Volunteer Committee

Which races can I participate in on behalf of the NF Endurance Team? You can run ANY race as a part of the NF Endurance Team. Go to the NF Endurance website ( and either choose one of the Premiere Events (listed in the sidebar of this page), or sign up under Choose Your Own Event. With the Choose Your Own Event option, you have the opportunity to participate in any race you choose on behalf of the NF Endurance Team. Every NFE runner will receive a personal fundraising website, a neon singlet to wear on race day, fundraising tips, and access to a CTF team support manager.

How can I volunteer on race weekend to help the NF Endurance Team? NFE is ALWAYS looking for volunteers to help on race weekend. Volunteer duties include participating in a cheer station along the race route, staffing an NF Endurance expo booth, and helping out at the race day tent. If you would like to get involved with an NF Endurance event in your area, please email

How can I join the NF Endurance Volunteer Committee? The NF Endurance Program has started a small volunteer committee to help with various projects throughout the year, and the team would love to have more people get involved! Subcommittee groups include Race Day Experience, PR/Marketing, Mission, and Recruitment. If you would like to join one of these committees, please email The NF Endurance Volunteer Committee “meets” virtually once a month to discuss plans for the NFE Team.

New this year: FREE Virtual Training Interested in running a half or full marathon, or even a triathlon, but not sure how to train for such an event? Beginning with our Premiere Events (see sidebar on page 8), we will now be offering participants online coaching support and a customized training plan based on your experience and/or goals. This service will provide: • Access to an online training plan through TrainingPeaks ( • Individualized training advice from a certified coach. • Access to an online forum for team members to share ideas and thoughts about the event, training, injury prevention, nutrition, gear, etc. A coach will monitor the forum and provide tips and answers to questions that will benefit the entire team. About our coach: Many of you may know Tom Malone as the Foundation’s former Chief Financial Officer. However, Tom has been involved with endurance sports for many years. He has completed multiple Ironman events and was named a 2011 All American Honorable Mention by USA Triathlon. Tom is certified as both a triathlon and cycling coach and has trained endurance athletes of all abilities. He is looking forward to working with the NF Endurance Team.

NF Endurance Race Bibs Want to help spread the word about the NF Endurance Team? For recruitment purposes, NFE has created race bibs that feature one of our NF Heroes and a brief description of the NF Endurance Program. Distributing these race bibs at gyms and running stores in communities across the country would be very helpful. To receive a stack of race bibs, please email

NF News • Children’s Tumor Foundation | 9

national programs UPCOMING NF WALKS 09/08 Beacon, NY 09/09 Denver, CO 09/09 Rochester, NY 09/15 Brunswick, ME 09/15 Biddeford, ME 09/15 West Des Moines, IA 09/15 Milwaukee, WI 09/16 Providence, RI


Step Up to the NF Walk $100 Challenge

The NF Walk Program had a very successful spring and summer with 16 Walks and over $480,000 raised. This would not have been possible without the hard work and dedication of NF Walk committees, sponsors, teams, supporters, and donors. The Foundation is extremely grateful to all who participated in or donated to an NF Walk. As we look forward to the fall season, the NF Walk Program encourages supporters to help build upon the success of this past season and Step Up to the $100 NF Walk Challenge. To help the NF Walk Program reach its 2012 target of one million dollars for NF research, please set a goal of raising $100 between August and December.

How to Raise $100 in Just 7 days

09/23 Addison Oaks, MI Day 1

Donate your own $20 contribution


Day 2

Ask two friends to donate $10


10/13 Dallas/Fort Worth, TX

Day 3

Ask one co-worker to donate $10


Day 4

Ask one neighbor to donate $10


10/14 Central Jersey, NJ

Day 5

Ask two relatives to donate $10


Day 6

Ask one business you frequent for $10


Day 7

Ask a church/temple/school member for $10


10/06 Mechanicsville, VA

11/03 Jupiter, FL 11/03 San Diego, CA 11/17 Las Vegas, NV

For more information: 212.344.6633 ext. 6691

One hundred dollars can easily become two hundred if your company has a MATCHING GIFT PROGRAM. Ask your human resources representative, it can double your donation! Funds raised from NF Walks are carefully allocated to the Foundation’s varied NF research initiatives targeted to rapidly advance progress toward finding effective treatments for NF, while improving life for those with NF today.

Thank you to the top NF Walk Teams of the spring and summer!* Team Name and State


Team Name and State

Team Cure NF, CA


Team Patchy, PA


Jacqueline's Team Walk Away, MN


Kendall's Army


Team Hunt, MN


Kelly's Wings, NC


The Action Chuggers, FL


Sally's Pals, NC


Team Blake, CA


MJRobbins, MA


Trek 4 Tati, PA


Walk Johnnie, NY


Team Ayden, IN


Maren's Courage, MN


Zach Attack, CA


Jesse Pas, CA


Team Izzy, MO


Team Nina, NY


Team CavsNick, MI


Team Jordyn, PA


Inclan Tribe, OK


Team Isla, MA


Team Shaelyn, PA


Team Shamie Joe, CA


The A Team, OH


Team JP, MA


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*Those that raised over $3000.00

Thank you to our 2012 sponsors: How I Organized My First NF Walk by Gwen Coverdale


“When I was asked if I would chair the Philadelphia area’s first NF Walk I was terrified,” says Gwen Coverdale. “But I knew that this event had to happen. There were countless families in the region – mine included – that were depending upon this opportunity to meet others dealing with NF.” Coverdale’s first step was to turn to her friends from the Pennsylvania CTF Chapter. “There were just eight of us and that was our entire committee,” Coverdale explains. “We came up with a list of tasks that had to be completed in the ten week timeframe and divided them up according to our strengths and availability. One day I was writing press releases and the next renting port-a-potties!” According to Coverdale, there were a few people who were critical to helping ensure the Walk’s success. “The NF Walk Team at CTF was very responsive and provided us with the forms and direction we needed to stay on point. The other key person was Karen Sweeney, our local Parks and Recreation Director. She educated me on our Township’s rules and regulations and helped me map out the event.” In all, the Philadelphia, PA NF Walk was extremely successful and set new first-time Walk records for CTF – raising $50,000 and drawing 350 participants. “I have to say that this was one of the most rewarding experiences I have ever had,” says Coverdale. “I had the opportunity to work closely with a group of extremely talented individuals while helping meet the needs of our NF community. I’m already thinking about next year!”

Walk Partner - $2,500

Herbert Simon Family Foundation Found from website recreated PMS

For other first-time NF Walk chairs and committees, Coverdale offers the following tips: • Just do it – Once we made that first phone call or visited that first vendor we got over our fears and found that people really wanted to help. • Depend upon friends – We shared our needs openly and our friends and family came through, donating everything from catering to medical services. • Spread the word – Regular Facebook updates kept the Walk at the forefront of people's minds and generated excitement. • Focus on audience – At times the process can be overwhelming, but every call or email from an excited or grateful participant reminded us why we were doing this. • Share the wealth – Using Dropbox (a free virtual file sharing program) we were able to save and edit documents in one central location. Having everyone updating the same raffle or sponsor list saved time and prevented confusion. • Recruit volunteers early – Get a firm commitment from volunteers early so that you aren’t trying to cover gaps as Walk day approaches. • Express your gratitude – “Thank you” goes a long way when you’re working to establish a signature event. Make sure your walkers, volunteers, donors, and vendors know that their efforts are appreciated. • Relish the moment – The Walk day is a lot like a wedding, lots of work for one brief event. Take the time to enjoy it. NF News • Children’s Tumor Foundation | 11

Meet The Board Steven McKenzie

The 16th Annual NF Camp – Best One Yet! Almost 80 campers from all over the U.S., Canada, and the U.K. gathered for fun and friendship at the 16th annual NF Camp at Camp Kostopulos in Emigration Canyon, Utah. The staff at Camp K put together a terrific schedule, with back-to-back activities, including trips to the Park City Olympic Park for some mountainside fun, the Hogle Zoo to enjoy its expansive natural setting and incredible collection of wild animals, the theatre, a professional soccer match, and the popular water park which is the perfect venue for the hot summer sun. At camp, everyone was challenged by the high ropes course, rock climbing, and the newly-installed crowd favorite zip line, not to mention horseback riding, swimming, and fishing. Camp K offers an endless array of great activities! In the first week, campers were treated to a surprise visit by Utah Jazz star and 2012 NBA Slam Dunk Champion, Jeremy Evans (a.k.a. the Human Pogo Stick), who signed autographs and exchanged stories with attendees. The camp was also honored by a visit from noted NF researcher and physician Dr. Eric Legius of Belgium. Dr. Legius is known for identifying an NF-type disorder which is now called “Legius Syndrome.” Dr. Legius engaged the kids in a lively session of Q&A, and campers and Dr. Legius alike clearly enjoyed the exchange. Campers attending the second week enjoyed their visit with the very popular Dr. Dave Viskochil, whose keen knowledge and sensitivity creates the perfect opportunity for the kids to share their experiences of living with NF, and to build upon their already impressive knowledge of the disorder. The Children’s Tumor Foundation is grateful to the professional and attentive staff at Camp Kostopulos, Drs. Legius and Viskochil, the volunteers, and our generous NF Camp supporters including the Wells Fargo Foundation, the 2011 New England Gala, and the individual donors who care deeply about this very important program. NF Camp 2012 was by all measures successful and memorable because of this generous and loyal support. Make plans to attend NF Camp 2013! Dates will be announced soon and scholarships are available. For more information please visit, or contact Patrice Pancza at

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NF Camp Group Photo

NF Camp Kids

wIth Jeremy Ev

ans of the Utah


Hometown: I grew up in Canfield, Ohio. Current Town: I have lived in Malibu, California since 1998. Education: Wheaton College, B.A. in Economics Work with the Foundation: My wife and I have raised money for the Foundation via the NF Endurance Program since 2001, and were involved in getting the NF Clinic at Children’s Hospital Los Angeles funded in 2005. Our involvement kept growing and I joined the Board in 2008. I am now co-chair of the Board Development Committee and sit on the Audit and Finance Committee. Favorite Memory with the Foundation: It was very gratifying to see the NF Clinic Network come together. Our family went from having to chase doctors all over town, and even out of state, to having one medical institution in which to center our son’s care. Favorite Hobby: Surfing.

Meet The Staff NF Forum 2012: Hope, Help, Heal

Mary Vetting

continued from page 1

began with a meeting of the Chapters Council, a group of volunteer leaders from throughout the United States. Presentations about the Foundation’s national programs followed, and Friday evening concluded with a buffet dinner enjoyed by all. Saturday consisted of numerous presentations from doctors, physicians, clinicians, and researchers. Forum participants learned about the latest in NF research and had the opportunity to ask questions of experts in the field. In addition, Matt Hay, who has NF2 and recently completed an Ironman Triathlon, gave a moving, witty, and inspirational speech about living with neurofibromatosis and the role the Children's Tumor Foundation has played in his life. On Saturday afternoon, the scientists and families came together at a “poster session” where researchers displayed their work and were available to take questions from NF families. The evening continued with a gala awards dinner attended by over 500 people and hosted by Foundation supporters Jim Bob and Laurée Moffett who raised nearly $350,000 for NF research. The awards dinner guests included participants from the NF Forum and the NF Conference, held adjacent to the Forum this year for the first time, and marked the largest ever gathering of the NF community. Sunday morning, Forum attendees participated in the New Orleans, LA NF Walk. With the assistance of professional tour guides, participants traversed the French Quarter of New Orleans and experienced the city's beauty, history, and charm. It was a wonderful way to conclude a successful and enjoyable weekend.

Dr. Duojia Pan of Johns Hopkins University School of Medicine

Stephanie Reeve of Fishers, IN at the NF Forum Awards Dinner

Communications Associate

Hometown: Dearborn, Michigan Current Town: Manhattan, New York Education: University of Michigan (Go Blue!) Work with the Foundation: My primary role is to write and edit many of CTF's communications including acknowledgement letters, direct mail campaigns, informational NF brochures, email blasts, blog posts, social media updates, and website items. I also take photos at Foundation events, and am the Editor of this newsletter. Favorite Memory with the Foundation: Mere days after I was hired, I had the great good fortune of attending the 2011 NF Forum in Minneapolis. It was a wonderful way to begin my career at the Foundation because, through spending a weekend with them, I quickly got to know and like my coworkers, I learned an enormous amount about neurofibromatosis by attending the seminars, and, most importantly, I met and became acquainted with many NF Heroes and their families. With their stories in my mind, and the time we spent together in my heart, I was eager to get back to the office and help in the fight against NF. Favorite Hobbies: I enjoy photography, traveling, yoga, and reading.

At the New Orleans, LA NF Walk

Matt Hay addresses the NF Forum

NF News • Children’s Tumor Foundation | 13

regional news Oklahoma

Tuter, Brooks, and the William’s Brothers hosted a benefit concert in honor of NF Hero Lilly Ann Brooks on Friday, April 20, 2012. With 175 people in attendance, the event raised over $4,000. A FOX television affiliate interviewed band members before the performance, and they helped raise NF awareness by promoting the Children's Tumor Foundation as well as their show.

 California

Every year, the Studio City Chamber of Commerce picks one charity to honor at their annual 4th of July festival. This year they chose the Children's Tumor Foundation. The festival featured a silent auction, pirates, and a dunk tank. For $2.00 per ball, guests were able to test their throwing abilities and try to dunk a pirate or the New York Jets placekicker, Nick Folk. Over 4000 people were at the event, and Mike Klausman, president of CBS Studio Center, helped spread NF awareness by talking about the Foundation at both the main stage and before the fireworks extravaganza which was attended by celebrities including cast members from Modern Family and Al Pacino. More than $5,000 was raised, with additional funds to come. The Studio City Chamber of Commerce pledged to donate a percentage of ticket sales to CTF as well.

 Colorado

B the Difference, the charitable foundation created by the Merritt family in memory of their NF Hero, Brandon, hosted its inaugural event, "B on the Lookout," in Beaver Creek, Colorado on April 1, 2012. The event consisted of a family-oriented scavenger hunt (both on the mountain and in the village), an après party, and a silent auction, filling the day with celebration, education, awareness, and community support. Nearly 100 people participated and over $18,000 was raised for CTF. For more information about B the Difference, please visit


The University of Iowa Hospitals and Clinics (UIHC) and CTF teamed on June 30, 2012 for a very successful and informative NF Symposium held at the Blank Park Zoo in Des Moines, Iowa. Turnout for the Symposium was excellent as adults, children, and families from Iowa and surrounding states were in attendance. The symposium featured presentations from Dr. Pamela Trapane, MD, the Clinical Director for the Neurofibromatosis Clinic at the UIHC; Dr. Nathan Noble, DO, Medical Director at Blank Children’s Hospital Developmental Center; and Jennifer Luria, LMSW, Clinical Social Worker for the Center for Disabilities and Development at UIHC. The topics discussed included Healthcare for Adults, Children’s ADHD/LD and Social Issues, Early Access Issues, IEP’s, and SSI and Waiver Programs for Children with NF1. 14 |

 Texas

Over 20 performers participated in a variety show on April 21, 2012 in Tyler, TX, in honor of NF Hero Meadow Johnson. More than 200 people attended and over $5,000 was raised. Special thanks to Tyler’s Steakhouse for their support of the event.


Inspired by six-year-old Kylie Earle who lives with NF1, four fifth grade students from the Krum Independent School District organized a pajama day fundraiser. For a donation to CTF, Kaylea Wright, Hadley Brooks, Riley Moore, and Cuyler Stephenson, and their friends, were allowed to wear PJ's to school. Their effort raised $1,359 for neurofibromatosis research.

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


On April 16, 2012, the Burke family of Alpharetta, GA hosted the inaugural CureNFwithJack Golf Tournament. Jake and Beth Burke organized the event for their seven-year-old son, Jack, who lives with NF1 and whose local popularity rivals the Mayor of Alpharetta's. Approximately 160 people attended, including Michael Pisciotta of the American Junior Golf Association, and over $50,000 was raised for NF research. Inspired by this wonderful event, the Burke's friend Matt Benson will host the CureNFwithJack Classic in Washington, D.C., presented by Long & Foster Realty, on October 8, 2012.


Held on June 1, 2012, this year's annual Southern Mustache Open golf tournament was, again, a huge success. Organized by Stephen and Leslie Watts and their hardworking committee, in partnership with Kiewit Construction Company, the event featured mustaches of all shapes and sizes, and raised more than $40,000 for NF research.

North Carolina

On June 3, 2012, Michael and Kelly Peterson, and their two-year-old daughter Natalie who has neurofibromatosis, participated in the Los Angeles, CA NF Walk. On the same day, Michael's parents, Carolyn and Charles, hosted a garden party "fun raiser" called New Bern Cares to Cure NF in the backyard of their home in New Bern, NC. Together they raised $50,000 for NF research.


On June 24, 2012, the Cleveland's Got Sole Sneaker Showcase raised over $11,000 for the Children's Tumor Foundation. Huge thanks to the Petras family for volunteering at this event and representing the Foundation, and to the Cleveland's Got Sole organizers Kevin Kramer and Andrew Watts.


On June 27, 2012, Mia Rashkind, a five-year-old girl from Norfolk, VA who is battling neurofibromatosis, had the opportunity to meet actor Tom Hanks on the set of his new movie Captain Phillips. Tom Hanks, as well as actors Max Martini and Yul Vazquez, took a break from filming to meet and spend time with Mia and her family.


Molly's second annual "Spring for a Cure" was held in Newburyport, MA on June 2, 2012. The event featured a carnival theme complete with games, prizes, food, a penny candy store, music, more than 50 donated raffle and silent auction items, a visit from Elmo, and a much loved live animal show by Curious Creatures. Despite a dreary rainy day, over $5,400 was raised. In addition, one of the event's sponsors, Axcelis Technologies, donated $3,400. To learn more please visit

The Children's Tumor Foundation is a 501(c)(3) not-for-profit organization 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, Creative Katherine Wu,

Foundation Staff John W. Risner, President Research Annette Bakker, PhD, Chief Scientific Officer Min Yi Wong, Research Program Director Daniel Aiese, Research Program Assistant Development and Volunteer Relations Rick Lepkowski, Chief Development Officer John Heropoulos, Senior Vice President Traceann Adams, NF Walk Program Director Jessica Beckerman, NF Walk Coordinator Chrissie Connors, NF Walk Coordinator Jill Beck, Racing4Research Program Director Sarah Coulam, NF Endurance Program Director Emily Phillips, NF Endurance Manager, Logistics/Marketing Lori Weitzel, NF Endurance Team Support Manager Bob Skold, NF Endurance Team Development Patrice Pancza, Program Director, Grants and Foundations Carolyn Castellano, Project Director, Major Events Kelly Mills, Volunteer Relations Regional Manager Julie Pantoliano, Volunteer Relations Associate Garrett Gleeson, Program Director Amita Patel, Development Officer Chad Leathers, Program Director Kristine Poirer, Program Coordinator Danielle Meyer, Tech Support, National Programs Public Education and Patient Advocacy Simon Vukelj, Communications Director Mary Vetting, Communications Associate Katherine Wu, Design Associate Finance and Administration Judi Swartout, 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 | 15

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

Children’s Tumor Foundation

Annual Benefit Dinner Thursday, November 1, 2012 Cipriani 55 Wall Street New York City H o no r e e s

Richard A. Horvitz

Honorary Director and former Chairman, Children’s Tumor Foundation Board of Directors Chairman, Moreland Management Company

save the date

a night to celebrate our stars


Kaleb Yohay, MD

Comprehensive Neurofibromatosis Clinic at the New York-Presbyterian Komansky Center for Children’s Health


Drew Leathers

2012 Children’s Tumor Foundation Ambassador For more information, please contact Carolyn Castellano at 212-344-6633 ext. 8549 or 16 |

friends donors


Original illustration by Izzy Botko, then 6 years old, child with NF1

Summer 2012 Newsletter