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June 11-14, 2011 Snow King Resort Jackson Hole, Wyoming PROGRAM BOOK JUNE 11-14, 2011 SNOW KING RESORT JACKSON HOLE, WYOMING CHILDREN’S TUMOR FOUNDATION 95 PINE STREET, 16TH FLOOR, NEW YORK, NY 10005 | WWW.CTF.ORG | 212.344.6633 Dear NF Conference Attendees: On behalf of the Children’s Tumor Foundation, welcome to the 2011 NF Conference. Yes we are back in the mountains! Those NF ‘historians’ among us will remember that until 2006 this meeting was held at the Hotel Jerome in Aspen, Colorado. We know many of you loved that mountain setting, and recall with fondness the time when you knew everyone at the meeting personally, every afternoon was totally free, and everyone could fit onto the Jerome’s terrace for the farewell dinner. Those early meetings were special and those of you who took part were the pioneers who laid the founding stones of NF research. We outgrew the Hotel Jerome in 2007, as meeting attendance grew from 140 in 2005 to over 300 in 2010. What happened? In short, NF research progress happened. We are no longer speculating about NF clinical trials – they are underway. As of this spring, 19 NF specific trials were listed on clinicaltrials.gov. This is incredible progress. The NF Conference remains the foremost venue for world-class discussion on NF biology. But it is now also now a forum for the clinicians to discuss ongoing NF trials, and to collaborate with the scientists as to the next drugs they should consider. The meeting agenda has expanded to accommodate these new developments in our search to unlock the mysteries of NF. Among attendees, we have about as many physicians as scientists, as well as a strong representation from industry. As the leadership of a Foundation whose goal is to end neurofibromatosis and ultimately put ourselves out of business, we see all of this growth and the resulting collaborations between attendees as evidence of the progress that’s been made toward our shared goal. As you may have noticed, this year’s Conference brings us to Jackson Hole, Wyoming. Each year since 2007, the Foundation has hosted the NF Conference in very different venues including a beach resort, and several major cities. But for 2011 we figured it was time to return to the mountains. Jackson Hole is an amazing place – Snow King Resort has majestic mountain views and is just a short walk from town where you’ll find everything from great restaurants to beautiful arts and crafts stores. And if you join us at the ranch on Saturday, on the way there you may spot elk, buffalo, moose, and maybe even a grizzly bear! We hope that Jackson Hole brings back happy memories for those of you who are wistful for Aspen. We also hope it creates new memories for everyone, whether this is your first or twentieth NF Conference. And if you still wish that you knew everyone at the NF Conference personally, why not take the chance to make some new friends? Whether at the posters, the ranch, or even the karaoke, there will be plenty of opportunities to connect with both familiar and fresh faces. And just think, twenty years from now, you’ll be able to say, ‘Wow! Do you remember when we first met way back at the Jackson Hole meeting when the NF Conference was still only 300 people …?’ Enjoy the meeting! Sincerely, Kim Hunter-Schaedle, Ph.D. George T. Orfanakos CONTENTS Table of Contents INTRODUCTION Research Programs of the Children’s Tumor Foundation .....................................5 A Landmark Research Partnership: Texas NF and CTF .........................................6 The Friedrich von Recklinghausen Award: NF Tradition and Progress ...................7 Foundation Staff ................................................................................................8 Children’s Tumor Foundation National Programs .................................................9 INFORMATION Schedule At-A-Glance ........................................................................................10 Important Notes To Chairs, Speakers & Poster Presenters ...................................11 Agenda .............................................................................................................12 Speaker Bios - Conference Chairs/Keynotes/Patient Representatives ...................13 ABSTRACTS Abstracts ..........................................................................................................14 POSTERS Basic Science ...................................................................................................32 Clinical ..............................................................................................................45 APPENDIX Participants List - 2011 NF Conference ..............................................................73 4 | Children’s Tumor Foundation • Ending Neurofibromatosis Through Research RESEARCH PROGRAMS Research Programs of the Children’s Tumor Foundation The Children’s Tumor Foundation (CTF) is dedicated to ending neurofibromatosis (NF) through research by Research Programs of the Children’s Tumor Foundation .....................................5 identifying NF drug therapies, and improving the lives of those living with the disorder. Over the years, CTF has A Landmark Research Partnership: Texas NF and CTF .........................................6 committed $35M to NF research - $10M since 2005 alone. Today our research programs include discovery research, preclinical drug testing, clinical trials and an NF Clinic Network. CTF also provides resources for NF patients and their The Friedrich von Recklinghausen Award: NF Tradition and Progress ...................7 families, and aims to increase public awareness of NF. Foundation Staff ................................................................................................8 Children’s Tumor Foundation National Programs .................................................9 CTF has long been a catalyst for federal support of NF research. Through our advocacy efforts, CTF has been instrumental in the inception and continuation of the Congressionally Directed Medical Neurofibromatosis Research Program. CTF works closely with the NIH, FDA and other federal agencies to ensure our initial investments will find Schedule At-A-Glance ........................................................................................10 further funding, flourish and have the maximum impact. Important Notes To Chairs, Speakers & Poster Presenters ...................................11 CTF’s research program priorities are established through an ongoing process of evaluation and strategic planning. Agenda .............................................................................................................12 Our current programs are highlighted below, and open to applicants worldwide! Speaker Bios - Conference Chairs/Keynotes/Patient Representatives ...................13 • The NF Preclinical Consortium - Call for NF2 Centers: Established in 2007, the NFPC is an ongoing multicenter initiative to test candidate NF therapeutics in multiple NF1 and NF2 preclinical NF tumor models and cultivate industry collaborations. CTF is now seeking NF2 Centers to join NFPC. Funding: up to $250,000/year for two years. Abstracts ..........................................................................................................14 Deadline: June 24, 2011. • Drug Discovery Initiative Awards: $15,000 for in vitro studies and $30,000 for in vivo studies of pilot preclinical drug screening. Three page application, two deadlines per year, rapid review! Next Deadline: August 31, 2011. Basic Science ...................................................................................................32 • Clinical Research Awards: Up to $100,000 to support a pilot stage clinical trial, biomarker validation study or Clinical ..............................................................................................................45 related clinical research aimed at improving and accelerating NF clinical trials pipeline. Deadline for Letters of Intent: June 24, 2011. • Young Investigator Awards: Our longest running research program provides two-year grants (salary Participants List - 2011 NF Conference ..............................................................73 commensurate to NIH Kirschtein Award, plus a $5,000 travel allowance) for pre- and post-doctoral researchers in NF research. YIA is as a cornerstone program of the NF research community, with many former YIAs being todays NF leaders! Next deadline: TBA - early 2012. • NF Clinic Network (NFCN): Recognizes those clinics offering comprehensive NF clinical care. Now 44 Affiliate Clinics. Any clinic may apply for participation and be eligible to receive seed funding for clinic activities. For info contact Kathleen Berentsen: [email protected]. • COMING SOON! Schwannomatosis Awards: CTF has been a key player in schwannomatosis research advances investing over $700,000 in this since 2008. CTF will be announcing schwannomatosis funding opportunities in Summer 2011 following our next Schwannomatosis Workshop in June. All programs open to U.S. and international applicants. For more information visit www.ctf.org www.ctf.org or contact Kim or Min at CTF - [email protected] or [email protected] 2011 NF Conference • Jackson Hole, WY • June 11-14, 2011 | 5 A Landmark Research Partnership: The Texas Neurofibromatosis Foundation and the Children’s Tumor Foundation In 2010, the Texas Neurofibromatosis Foundation (TNFF) and Children’s Tumor Foundation (CTF) embarked on an exciting new approach to accelerating NF research progress. Our two foundations decided to leverage our resources
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