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NF NEWS V ol u m e I I I , 2013

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

banking on a cure

NF-related tissue for storage and research purposes.

children’s tumor foundation creates the nf biobank A longtime dream of the Children’s Tumor Foundation (CTF) became reality this summer as the first neurofibromatosis (NF) tissue samples were deposited in the NF Biobank. The 94-degree heat on the day of the first sample collection didn’t matter—the samples were flash-frozen in liquid nitrogen and kept on dry ice or stored in a preservative for their trip from an outpatient surgery center in New York City to a biorepository in Frederick, MD. There they will be carefully maintained in preservatives or stored at temperatures as low as -150 degrees Celsius, ready to ship out to qualified researchers. These first samples came from a patient who was undergoing removal of multiple dermal neurofibromas (skin tumors) who agreed to donate this tissue to research. CTF will continue to collect tissue from up to 50 more patients in the coming months. The surgeon was Dr. Hubert Weinberg of New

York City, who offers NF1 patients removal of large numbers of skin tumors at one time, under general anesthesia. Dr. Weinberg realized the value of this tissue, which would otherwise be discarded, to the NF community in shedding new light on the processes at work in neurofibromatosis. He worked with CTF to develop an experimental protocol, which received Institutional Review Board (IRB) approval in May 2013. Development of the protocol could not have been completed without the guidance of CTF consultant Dr. Mindell Seidlin, who spent countless hours ensuring that all the details were well thought out as well as researching an appropriate storage facility. The protocol and consent form that she helped develop was approved on its first submission. While this first protocol is specific to dermal neurofibromas, it will serve as a basis for creating other protocols that can eventually be applied to the collection of other types of

The initial use of the dermal tissue will be in two pathology research laboratories. The tumors will be analyzed in a systematic way to determine which kinds of cells are present and how these cells are organized.

WHAT IS A BIOBANK A biobank is an organized collection of human biological material and associated information stored indefinitely under stable conditions for research purposes. The key features that make a biobank valuable are: • Giving researchers convenient access to data from large numbers of individuals with the same condition • Getting the most out of donated tissue by distributing it to multiple researchers for multiple purposes • Allowing the same tissue to be looked at in many different ways

“picture a world without NF” photo contest winner announced! Many thanks to everyone who submitted a photo to the Children’s Tumor Foundation’s “Picture a World Without NF” contest, part of the neurofibromatosis awareness month festivities. During May, the

Foundation asked the NF community to take a photo with any item bearing the CTF or NF logo, at a famous landmark or in your neighborhood, with friends and family or solo, to show that no matter where you are, who you are with, or what you are doing, you’re always fighting for a world without NF. All submissions can be viewed in an album on CTF’s Facebook page ( Now, without further ado, the winner is Nickie Cole of Parker, CO. Nickie says, “My submission was taken at Hanger Prosthetic’s All Ages Amputee and Mobility Clinic at Colorado University. My youngest son, Owen, now three, lost his leg at ten months old due to severe pseudoarthosis. I captured this profound moment when he noticed all the other amputees and identified with them. He saw them running and he wanted to run too. He is so brave, and doesn’t let anything stop him. He is my hero.”

Children’s Tumor Foundation

board of directors

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

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childrenstmrfdn @childrenstumor @childrenstumor children’s-tumor-foundation

Letter from the president A Note From Children’s Tumor Foundation President, John W. Risner

On November 3, 1984, Dr. Allan Rubenstein, one of our founders and currently the Director of Medical Affairs, Emeritus, and Dr. Judith Bader organized a satellite meeting on neurofibromatosis in conjunction with the annual meeting of the American Society of Human Genetics. Little was known about NF at the time, but the success of this seminar highlighted for the Foundation the importance of holding regular research meetings through which clinicians and scientists could share ideas and identify areas of collaboration. Dr. Rubenstein’s and Dr. Bader’s gathering led to the organization, in 1992, of the first “National Neurofibromatosis Foundation International Consortium for the Molecular Biology of NF1 and NF2.” While the name was descriptive, thankfully it was shortened to “NF Conference” in 2006. Historically, as the original name reflected, this was a meeting of researchers. Along with this name change, an important addition took place. Due to the creation of the NF Clinical Trials Consortium in 2005, the expansion of drug discovery, and the demand from physicians, we began adding translational and clinical presentations to the agenda. The NF Conference’s comprehensive approach, open communication style, and opportunities for collaboration have turned this event into the preeminent global meeting for neurofibromatosis researchers and clinicians. This year, over 300 attendees from ten different countries joined us in Monterey, CA. Also of note, representatives from 15 companies joined us this year, up from two just five years ago. There are many needs in NF research, but the continued support of this conference is one of the most important aspects of the work done by the Foundation’s Chief Scientific Officer, Dr. Annette Baker, and her team. So many of the achievements made and partnerships formed in the field of neurofibromatosis have their genesis in the NF Conference. The chance meeting in the hallway, the challenging questions during a presentation, the wacky idea that surfaces after dinner – I have seen many examples of each of these lead to key advancements. The highlights of the NF Conference and our recent Young Investigator Award (YIA) recipients are both featured in this issue. While we have expanded our research program significantly over the years, the YIA remains our cornerstone grant. This award plays a key role in funding novel research in NF, as well as attracting today’s best and brightest young scientists toward a career in neurofibromatosis. Today’s young researchers are tomorrow’s thought leaders, and it will be exciting to follow the varied research that this program supports. Our job at the Foundation is to develop the grant programs, industry outreach, and funding opportunities that speed this work and increase its efficiency. Thank you for your support, it is integral to our success. Sincerely Yours,

John W. Risner

research news

2013 Young Investigator Award Recipients

The Children’s Tumor Foundation is pleased to announce the funding of nine Young Investigator Awards (YIA) for 2013. YIA recipients focus on using animal models and cell and tissue cultures to advance understanding of the biology of NF1, NF2, and schwannomatosis, which is the first step toward better treatments for neurofibromatosis.The 2013 YIA recipients include seven post-doctoral and two pre-doctoral awardees.

2013 Postdoctoral Awardees Lu Zhou, Peninsula School of Medicine and Dentistry, UK KSR1 as a Potential Therapeutic Target for Both NF1 and NF2 NF1 patients can develop plexiform neurofibromas (benign tumors that grow along nerves) which can become malignant peripheral nerve sheath tumors (MPNST) in 10% of cases. NF2 patients are likely to develop tumors of the Schwann cells called schwannomas, which lead to significant medical problems. Currently, there is no approved drug therapy for these complications of NF1 and NF2. This project will use cell cultures to explore the tumor-suppressing activity of Kinase Suppressor of Ras 1 (KSR1) as a new approach for the treatment of both NF1 and NF2.

Su Ting, University of Chicago Dissecting Merlin-mediated Regulation of the Hippo Growth Control Pathway Using FRET-based Biosensors Loss of the NF2 tumor suppressor protein Merlin leads to tumor formation in humans and mice, and tissue overgrowth in Drosophila (fruitflies). Merlin is thought to regulate the activity of the Hippo growth control pathway that controls organ size and tissue stability. Due to a lack of laboratory methods for studying Hippo pathway kinase activity, we do not know exactly how Merlin regulates the Hippo pathway. The researchers plan to develop optical biosensors that measure the activity of Hippo pathway kinases with high resolution. They will use these to explore the role of Merlin in regulating the Hippo pathway during normal development, and in suppressing tumor formation in humans.

Kairong Li, University of Alabama Characterizing Novel NF1 Mouse Models and Developing New Therapeutic Interventions The approach of using drugs that interact with a mutated gene or its gene product, with the goal of restoring gene function, has proved feasible in genetic disorders such as cystic fibrosis and Duchenne muscular dystrophy. This project will develop new mouse models mimicking human NF1 mutations to enable preclinical testing of such gene or protein-targeted NF1 therapeutics. It will focus on mice with mutations like those in NF1 patients in which there is a premature “stop signal.” This type of mutation occurs in approximately 20% of people with NF1. The researchers will study mice with premature stop mutations, and test the ability of a group of drugs called “nonsense suppressors” to allow normal protein to be produced in these mice.

Christine Chiasson MacKenzie, Harvard University, Massachusetts General Hospital Mechanical Organization of the Cell Cortex by the Tumor Suppressor NF2/Merlin This researcher’s group has recently discovered that the protein that is missing in NF2, Merlin, helps to organize the physical properties of the cell by restricting the function of the ERM family of proteins. Based on these findings, the researcher proposes a novel and unifying hypothesis: that the multiple features of NF2 are related to a failure of cells to appropriately respond to mechanical stimuli. She will use innovative bioengineering approaches to manipulate the mechanical environment experienced by cells and investigate how mechanical stimuli impact the activity of known Merlin-regulated signaling pathways in the presence or absence of Merlin. These studies will set the stage for future efforts to match the appropriate therapeutic strategy to a specific tumor type.

William Guerrant, The Scripps Research Institute, Florida Small Molecule Inhibition of the Hippo-YAP Pathway as a Therapeutic Strategy in NF2 Currently, treatment options for NF2 are scarce. There is a pressing need for NF2 drugs. The Hippo-Yap pathway is involved in NF2 and has recently been shown to interact with many other important pathways that can cause cancer. It has therefore become an important new target for cancer researchers. The project will screen a 640,000 plus “library” of chemical compounds to identify inhibitors of the pro-growth signaling Hippo-Yap pathway and test the most promising inhibitors of human NF2 tumors in mouse models, with the goal of developing validated drugs for NF2 treatment. 3

research news Shuning He, Harvard University, Dana-Farber Cancer Institute In Vivo Analysis of the NF1 Tumor Suppressor in Neurofibromatosis It is known that part of the NF1 protein downregulates the function of another protein, called RAS, which can promote tumor formation when it is expressed at high levels. However, the functions of other regions of the NF1 protein have yet to be discovered. This project will study new functions of NF1 and how NF1 is involved in neurofibromatosis formation using a zebrafish model. When the functions of NF1 proteins are inhibited in zebrafish, they develop abnormally with defects that mirror the human disorder. The zebrafish model promises to be meaningful for the study of NF1 in humans and the development of improved therapies for patients with NF1.

2013 Predoctoral Awardees Matthew Karolak, Vanderbilt University FGFR1 and Neurofibromin Interactions During Endochondral Bone Formation Approximately 30% of NF1 patients will have some type of abnormality related to skeletal development, bone remodeling, and bone fracture repair. Following fracture, these NF1 patients typically have healing abnormalities. In some cases, they are required to undergo multiple surgeries to achieve fracture healing. Frequently these attempts are still unsuccessful, may require limb amputation, and are associated with high morbidity. The molecular mechanisms underlying many of the skeletal aspects of NF1 remain unknown, and largely untreatable with drugs. This project will test the hypothesis that FGF Receptor 1 signaling in chondrocytes (the bone cells contributing to bone elongation during growth and the first steps of bone repair following fracture) is under the control of neurofibromin (the protein mutated in NF1 patients). If correct, this will identify a novel target against which pharmacological drugs targeting FGFR1 could be used to promote proper fracture healing in NF1 patients. In this study, tissue culture experiments will examine which FGFR1 signaling events are regulated by neurofibromin. A second part of this study will test whether inhibiting FGFR1 in a mouse model promotes bone healing. It will use a newly developed method to deliver an FGFR1 inhibitor at the fracture site in a controlled (slow release) and local manner. Overall, this study will determine the feasibility of the approach of blocking FGFR1 during the early phases of bone healing in NF1 patients in order to promote proper fracture healing and stable bone union following fracture. 4

Wei Mo, University of Texas Southwestern Medical Center MPNST, a Disease of the Stem Cell? Recently, the concept of cancer stem cells has arisen in multiple professional journals in the biomedical field and has been widely discussed as an important topic of public health. The traditional tumor growth model holds that every cancer cell has unlimited dividing and metastasis potential. However, it is difficult to explain tumor relapse after classical anti-tumor treatments such as chemo- and radiotherapies because the majority of the highly proliferative cancer cells are killed upon treatment. The cancer stem cell hypothesis can better explain tumor recurrence following treatment. Cancer stem cells (CSCs) represent a small population in cancers with self-renewal capability and maintain tumor heterogeneity. Malignant peripheral nerve sheath tumors (MPNSTs) are highly aggressive and lethal tumors that develop in 2-5% of NF1 patients. There is now opportunity to develop innovative and novel therapies for these tumors, if the CSC model is applicable to MPNST growth. The identification of CSCs in MPNSTs would suggest that a more aggressive treatment plan targeting the CSCs would be effective, and could lead to improved treatments for NF1 patients who develop MPNSTs.

Christine Kivlin, University of Texas, MD Anderson Cancer Center PARP Inhibitors for the Treatment of NF1-associated MPNST A malignant peripheral nerve sheath tumor (MPNST) is the most aggressive consequence of NF1. Currently, the only treatment for MPNST is surgery, if feasible. Additionally, about 50% of the patients develop metastases, which have a poor survival rate (20-50% five-year survival rate). This project will evaluate the use of Poly ADP Ribose Polymerases, or PARP, inhibitors to treat MPNSTs. PARP inhibitors are proteins that play an essential role in the repair of DNA damage. Recent evidence suggests that cancers have specific defects in DNA repair pathways that may predispose for sensitivity to various classes of cytotoxic agents, such as PARP inhibitors. Preliminary data from this laboratory strongly suggest that an MPNST is sensitive to the effects of AZD2281, a PARP inhibitor. The goal of this project is to further evaluate the effects of PARP inhibition on MPNSTs in cell lines and animal models. It also aims to identify why MPNST cells are sensitive to PARP inhibition. Understanding the mechanisms responsible for sensitivity would enhance our ability to identify MPNST patients that will most benefit from treatment with PARP inhibitors.

Highlights from the 2013 NF Conference

Dr. Scott Plotkin

This year’s NF conference, the premier annual event in the neurofibromatosis (NF) research and clinical calendar, was held June 8-11 in Monterey, CA. Over 300 people attended including 15 different representatives from biotech and pharmaceutical companies, the largest participation of industry to date. Many attendees praised this year’s conference as one of the best NF meetings in years, due in large part to the meticulous work of the conference co-chairs, Dr. Scott Plotkin from the Harvard Medical School and Dr. Alison Lloyd from University College London. Many new initiatives were introduced this year such as the Education Symposium Satellite Meeting. This mini symposium was an opportunity for clinicians to share the latest techniques and best practices in diagnosing, monitoring, managing, and operating on plexiform neurofibromas and vestibular schwannomas. The large number of attendees suggested a broad interest in improving clinical knowledge about these conditions, and this sort of symposium could improve NF care worldwide. Also new to this year’s NF Conference were the early morning Sunrise Sessions. These events were a venue for experts to express their views on important clinical and research topics in a relaxed atmosphere. In these sessions, NF “veterans” shared their years of experience in the field and identified unanswered questions for the future.

Dr. Alison Lloyd

Dr. William Sellers

In addition, a special session entitled Industry, Government, and Academics presented a complete view of opportunities and regulations in the NF field from different angles. It highlighted resources available for clinical researchers within government, demonstrated how one important company, Novartis, was considering drug discovery and development in rare diseases such as neurofibromatosis, and, most importantly, raised awareness of NF clinical trials in the Food and Drug Administration (FDA), the Cancer Therapy Evaluation Program (CTEP), and in industry. This session began with an inspiring keynote presentation by Dr. William Sellers, Director of Oncology Research at Novartis, addressing how novel approaches in drug discovery can result in an increased understanding of drug candidates and faster and better-informed therapies.

Dr. Salvatore LaRosa

Dr. Salvatore La Rosa, Research and Development Director at the Children’s Tumor Foundation (CTF), also spoke at this session and gave an informative overview of the discovery initiatives at CTF, in particular the new Neurofibromatosis Therapeutic Consortium (NFTC). He also highlighted the Foundation’s commitment to providing NF researchers with the “tools” they need through CTF’s Drug Discovery Initiative (DDI) Toolbox.



Dr. Roger Packer

from the 2013 NF Conference

Dr. Roger Packer from the Children’s National Medical Center presented an update on the efforts of the Congressionally Directed Medical Research Program-Neurofibromatosis Research Program (CDMRP-NFRP) and the progress of NF clinical trials. He enthusiastically reported on three new clinical trials arising directly from the work of the NF Preclinical Consortium (NFPC): Cabozantinib for plexiforms, Ganetespib and Sirolimus for MPNSTs, and PD0325901 for plexiforms. These trials either began this year or are in the process of being approved for recruitment. Dr. Packer’s speech informed the conference attendees on the increasing depth of clinical trial study in NF, which is the result of investment in neurofibromatosis research.

Dr. Helen Chen

Dr. Helen Chen from the National Cancer Institute spoke about work sponsored by CTEP and opportunities to learn about drugs, drug combinations, and clinical trials from previous studies conducted in different areas of cancer research. Dr. Gregory Reaman of the FDA closed out the conference with an informative presentation explaining the requirements needed by regulators to make a new treatment available to patients. Dr. Gregory Reaman

NF Conference 2013 Keynote Speakers < William Sellers, MD, Vice President/Global Head of Oncology, Novartis – “The Genetic Basis for Cancer Therapeutics” < Gregory Sorensen, MD, Chief Executive Officer, Siemens Healthcare North America – “Innovation in Imaging Techniques” < David Kwiatkowski, MD, PhD, Brigham and Women’s Hospital / Harvard Medical School / Dana Farber Cancer Institute / Broad Institute “Tuberous Sclerosis Complex: Recent Translational Advances for a Neurocutaneous Disorder Related to NF1 and NF2” < Frank McCormick, PhD, University of California, San Francisco – “New Approaches for Targeting Ras”


“ask me anything” Webinar with John Risner September 10, 2013 Please send your questions to and register at

national programs

Racing4Research Continues to “Fuel the Cure!” NF families with Daniel Graeff

The Children’s Tumor Foundation’s Racing4Research program has continued to “Fuel the Cure” for NF across the country, including stops with the Pirelli World Challenge in Lime Rock, Connecticut and the NASCAR K&N East Series in Langley, Virginia. Families had the opportunity meet the drivers, check out the CTF race cars, and cheer on the teams as they help to raise funds for research and awareness of neurofibromatosis. A few families also met with driver/team owner/actor Patrick Dempsey - a great supporter of the Foundation who is always willing to spend time with our NF Heroes.

Two of the teams representing CTF continue to be in the hunt for the championship with James Sofronas and the No. 14 Children’s Tumor Foundation / GMG Racing Audi R8 leading the GT class in the Pirelli World Challenge, and Ryan Eversley in the No. 75 Children’s Tumor Foundation / Compass 360 Racing Honda leading the ST class in the Grand-Am Continental Tire Series Challenge. Go Ryan!! Go James!! Please visit or see our Facebook page, , to find out which track we’ll be at next --- and join us!

Patrick Dempsey

James Sofronas

Ryan Eversley


national programs Finn

Our Chicago Rockâ&#x20AC;&#x2122;nâ&#x20AC;&#x2122;Roll Half team raced 13.1 miles in July and raised over $25,000 to help end NF. Make sure to check out race photos on Flickr! The Chicago NFE Volunteer Committee is busy planning for the upcoming Chicago Triathlon in August and the Chicago Marathon in October!

Ryan Wachter

DEC 8 2013

Want to make your state


Visit to find out how you can bring an NF Endurance team to a race near you, and you may be eligible to attend our upcoming Volunteer Summit in Chicago October 10-13th! 8

OCT 19 2013 |

Our first IRONMAN team competed in the 15th IRONMAN Lake Placid event in July, with nine athletes raising over $60,000 for CTF. Visit our Flickr and YouTube pages to view their 140.6 mile journey!

OCT 6 2013

Joe Micheels

PHILLY 1/2 MARATHON September 15, 2013 HAMPTONS MARATHON September 28, 2013 AKRON MARATHON September 28, 2013 NYC MARATHON November 3, 2013 PHILLY MARATHON November 17, 2013 Quinn Fernandez ďŹ&#x201A;

You can avoid the rush and secure your spot NOW for IRONMAN Florida 2014! CTF is the Official Charity for the 2014 race and the beneficiary for the IRONKIDS race in both 2013 and 2014. Visit to learn more or sign up!



national programs

Take the 100% Challenge! The NF Walk team’s goal is to have 100% of participants at each NF Walk event raise $100 towards ending NF. If we succeed, we will have raised $1 million by the end of the year! Start today by visiting and registering for an NF Walk event in your area!

upcoming NF Walks September 8, 2013 Denver, CO

September 28, 2013 Milwaukee, WI

October 5, 2013 New Orleans, LA

September 14, 2013 St. Louis, MO

September 28, 2013 Bowling Green, KY

October 6, 2013 Atlanta, GA * Super Stroll also

September 14, 2013 Jacksonville, FL

September 28, 2013 Putnam, CT

September 14, 2013 Brunswick, ME

September 29, 2013 Rochester, NY

September 14, 2013 Biddeford, ME

September 29, 2013 Central Jersey, NJ

September 21, 2013 Des Moines, IA

September 29, 2013 Minneapolis, MN

September 22, 2013 Addison Oaks, MI *5K and 10K also

October 5, 2013 Dallas Fort Worth, TX

San Jose NF Walk

October 5, 2013 Mechanicsville, VA

October 20, 2013 Los Angeles, CA October 26, 2013 Westchester, NY November 2, 2013 Jupiter, FL November 2, 2013 San Diego, CA

Alison Désir

“Walk to 5K”  Nine Week Training Program Are you looking for an opportunity to get fit, for a training run in your area, or just a good cause to support? Join the “NF Walk to 5K” program! Certified Coach and CTF Volunteer Relations Coordinator Alison Désir will take you from walking to running a 5K with a customized, nine-week training program. For more information about including a 5K run in your NF Walk event, or joining the “NF Walk to 5K” program, please contact

Chicago NF Walk 10 |

Take a Super Stroll Against NF! A Super Stroll is a walkathon event, with or without a 5K run, in which people of all ages can express themselves through costumes and superhero personas. This is a fun opportunity for communities, families, businesses, and individuals to get involved in raising awareness and funds for NF. All participants will receive a cape when they register for a Super Stroll. For more information please email

Philadelphia NF Walk and 5K

Greensboro, NC NF Walk

Cincinnati NF Walk

Portland NF Walk


Cupid’s Undie Run Expands to 31 Cities! Cupid’s Undie Run, a worldwide fundraiser for the Children’s Tumor Foundation, is proud to announce the 13 new cities that will host a race in 2014. In addition to the previous 18 cities that helped raise over $1.3 million for the Foundation in 2013, the new cities listed below will help Cupid achieve its goal of raising $4 million for CTF in 2014.

New Cities:

Returning cities:

• Baltimore, MD • Brisbane, Australia • Boise, ID • Cambridge, MA • Charleston, SC • Houston, TX • Kansas City, KS • Louisville, KY • Mason City, IA • Omaha, NE • Pittsburgh, PA • Raleigh, NC • Silicon Valley, CA

• Atlanta, GA • Austin, TX • Chicago, IL • Cincinnati, OH • Cleveland, OH • Denver, CO • Detroit, MI • Los Angeles, CA • Minneapolis, MN • Nashville, TN • New York, NY • Orlando, FL

• Philadelphia, PA • San Francisco, CA • Seattle, WA • St. Louis, MO • Syndey, Australia • Washington, DC

If you live or have connections in any of these cities, feel free to drop Cupid a line at Volunteers, spectators, and participants are all welcome! Cupid also runs an “NF Hero” program that profiles local NF Heroes on CUR’s website and social media to share the stories within the amazing NF community. If you would like to be included in this program, please email for more information.

An article by Peter Sagal of NPR’s “Wait, Wait Don’t Tell Me” about Cupid’s Undie Run was recently published in the August issue of Runner’s World.

Friedrich von Recklinghausen Award Pictured (L-R) are Dr. Annette Bakker of the Children’s Tumor Foundation, Dr. Brigitte Widemann of the National Cancer Institute, and Dr. Kevin Shannon from the University of California - San Francisco, at this year’s NF Conference in Monterey, CA. Dr. Widemann is the recipient of the 2013 Friedrich von Recklinghausen Award for her significant contributions to neurofibromatosis research. 12

meet the staff

meet the board

Marissa Moscatello

Jill Markland, Chapter Council President

Hometown: New City, NY

Hometown: Lawrenceburg, IN

Current Town: New City, NY

Current Town: Lawrenceburg, IN but I work in Cincinnati OH

Education: BA in History from Pace University Work with the Foundation: I am the Volunteer Relations Coordinator for the Midwestern United States. I work with volunteers in a variety of ways to help raise funds for NF research as well as awareness of neurofibromatosis. Favorite Experience with the Foundation: I really enjoyed meeting so many of our NF families at the Daytona Racing4Research event in January. Just two weeks after my start at the Foundation, it was the perfect way to get to know everyone and learn their incredible stories. Favorite Hobby: Photography

Education: I attended Ball State University but only for a short time. I was hired at Procter & Gamble at a young age. Work with the Foundation: I foster and encourage grass roots efforts for CTF. I like to think of myself as someone that works side-by-side with parents of diagnosed children and affected adults. I love to help plan fundraisers and sometimes just lend an ear to a newly diagnosed family. Favorite Experience with the Foundation: My work with the Chapter Council has been very rewarding. I get to interact with so many great people that truly want to make a difference. I often call our face-to-face Chapter Council get-togethers my power meetings; it’s where I re-charge my batteries. It energizes me to see so many fantastic people focusing all of their talents toward one goal: Finding a cure for neurofibromatosis. They are motivated solely by loved ones with NF and it’s beautiful to be a member of their community. I am honored to have a chance to be their leader and represent them on the Board. Favorite Hobby: My favorite hobby is drag racing. I have an altered, four-wheel-drive, off road dragster that produces up to 850 horsepower. It’s quite a way to blow off steam! I have gone 81 mph in 3.94 seconds on a 300 foot track, in the dirt. It runs on alcohol and has a 383 small block Chevrolet engine in it. I race with my husband, Rodney. Our son Blake has a junior dragster of his own, and our son Jesse is our pit crew. It’s a family sport that I have participated in with my own parents since I was a very small child.

Remembrance of Doris Schnuck Doris Schnuck of Clayton, MO, a successful businesswoman, loving mother, and devoted wife, passed away on May 11, 2013 at age 88. Mrs. Schnuck was a Member of the Children’s Tumor Foundation’s Board of Directors for over ten years. Doris and her husband Donald (1922-1991) generously endowed the Donald O. Schnuck Family Professor of Neurology Chair at the Washington University in St. Louis School of Medicine, held by Dr. David H. Gutmann, MD, PhD. The Schnucks also helped turn a corner grocery store in north St. Louis into the area’s

leading supermarket chain. Today, Schnucks operates 100 stores in five states — Missouri, Illinois, Indiana, Wisconsin, and Iowa — with 14,800 employees. Their six children now run the company. Mrs. Schnuck supported the St. Louis Children’s Hospital, the Children’s Tumor Foundation, the St. Louis Zoo, and the Donald Danforth Plant Science Center. The Children’s Garden at the Missouri Botanical Garden is named for her.

choral performances, and school assemblies.

Her family describes her as a woman of grace who attended all of her children’s sporting events, plays, Scout activities,

The Foundation is grateful for Mrs. Schnuck’s many years of service and shares its deepest sympathies with her family and friends. 13

regional news

Find Your Local Children’s Tumor Foundation Chapter The Foundation has a presence in nearly all 50 states and facilitates local patient support groups, medical symposia, and fundraising events. Learn more about the Children’s Tumor Foundation Chapter in your area by visiting .

north carolina For the second time, the Peterson family’s “New Bern Cares to Cure NF” event exceeded all expectations. Hundreds of people attended and every cent raised benefitted the Children’s Tumor Foundation. Like last year, Michael and Kelly Peterson pledged to match all donations up to $20,000 in honor of their NF Hero daughter, Natalie.

michigan Sheila Cohoon, mother of NF Hero Nic, and family hosted the Douglas R. Bouford Memorial Golf Outing to Benefit the Children’s Tumor Foundation on July 20th in Macomb, MI. The event honors the memory of Sheila’s brother, Douglas Bouford, who died in a snowmobile accident in 2012 but continues to help raise funds for NF in spirit.

OKLAHOMA The annual Tulsa NF Walk took place on May 18th at LaFortune Park and raised over $33,000.

alaska CTF’s Alaska Chapter hosted an NF Symposium on May 19th at Providence Alaska Medical Center in Anchorage, AK. Approximately 33 people attended including children.

utah On June 27th, the Utah Chapter promoted the Salt Lake City NF Walk on Radio Disney in Salt Lake City.

massachusetts california The Robinson family hosted their annual Kickoff/Kids Art Workshop fundraiser in Toluca Lake, CA. The attendees created art for the live auction portion of the Los Angeles NF Walk which will be held on October 20th at CBS Studio Center.

On June 15th, over 200 people gathered at Carson Beach in South Boston for the fifth annual Boston NF Walk which raised more than $40,000 for NF research. The weather was beautiful and everyone enjoyed making new friends, seeing old ones, and even meeting SpongeBob SquarePants.

rhode island The Ocean State NF Walk, which took place on May 19th, had over 65 participants and raised more than $15,000. Special thanks to organizers Walt and Priscilla Steenbergen for their hard work and dedication.

massachusetts The Second Annual Daylily Sale took place in Carver, MA on June 13th. Over 300 daylilies were sold and more than $1,700 was raised for the Children’s Tumor Foundation.

Kelvin Ramer raised NF awareness at the San Diego County Fair in July by putting a Children’s Tumor Foundation flag on his monster truck “Time Flys.”

Mary Vetting, Foundation Staff

The sixth annual New York City Poker Tournament to Benefit CTF took place on June 6th. Congratulations to Joe Anzalone for playing the winning hand! A special thank you to the Poker Tournament Committee, spearheaded by CTF Board Member Dan Altman, as well as table sponsors Canaccord Genuity, Flaster/Greenberg PC, and Scott and Robin Gottlieb. This year’s tournament had the biggest turnout in CTF history and garnered over $100,000 for NF research.

CALIFORNIA CTF was the featured charity for the 15th Annual Fireworks Festival at CBS Studio Center. Families came from all over for this amazing event which included a silent auction and a pirate dunk tank.

UTAH The Utah Chapter’s annual NF Women’s Day Gathering was held on May 18th in Bountiful, UT at the home of Andrea Davis, and was enjoyed by all.

The Children's Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. NF affects one in every 3,000 people, more than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined. The Children’s Tumor Foundation funds critical research into neurofibromatosis. In addition to benefiting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community. For more information, please visit Editor

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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).

John W. Risner, President Research Annette Bakker, PhD, Chief Scientific Officer Salvatore La Rosa, PhD, Director of Research and Development Pamela Knight, Clinical Research Manager Daniel Aiese, Research Program Assistant Development and Volunteer Relations 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 Lauren Fritz, NF Endurance Manager, Chicago Alissa Marks, NF Endurance Manager, Marketing Angela Auzston, NF Endurance Community & Youth Events Mgr Chad Leathers, Program Director, Cupid’s Undie Run Sarah Morley, Special Event Manager Patrice Pancza, Program Director, Grants and Foundations Garrett Gleeson, Program Director, Major Gifts Carolyn Castellano, Project Director, Major Events Kelly Mills, Volunteer Relations Regional Manager Julie Pantoliano, Volunteer Relations Coordinator Alison Désir, Volunteer Relations Coordinator Marissa Moscatello, Volunteer Relations Coordinator Kristine Poirier, Volunteer Relations Coordinator

Public Education and Patient Advocacy Simon Vukelj, Communications Director Mary Vetting, Communications Associate Finance and Administration Judi Swartout, Chief Financial Officer Sarah Bourne, Accountant Monique Boucher, Database Supervisor Mohamed Amin, Database Assistant Rosa Amelia Perez, Project Administrator Sarah Rosenberg, Program Assistant Danielle Meyer, Tech Support, National Programs

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Gala Events

The Black & Blues Ball Saturday, October 19, 2013 Boston Marriott Cambridge The BeNeFit: A Celebration to End NF Saturday, October 26, 2013 COBO Center, Detroit

join the nf registry

Annual Benefit Gala Thursday, November 7, 2013 Cipriani Wall Street New York City

All upcoming NF Walk events will have computers onsite so that participants can join the NF Registry. For more information please visit

Children's Tumor Foundation Newsletter, Volume III 2013  
Children's Tumor Foundation Newsletter, Volume III 2013