NF NEWS FA L L 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
Hurricane Sandy Delays Events, But Doesn’t Dampen Spirits In late October, Children’s Tumor Foundation volunteers and staff hoped for the best and prepared for the worst as Hurricane Sandy bore down on the New York tri-state area. With the annual CTF Gala taking place November 1st and a strong NF Endurance Team presence at the New York City Marathon on November 4th, preparations and contingency plans continued in the hopes that both events would take place as planned. However, Hurricane Sandy, as we now know, proved more forceful than expected and caused widespread damage to the NYC area, including loss of life. Closer to home, many Children’s Tumor Foundation volunteers and staff found themselves without power and heat, and in some instances evacuated from their homes. All volunteers and staff are now safe and sound, fortunately.
IN THIS ISSUE From The President................................ 2
NF Endurance Team members, NF Heroes, and CTF staff gather to celebrate their fundraising success despite the NYC Marathon's cancellation.
Hurricane Sandy did directly impact the Foundation in three ways: • The NYC Gala, the Foundation’s premier fundraising event, was postponed until December 6, 2012 • The 2012 NYC Marathon was canceled. • The Foundation’s office in NYC remained closed for two weeks due to damage to the building and lack of power.
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Children’s Tumor Foundation Aims to Make 2013 the Year of Collaboration
Foundation News................................... 3 Research News...................................... 4 Racing4Research................................... 6 NF Endurance........................................ 8 NF Walk................................................. 10 Regional News....................................... 13
G et t he Late st o n NF Email email@example.com with your name and contact info to make sure you’re up-todate on NF news and Foundation events. facebook.com/childrenstmrfdn twitter.com/ChildrensTumor
In 2012, the Children’s Tumor Foundation encouraged innovation, as evidenced by the 11 Young Investigator Awards granted this year, and also focused on attracting the pharmaceutical industry to neurofibromatosis (NF) research. As indicated in an interview with Dr. Mark Fischman, President of the Novartis Institute
of Biomedical Research, in the journal, Nature Reviews: Drug Discovery, “An interesting thing about our rare diseases approach is that after we develop a medicine for a rare disease, we realize how many more patients have that disease than we thought when we started. Physicians are reluctant, or perhaps unable, to recognize rare diseases if they continued on page 4
FROM THE PRESIDENT A note from Children’s Tumor Foundation President JoHN w. RISNER
Children’s Tumor Foundation
ANNUAL BENEFIT GALA NEW DATE: Thursday, December 6, 2012 Cipriani Wall Street · New York, NY
Richard A. Horvitz
Kaleb Yohay, MD
2012 Children's Tumor
Cornell Medical Center
Children's Humanitarian Award
Children's Humanitarian Award
Race Car Driver
Cuban Jazz Artist
Master of Ceremonies
For more information or to buy tickets:
www.ctf.org/gala To participate in the silent auction, visit
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 Denise Pitzman, Chapter Council President Daniel Altman Laura Ganio Bona William Brooks Colin Bryar John Catsimatidis Tracy Galloway Daniel Gilbert John Golfinos, MD Daniel Graeff 2 |
Steve McKenzie 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 Doris Schnuck Carolyn E. Setlow Ed Stern, Pro Bono Counsel
In this newsletter, we planned to feature front page stories about our successful NYC Gala Benefit that was expecting 640 guests on November 1st, and our 75 strong NF Endurance Team running in the NYC Marathon on November 4th. Due to Superstorm Sandy, we had to postpone our Gala Dinner to December 6th, and the NYC Marathon was cancelled this year. Also CTF’s building, which is located in Zone A of Manhattan, was closed for two weeks, forcing staff to manage these events from home and alternate office spaces. While we are fortunate that our staff and their families are all safe, several of their family homes and neighborhoods suffered severe damage. It was gratifying to see our staff volunteering in relief efforts to help their colleagues and their families. The storm and resulting damage have made the work harder. Communication is more difficult, logistics more challenging, and priorities reordered. But I am proud of the dedication and effort our staff continues to show during this temporary period of adversity. We learned a lot through this process. New York University research facilities were flooded, destroying valuable animal models, cell lines, and tissue samples. This news, combined with the discovery in June that autism researchers had lost ten years of tissue samples due to a freezer failure at Massachusetts General Hospital, is disheartening. While no direct NF research was impacted, the loss of any knowledge or resource in research hurts all areas. These issues are front and center in the planning process for our NF tissue bank to be launched next year. In addition to the tissue bank, we are planning several new initiatives for 2013. These include a major learning disabilities project, a new consortium focused on vertically integrating NF2 clinical, drug discovery and, basic biology, and an acceleration of some promising work in treating dermal fibromas. In 2005 there were two clinical trials for NF. Today there are 46. This is great progress. While we are not funding all of these, we can be proud of our direct funding of seven pilot trials; our funding of the preclinical work that made many others possible; and our advocacy program that continues to support the vital work of the federally funded Congressionally Directed Medical Research Program. In addition to these trials, there are several being funded by academic labs and industry. The true measure of success is not the number of trials, but the successful ones that make it to FDA approval. I am excited about the activity in NF, and pleased that our integrated approach to research is showing some promising results.
foundation news Children’s Tumor Foundation Funds Six Drug Discovery Initiatives The Children’s Tumor Foundation Drug Discovery Initiative (DDI) program, launched in 2006, provides a drug screening mechanism for researchers with a concept that may advance therapies for the manifestations of NF. DDI awards invest relatively small amounts of funding into projects that could provide exponential return in follow-on funds from government and industry sources. Below are the six most recent DDIs funded by the Children’s Tumor Foundation:
LOOKING FORWARD Here are a few events that may be of interest. For a complete listing or more information, please see www.ctf.org/calendar 12/15 - Detroit, MI Detroit Pistons Basketball Game CTF Fundraiser 12/15 - Salt Lake City, UT NF Symposium at Shriners Hospitals for Children
Chris Maxwell, University of British Columbia and Conxi Lazaro, Catalan Institute of Oncology-IDIBELL: Targeting NF1 Associated MPNST with Aurora Kinase Inhibitors
01/16 - Portland, OR NF/Schwannomatosis Support Group Meeting 01/19 - El Nido, CA Casino Night
Filippo Giancotti, Memorial Sloan-Kettering Cancer Center: Preclinical Efficacy of the Neddylation Inhibitor MLN4924 in Neurofibromatosis Type 2
01/25 - Daytona, FL Rolex 24 Hours at Daytona Race 02/02 - Wilbraham, MA Family Dinner Event 02/09 - Cupid's Undie Run in 15 Cities www.cupidsundierun.com
Nancy Ratner, Cincinnati Children's Hospital Medical Center: In Vivo Testing of Anti-Oxidants in NF1 CNS
02/16 - Cupid's Undie Run in 2 Cities www.cupidsundierun.com
Andrea McClatchey, Massachusetts General Hospital: Heterogeneity of Drug Response in NF2-deficient Schwannomas
Rajesh Khanna, Indiana University: Assessment of Peptide-based Disruptors of the Neurofibromin and CRMP-2 Interaction as Novel Analgesics for NF1
Michael Brownstien, Pisces Therapeutics, LLC: Small Molecule Ras Inhibitor for the Treatment of Neurofibromatosis Type 1
Cupid's Undie Run registration is now available at www.CupidsUndieRun.com Cupid’s Undie Run is a one mile fun run in which participants race in their underwear, outdoors, on Valentine's Day weekend. There will be a Cupid’s Undie Run in 17 cities across the U.S. Please go to www.cupidsundierun.com for more information and to register. NF News • Children’s Tumor Foundation | 3
research news Children’s Tumor Foundation Aims to Make 2013 the Year of Collaboration Continued from page 1
don't have a cure. Once we have a cure, or even a good medicine, physicians start to recognize these rare diseases. I think our patient focus will evolve, though, as we develop more opportunities for stratification. What we now consider common diseases are of course collections of rare disorders that have the same phenotype. Our ability to partition and stratify patients will enable us to refine our medicines. I think we also need to realize that no single medicine will suffice in all cases and that we will need to develop combination therapies to deal with physiological feedback. We've already done this in cancer and infectious diseases — there's no reason why the rest of the body should be different. We will also start looking more at neglected diseases.” Moreover, Dr. Fischman is convinced that the research and development field will become extremely important and powerful, and he sees wonderful opportunities for advancement in terms of rare diseases. In order to foster collaboration between scientists and the drug industry, CTF is investing in initiatives that facilitate the research and development process in regards to NF. Here are some examples:
• The NF Registry (www.nfregistry.org), launched in June 2012, was created to identify people who may be eligible for clinical trials or other research studies being conducted in the field of NF, and to determine the commonality of specific NF characteristics. For each of the three disorders (NF1, NF2, and schwannomatosis), a specific questionnaire was developed by the clinical care advisory board clinicians affiliated with CTF. After filling out the questionnaire, the patient’s information is entered into the NF Registry’s database. When patient recruitment begins for a clinical trial of a drug candidate that may benefit a certain population of NF patients, the Chief Scientific Officer or Clinical Program Manager from CTF can identify the appropriate patients, contact them, and give them the opportunity to enroll themselves in the studies that may benefit them. Today there are over 500 patients in the NF Registry and in order to guarantee perfect data quality, a genetic counselor from Patient Crossroads Registry Network monitors the database. If an inconsistency is seen in a 4 |
patient’s answers, the genetic counselor will contact the patient and solve the issue. • The Foundation has signed a contract with SeraCare BioBank to develop an NF BioBank. The exact interaction structure between tissue collection and tissue use, and the role of CTF, clinicians, patients, and researchers in the NF BioBank, will be discussed at the upcoming Medical Affairs Committee meeting on December 10, 2012, but the Foundation is delighted to announce that the biobank provider has been selected. • As Dr. Fischman indicated in his statement, no single medicine will suffice and the development of combination treatments is critical in regards to neurofibromatosis. Indeed, the value of using multiple therapies when treating NF has been demonstrated over the past few years within the Foundation's NF Preclinical Consortium (NFPC). The Foundation is very proud to announce that a clinical trial regarding Malignant Peripheral Nerve Sheath Tumors (MPNST) will begin soon, and was funded by the Congressionally Directed Medical Research Program (CDMRP) based upon data that was generated by one of the NFPC’s laboratories.
• As indicated in previous newsletters, the NFPC is committed to establishing a preclinical pipeline for screening candidate drugs in existing NF animal models. It is one of the most ambitious projects undertaken by the Children’s Tumor Foundation and it has resulted in some great achievements: • The NFPC collaborated to perform over 20 preclinical animal studies, of which six showed promising results. • New clinical trials have been initiated or are currently under development based upon preclinical data from the NFPC. • The NFPC demonstrated that the collaborative nature of the consortium promotes efficiency and advances preclinical discovery beyond what could be achieved by labs working in isolation. • Due to the success of the NFPC, other funding organizations are ensuring that preclinical drug testing for NF will be pursued. Based upon the knowledge gained between 2008 and today, the Foundation will collaborate with other funding organizations to establish a future for preclinical drug testing in a collaborative manner.
• The Foundation has signed a master service agreement twith Cenix BioScience. The aim of this agreement is to help the Foundation offer high tech drug discovery services to the NF community in order to accelerate the translation of basic discoveries to therapeutic benefit. • The Foundation will continue its investments in the Drug Discovery Initiative (DDI) program. This year CTF funded six DDI's. (Please see page 3.) Recent years have proven that collaboration is the main driver of successful drug discovery. Therefore, the Children’s Tumor Foundation would like to make 2013 the year of collaboration; collaboration between scientists, clinicians, foundations, donors, and fundraisers. In the words of CTF’s Chief Scientific Officer, Dr. Annette Bakker, “Being from Antwerp, Belgium, I speak fluent Dutch and was pleased to discover that the Dutchmen who founded my adopted hometown of Brooklyn did so with the motto ‘Eendraght Maeckt Maght’ which means ‘Unity Creates Strength.’ I feel the same can be said in the world of NF research.”
NF News • Children’s Tumor Foundation | 5
Racing4Research: News from the Inside Track Just Around the Corner! Racing4Research’s Fifth Year at the 24 Hours of Daytona - January 25-27, 2013
There's still time to sign up as an NF Hero, join the team at the race, and see your name on the Children's Tumor Foundation Porsche during the 51st running of the Rolex 24 Hours of Daytona. Join drivers Justin Bell, Ryan Eversley, Daniel Graeff, and Ron Yarab as they take to the track to raise awareness and funds for the Foundation, as well as attempt to stand atop the winner’s podium! Visit www. racing4research.org to register and learn more about the NF Hero program and how you can join the team for this exciting race weekend! Since 2008, the Racing4Research program has raised more than $2 million for NF research, and it is looking forward to getting back to the track for the greatest endurance race in North America. As the team prepares for their fifth running of the race, driver and CTF Board member Daniel Graeff reflected on the significance of the event, "What that race represents, figuratively for the kids and families, the endurance aspect of it, surviving and doing well, never quitting despite setbacks and challenges that happen in the course of a 24-hour race, that’s a big metaphor. It works well for CTF, it is an important life lesson each year and has also been very successful."
With the end of the 2012 race season, the Foundation would like to thank all of its friends and supporters who have contributed to the program and made this the best year yet for Racing4Research: eBay Motors, eBay Mobile, Quicken Loans, Trane, Dayton Precision Services, Pirelli World Challenge Series, Grand-Am Road Racing, American Le Mans Series, Pirelli North America, Porsche Cars North America, Porsche Motorsport North America, Stewart-Haas Racing, Compass 360 Racing, Tiger Racing, Magnus Racing, Horton Autosport, Dempsey Racing, Patrick Dempsey, GSR Racing, SCCA, SPEED Channel/FOX Sports, Swirl, Inc., SaalGood PR, The Media Barons, Randy Owen, Bill Patterson, Mazda Raceway Laguna Seca, Indianapolis Motor Speedway, John McCarthy Sr., and Bell + Ammo Productions. In memory of Paul Brown.
Impressive group of drivers and supporters (L-R) Jordan Taylor, Brian Till, Spencer Pumpelly, Andy Lally, Justin Bell, Ryan Eversley, Zach Lutz, Kevin Walker, Tommy Kendall
Race Car Driver Ryan Eversley Supports CTF On and Off The Track Racing4Research driver Ryan Eversley has spent the majority of the 2012 season racing in support of the fight against NF, but in late October he joined some of his closest competitors in both GRAND-AM Road Racing and the American Le Mans Series (ALMS) for an off-track fundraiser to raise needed awareness and resources for NF research. Ryan hosted the "Checkered Flag: A Night for NF Heroes" event in Braselton, Georgia during the Petit Le Mans weekend at Road Atlanta and raised nearly $10,000 for the Foundation's Racing4Research program. The event was open to the public with guests and NF Heroes having the opportunity to talk with Eversley and other professional
drivers, get autographs, take pictures, and participate in an auction. Race cars were on display, including a Porsche Carrera GT, and the night also featured an inflatable jumping house for kids, a petting zoo, live music, and refreshments. Several local NF families participated in the event, with NF Hero Jack Burke and brother Luke taking turns helping out in the acoustic section of the band. The evening ended with Jack's mom, Beth O'Brien-Burke, speaking to the crowd, sharing her family’s story, and thanking everyone for their support of the Foundation.
Jack and Luke Burke with Jon Fisher
Pirelli North America Partnering with CTF's Racing4Research Program and
To kick-off the beginning of a season-long partnership in 2013, Pirelli Tire North America launched a Facebook campaign to benefit CTF in honor of the upcoming Formula 1 United States Grand Prix. Fans are encouraged to “Like” the Pirelli North America Facebook page; Pirelli will donate $1 to the Children’s Tumor Foundation for each new “Like.” (www.facebook.com/pirelli)
Looking ahead, CTF and Pirelli, the sole tire supplier for the Formula 1 Series, would like to partner at races throughout the 2013 season, including the Pirelli World Challenge Series and the U.S. Formula Grand Prix races in Texas and New Jersey.
NF News • Children’s Tumor Foundation | 7
national programs NF ENDURANCE: iNFinite possibilities 03/17 ING New York City Half Marathon New York City, NY
The Children’s Tumor Foundation’s NF Endurance Team has participated in several sold out triathlons, marathons, and half marathons across the country. As the year comes to an end, we want to take a moment and thank all of our participants, volunteers, and supporters for their hard work and dedication to our mission. Without your support and commitment, this program would not be possible.
05/04 Indianapolis Mini Marathon and 5K Indianapolis, IN
06/23 Hawaii 70.3 Ironman Triathlon Kohala Coast, HI
06/23 Philadelphia Triathlon (Olympic & Sprint Distances) Philadelphia, PA
2012 Was Filled with Firsts and Records! First Ever NF Endurance Team in the New York City Triathlon The Children’s Tumor Foundation had 10 triathletes jump into the Hudson River, bike along the western edge of Manhattan, and run through Central Park, to compete in the sold out New York City Triathlon. NF Endurance Team member Todd Smith placed first in the overall age group division!
07/14 New York City Triathlon (Olympic Distance) New York City, NY
07/21 Rock ‘n’ Roll Chicago Half Marathon Chicago, IL
07/28 Ironman Lake Placid Triathlon & IronKids Run Lake Placid, NY
CHOOSE YOUR OWN EVENT: Run any local race of your choosing. For more information, or to register for an event, please go to www.nfendurance.org
First NF Endurance Team in the Kansas City Marathon In our first year at the Kansas City Marathon, led by Team Captain Nick Woods, 40 NF Endurance runners raised over $17,000. It was an amazing weekend from start to finish, and the Team is already gearing up for 2013.
First Kids Race Angela Auszton, an NF Mom in Krum, Texas, is using her passion for endurance events and her school’s running club to organize our first kids race. Kids will be raising funds on behalf of the Foundation by collecting pledges for each lap they run. We hope to roll out our national kids running program in 2013.
ING New York City Marathon Stuart Match Suna, Chairperson of the Board of Directors of the Children's Tumor Foundation, planned to run the 2012 ING New York City Marathon and raised $33,000, which he will be matching. Also, Stuart has committed to raising funds and running the 2013 New York City Marathon. Although this year’s NYC Marathon was canceled due to the tragic events caused by Hurricane Sandy, the Team collectively raised $280,000 with a record breaking 70 participants led by volunteer Team Captain Mary Schafer. Despite their disappointment at not being able to run the marathon, our NF Endurance Team supported the decision to cancel the event, and many volunteered in Staten Island on what would have been marathon Sunday.
SPECIAL THANKS TO: DAWN LOWELL
NF Endurance Team members participated in our first virtual training program this year. The 2012 Team received a comprehensive training plan from our Head Coach, Tom Malone. The training plans are tailored to our athletes and help them to reach a personal best time or complete their first endurance event. “Tom Malone has been a wonderful resource. As a first time marathoner, I have little experience with running, strategy, nutrition, pacing, etc. Tom has given me excellent advice and guidance and has helped me make great progress as a runner. He has also boosted my confidence heading into the marathon.” - NFE participant Dan Burton
Adopt a Hero Program Our NF Heroes from across the country have made a personal impact on our Team by writing letters and sending drawings to our participants before their big day. The NF Hero program is a great way to connect those who are unaffected by neurofibromatosis with the Foundation and its mission. If your NF Hero would like to get involved, please email firstname.lastname@example.org
Dawn, an NF Mom, organized a record breaking fundraiser in California perfectly named “Fiesta Night.” Many thanks to Dawn and her dedicated friends and family for creating a memorable evening that was attended by over 100 people and raised more than $10,000.
Morrie Ledwith Morrie, Team Captain of the 35 member Philadelphia Rock n Roll Half Marathon NF Endurance effort, helped to organize a successful NFE event that raised over $54,000. Morrie runs in honor of his Godson, MJ, and will complete his third marathon in Philadelphia on November 18, 2012.
Need a New Year’s Resolution? Join the Children’s Tumor Foundation’s NF Endurance Team in 2013! We challenge you to sign up for a new event, whether it is a sprint, half marathon, marathon, triathlon, or Ironman. Make a resolution to do something for YOU, while helping to provide hope for the millions worldwide who live with NF. Sign up at www.nfendurance.org and we will see you at the starting line! CTF Board member Bob Schaffer and his family ran the 2012 Chicago Marathon.
NF News • Children’s Tumor Foundation | 9
national programs 2013 NF Walks Save the Date 03/03 Atlanta, GA 04/20 Staten Island, NY 04/21 Nashville, TN 05/04 Glasgow, KY 05/11 Orlando, FL 05/18 Tulsa, OK 05/18 Monroe, MI 06/15 Boston, MA 06/23 Cincinnati, OH
Why Every Step Makes a Difference: Stories from NF Walk Participants Connie Sorman, organizer of the Rochester, NY NF Walk, received the following note from one of the event’s participants: “A very heartfelt thanks goes out to you and your family. You have an admirable mission and we are proud to be a part of it. I hope you know how much this NF Walk meant to us. John walked the whole course; it was the longest he has walked since his spinal fusion surgery. Every day after his surgery we would walk. First we started with a few steps to a chair. Then we added a few more steps. Eventually he walked the length of the driveway, and beyond. It was like he was training for your event. We met so many great people during the Walk. Then, to top off the day, you shared his story during the NF Hero Award ceremony. He was just beaming. And it all comes into focus again.”
09/14 Brunswick, ME 09/22 Addison Oak, MI 10/05 Mechanicsville, VA
For more information: www.nfwalk.org 212.344.6633 ext. 6691
Nicky Cole participated in the Denver, CO NF Walk: “I was inspired to participate in an NF Walk because my son Owen was diagnosed with neurofibromatosis type 1 (NF1) when he was 4 months old. At 10 months, he had his lower leg amputated. Symptoms of NF continue to change our lives, but Owen is now a thriving toddler who has amazing strength and a determination to live each day to the fullest!”
Paula Angleinovich-Hayes was a participant in the Central Jersey NF Walk: Patrick is a ten-year-old boy who all refer to as a little man. He has the most outrageously outgoing and friendly personality; everyone is drawn to him. He accepts his disorder as part of his life, and as he matures it has become natural for us to promote NF awareness. Here he is leading his community of 70 friends and family, bursting with pride, as he waves an American Flag while walking through Holmdel Park at the First Annual Central Jersey NF Walk on October 14, 2012.
Kelly DeHart formed “Team Kelly’s Wings” for the Raleigh, NC NF Walk: “I was diagnosed with NF2 at seven years old. Now, at age 21, I want to make a difference and help fund research for a cure. When I learned about the Raleigh NF Walk, my family and I immediately wanted to get involved. My first thought was, "If I sign up to walk, others may follow, and even if I only raise one hundred dollars, every penny counts!" To our surprise, family, friends, and the community came together and donated almost five thousand dollars in less than two weeks! To help spread the word, I wrote a short testimony and circulated it on social networks. After reading it, many people said that I was an "angel" because I touched their lives with my story. Therefore, I thought of the name "Kelly's Wings" for the team, and the motto "I may be an angel, but you help me fly." 10 |
“I noticed that he was limping.” by John Heropoulos
It was a beautiful September morning when I headed from Boston to Brunswick, Maine for its fourth annual NF Walk, but I wasn’t really in the mood to participate as I had plantar fasciitis and gout which were causing me foot pain.
How to Grow an Existing NF Walk by Joanne Pastel
“After co-chairing the first Minneapolis, MN NF Walk, I knew I wanted it to be an annual event. The Walk is a great opportunity to both raise funds for research and community awareness of NF, so I was honored to serve as Chair of the 2012 Walk. “Planning the second NF Walk in Minneapolis was easier because I had already learned the overall process and the importance of detail. I set a hefty fundraising goal of $60,000 (double what we had raised the previous year). I also felt it was important to increase the number of Walk participants, both those affected by NF and those who are not. With those goals in mind, I started my planning process early. For the second Minneapolis NF Walk, I thought it important to add a Social Media Chair (a decision I think directly contributed to the success of the Walk). Committees conducted monthly meetings through conference calls and emails. Once the initial planning was done, teams began to form and grow in both number of participants and amount of pledges gathered. There was even some friendly competition among some of the teams. The day of the Walk it began to rain. But soon after I arrived at the pavilion, it was filled with volunteers and participants. The second annual Minneapolis, MN NF Walk raised over $81,000! Generous sponsors, in-kind donors, teams, and individual participants came together to make an impact on NF. Chairing the Walk was a wonderful experience. I met so many extraordinary people, and felt a great personal satisfaction with the outcome. I encourage anyone who is interested in organizing an NF Walk to make the commitment. Friends, family, volunteers, and the Foundation staff will assist you each step of the way as you journey towards your Walk.
I started walking and ended up next to a man named V.J. Fairbrother. I was walking with a limp because of my problems and I noticed that he was walking with a limp as well. I really wanted to stop and turn back because of my foot pain. I turned to V.J. and asked if he’d like to return to the starting point with me since he was limping as well. He declined saying he was intent on finishing this Walk. As V.J. and I began chatting, I decided to ask him why he was limping. He responded with humility and grace. It was obvious that he would not have volunteered the information unless I had asked. V.J. told me that he had been in a plane crash on November 29, 1970 in Cam Rahn Bay, Vietnam. On board were 44 people. The crash site was located a week later; there were only two survivors, V.J. Fairbrother and Sgt. Gary Aldredge. For seven days, he explained, he lay in the midst of dead bodies and the remains of the plane. For seven days, he waited with a blown out knee and many other injuries. He had no food, no water, and no shelter. I was in disbelief. I quickly put away any thoughts of turning back and was humbled and inspired by his life, his story, and his determination. As we continued talking, I found out that he was walking for his friend, a woman with NF2. That day, I was reminded that extraordinary people participate in and benefit from the programs of the Foundation. And that is why we walk. NF News • Children’s Tumor Foundation | 11
Hurricane Sandy Delays Events, But Doesn’t Dampen Spirits
Meet The Board Laura Perfetti
Continued from page 1
Despite these odds, the CTF family persevered, motivated by the passion that drives the battle against neurofibromatosis every day. In the days leading up to the Gala, as it became evident that travel plans would be scuttled and the organizers found themselves planning by candlelight and their diminishing cell phone batteries, news came that the venue in which the Gala was being held would not have power and the event could not be held. A decision had to be made on what to do next. “As Vince Lombardi once said, ‘It’s not whether you get knocked down, it’s whether you get up,’” said John Risner, President of the Children’s Tumor Foundation. “With that axiom in mind, the volunteers who pulled together this important event, many of them without power or heat, worked through the storm to ensure that the Gala could take place as soon as possible upon recovery from the hurricane.” The new date of the annual Children’s Tumor Foundation Gala is now December 6, 2012 at the same venue, Cipriani Wall Street. As originally planned, the Foundation will honor Richard Horvitz and Dr. Kaleb Yohay with the Children’s Humanitarian Award, and will recognize Drew Leathers as the CTF Ambassador for the coming year. The master of ceremonies of the Gala will be world champion race car driver Justin Bell, and musical entertainment will be provided by grammy-nominated jazz musician Chuchito Valdes. That same “fighting spirit” was evident among the NF Endurance Team members as they planned for the NYC Marathon, which was to occur on November 4th. New York City had originally announced that the marathon would still take place post-hurricane, and as the NFE runners and their families found ways to make it to NYC, the group in NY was faced with a new challenge: getting into the Children’s Tumor Foundation offices to grab signage and other materials necessary for the big day. Because the building had been damaged, it had no power and limited access, and certainly no elevators to the 16th floor where the CTF office is located. Nevertheless, and true to that Endurance spirit, NFE Team members and CTF staff climbed 16 flights of stairs several times, essentially in the dark, to bring down the required materials for the race. A couple of days later it was learned that this year’s race would be canceled, but that energy and spirit was not diminished. “I was very excited to run this year’s marathon on behalf of the Children’s Tumor Foundation,” said Stuart Match Suna, Chair of the Board of Directors of the Children’s Tumor Foundation. “And while we’re all disappointed we didn’t get to run the five boroughs this time around, we’ll be back, and we’ll keep running and walking and doing whatever we have to do until we cross that finish line that ends neurofibromatosis.”
Hometown: Locust Valley, NY Current Town: Glen Cove, NY Education: Hofstra University; bachelor’s degree in Elementary Education, master’s degree in Teaching English as a Second Language Work with the Foundation: In addition to being a member of the Board of Directors, I am the Captain of the NF Endurance Team’s New York City Half Marathon effort, I have been a participant in the Racing4Research program for five years, I organize several fundraising events each year including a backyard carnival and a dinner auction, I am Co-President of the New York Metro Chapter of the Foundation, I host an NF Moms brunch on Long Island, and I am the Patient Representative for the NF BioBank project that CTF’s Clinic Coordinator Kathleen Berentsen has been working on for several years. Favorite Memory with the Foundation: Five years ago, my family and I helped push the Children’s Tumor Foundation’s Racing4Research car onto the Daytona race track. While doing so, many of the people in the audience at the race came over, stood on either side of us, and clapped. It was really life changing to feel such support from the public. Favorite Hobby: Almost every Friday night, my husband and I snuggle up with our “fantastic four” children to eat popcorn and watch a movie.
regional news In 2013, the Children’s Tumor Foundation will begin sending quarterly Chapter E-Blasts. These E-Blasts will include upcoming events, a featured NF Hero, a recap of special events, volunteer advice, recipes, and much more. If you would like to receive this E-Blast, please send your email address to Kristine Poirier at email@example.com.
Meet The Staff Kelly Mills Regional Manager, Volunteer Relations
The Fourth Annual Saugatuck Cup was held on October 6, 2012 in Westport, CT. Hosted by the Spengler family, boats were packed with fishers of all ages. In addition to catching fish, family, friends, and neighbors gathered for food, drink, raffles, and fun. Proceeds benefitted the Children’s Tumor Foundation as well as Memorial Sloan-Kettering Cancer Center and the 9th Floor Foundation.
The annual Ladybug Benefit Dinner in honor of NF Hero Julia “Ladybug” Perfetti was held in Glenwood Landing, NY on October 11, 2012. The event featured, dinner, drinks, raffles, a silent auction, and a “Diamond Dig.” Organizers filled a treasure chest with small black bags, each containing a gift, one of which was a diamond bracelet. Although only one attendee went home with diamonds, everyone involved enjoyed participating in an event that helped raise funds for NF research.
On October 27, 2012, the NF Clinics at New York-Presbyterian Hospital and the New York University Langone Medical Center hosted an NF Symposium for patients and families. Speakers included Dr. Kaleb Yohay, Dr. Jeffrey Allen, Dr. David Salsber, Dr. Kevin Brown, and Dr. Matthias Karajannis. The symposium was educational and tailored to its audience. First, presenters spoke to the NF community as a whole, then broke out into separate sessions on NF1 and NF2. Attendees learned the basics about neurofibromatosis, as well as specific progress being made in NF1 and NF2 research.
“When The Stars Align,” a Philadelphia event, was organized by Karyn Zazula on October 13, 2012. With a grandstand band and exciting raffles, it was an upbeat and lively night. Although the weather was chilly, the company was warm and all involved enjoyed a beautiful evening.
On October 13, 2012, Siobhan Clarke and Midge McArdle hosted “Bowling 4 Bumps-Frame 3,” an event for all ages. Participants were encouraged to dress in Halloween costumes, so Ninjas, hockey players, witches, and bears arrived to bowl for a cause. The night featured pizza, desserts, candy, raffles, and goody bags. Nearly doubling their profits from prior years, “B4BFrame 3” was a fun and successful evening.
Hometown: I grew up in both New York and Florida Current Town: Los Angeles, CA Education: University of Miami (Go ‘Canes!) Work with the Foundation: I am a Regional Manager with the Volunteer Relations Team. I work with various CTF Chapters in the West Coast and Mountain Regions to help them raise NF awareness and funds for research. I also facilitate the involvement of local chapters in the Foundation’s national programs (NF Walk, Racing4Research, NF Endurance, and Cupid’s Undie Run), and I oversee support groups, symposia, and other fundraising events in my regions. Favorite Memory with the Foundation: The Los Angeles, CA NF Walk occurred on my first day of work. Talk about a big first day. I was introduced to hundreds of inspirational NF Heroes and families and the amazing LA Walk committee, all of whom I am honored to still work with today. It was wonderful to begin my career by meeting those that support and benefit from the work of the Foundation, and to feel the team spirit of the NF community. I have a fantastic group of coworkers that I am privileged to work with every day. I appreciate being able to interact often with the incredible NF Heroes and their families, many of whom have become like family to me. I really believe in the work that we are doing, I am thankful to be a part of the CTF team, and I hope to continue helping make a difference in the fight against NF. Favorite Hobbies: Pilates, going to the beach, and traveling with my NF News • Children’s Tumor Foundation | husband.
regional news Florida
Joseph Ehrli was in elementary school when the first Florida Chapter golf tournament was held in his honor more than a decade ago. This year, Joe ventured home from his freshman year at college to support the October 15, 2012 event organized by his father, Mark, and mother, Hannah, in support of the Children’s Tumor Foundation. Once again, the course was full for the annual tournament held at Arnold Palmer’s Bay Hill Club in Orlando. Since its inception, the Florida NF Golf Scramble has raised nearly $300,000 for NF research. “We are incredibly grateful for all the golfers who return year after year,” said Mark Ehrli, “including our sponsors, Wireless Zone, Planet Hollywood, and Buca di Beppo Italian Restaurants. We couldn’t do it without you.” Three members of the 1992 Super Bowl Champion Washington Redskins also golfed in the event. Former defensive tackle Tim Johnson and defensive end Fred Stokes joined Hall of Fame cornerback Darrell Green to make up a legendary threesome.
The Robby Shelby Memorial Golf Tournament was held October 20, 2012 at the Hazen Country Club in Hazen, AR and raised nearly $27,000 for Arkansas NF Hero Miles Coven’s Racing4Research fundraising campaign. Miles attended the tournament to thank the sponsors and participants for helping him get to the 24 Hours of Daytona race in January 2013. Two Arkansas families, the Covens and Oslicas, will travel to Daytona to participate for the first time in this Racing4Research event.
Kelly Carpenter, Kelsey Richards, and Andrea Davis were interviewed at Radio Disney on Sunday, August 12, 2012 to promote the Salt Lake City, UT NF Walk. The Walk was a huge success and Radio Disney was kind enough to spread the word and donate items for the raffle.
On September 13, 2012, CTF's Arkansas Chapter enjoyed a spectacular night at the fifth annual Red Carpet for Research Gala – Dancing with Our Stars. The sellout crowd of 240 guests were energized by the "Stars," local celebrities who performed dance routines in front of a panel of judges. At this event, two Outstanding NF Community Service Awards were presented as well. The recipients were Pete Tanguay, Team Captain of the Little Rock Marathon which raised over $21,000, and Isabella Nguyen who was given the Outstanding Youth Service Award for raising $1000 to sponsor a child's trip to NF Camp. The Red Carpet for Research Gala raised $57,000 and the proceeds benefit the Children's Tumor Foundation and the NF Clinic at Arkansas Children's Hospital.
Nicole Riley and the St. Louis Porsche Club Raise Funds for CTF The St. Louis Region, Porsche Club of America (STL PCA), held their sixth biennial All-Porsche Car Show on September 16, 2012 benefiting the Children's Tumor Foundation. Since 2008, the STL PCA has embraced CTF's Racing4Research program, which closely aligns their passion for Porsches and racing. The show featured sixty of the finest examples of the Porsche brand covering the past 60+ years. Nicole Riley, one of CTF's NF Heroes, attended the car show with her family. On Nicole’s first birthday, doctors taught her family a new word: neurofibromatosis. After her diagnosis, it was discovered that she had a plexiform nuerofibroma that started at the base of her spine and entwined through all the organs from her lower abdomen to her hamstrings. The plexiform affects her ability to walk. When she's not in a stroller or wheelchair, Nicole gets around with a walker. 14 |
But you would not know that Nicole has limitations. She is an active participant in her first grade class, enjoys school, and loves singing, spending time with friends, and learning new things. She maintains a positive attitude and is a joy to be around, as expressed by the head of her school's cafeteria who thanked Nicole's parents, "for bringing such a lively young lady into the world; Nicole lights up any room she strolls or walks into." Nicole's family begins every day with a smile and optimism, and ends every night with a prayer that Nicole's plexiform will shrink and that one day she will be able to run. Many thanks to the STL PCA for contributing to making this dream a reality.
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 second annual “K's Ride for the Cure” event took place on July 22, 2012 in Salem, NH and raised $4,425, double the amount riders expected. Participants eagerly anticipate next year’s ride.
The Foundation’s annual New England Fall Gala took place on October 13, 2012 in Cambridge, MA. Over 170 people attended and $70,000 was raised for CTF. The honorees included local TV news anchors Jack and Marci Williams (also founder of Boston’s Wednesday’s Child), who received the Humanitarian Award; Dr. Scott Plotkin of Massachusetts General Hospital who accepted the Clinical Excellence Award; and Larry and Anita LaBarbera, Bill Wells, and Karin Tranghese who were given Volunteer of the Year Awards. Pictured: Dr. Scott Plotkin, his wife Candace Lun Plotkin, and their children Jake and Serena.
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 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. For more information, please visit www.ctf.org. Editor Mary Vetting, firstname.lastname@example.org Creative Katherine Wu, email@example.com
On August 11, 2012, the Thompson family hosted “Dylan’s Family Fun Day” in Lowell, MA at the Lowell County Fair. The day included food, music, raffles, face painting, a water park, and activities such as a pie eating contest and a potato sack race.
On October 8, 2012, at Westfields Golf Club in Clifton, VA, Matt Benson of Long & Foster Realtors hosted the Washington, D.C. area's first CureNFwithJack Golf Classic, a fundraiser that hopes to bring medical research closer to effective treatments for NF. Matt became aware of the Children's Tumor Foundation through NF Hero Jack Burke's parents, Beth and Jake Burke, after working with them on the sale of their home in 2008. Upon hearing about Jack and the Burke’s experiences with NF, he wanted to help. The CureNFWithJack D.C. Classic hosted 76 golfers and raised more than $24,000 for NF research. Pictured: Carol O'Connell, Matt Benson, and Jack Burke.
Thank you to all of our friends at Wireless Zone for your generous contributions to the Children’s Tumor Foundation. Over the past ten years, Wireless Zone Foundation for Giving has donated more than $320,000 to CTF. The Foundation thanks Kevin Sinclair, Chairman and Director of the Wireless Zone Foundation for Giving, Susan Suhr, its President and Director, and all the employees and donors at Wireless Zone who have contributed in such a meaningful way to the fight against NF.
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 Program Manager Suzanne Cannon, NF Endurance Team Manager Bob Skold, NF Endurance Team Development Patrice Pancza, Program Director, Grants and Foundations Garrett Gleeson, Program Director Chad Leathers, Program Director Carolyn Castellano, Project Director, Major Events Kelly Mills, Volunteer Relations Regional Manager Julie Pantoliano, Volunteer Relations Associate Kristine Poirier, Program Coordinator 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 Danielle Meyer, Tech Support, National Programs Rosa Amelia Perez, Project Coordinator Sarah Ill, Executive Assistant NF News • Children’s Tumor Foundation | 15
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The NF Forum is a weekend-long patient and family support meeting open to all people living with NF and their families. NF Forum attendees learn about the latest medical advancements in neurofibromatosis, get practical advice on NF-related issues, and learn about resources provided by the Children's Tumor Foundation.
! e t a D e h t e v Sa
NASHVILLE, TN · APRIL 18 – 21 For more information, please visit www.ctf.org/nfforum or contact Traceann Adams at 212-344-6633, ext. 6691 or firstname.lastname@example.org.