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Save the Date! The Children's Tumor Foundation's annual NF Forum will occur June 8-10, 2012 in New Orleans, LA. This year, for the first time, the Forum will be held adjacent to the NF Conference which is the world's largest gathering of NF researchers, doctors, scientists, and clinicians.

Click here to view a video from last year's NF Forum.

Click here for photos from 2011's NF Forum.

For more information please contact Traceann Adams at 212-344-6633, ext. 236, or tadams.com. 

Please mark your calendar and plan to attend!

We are planning the 2012 NF Forum in New Orleans, June 8-10, and we'd like your input.  Please click here and take our survey of possible seminar topics.  It's for you, tell us what you want! 

Today we feature a Guest Blog featuring a report from the 2011 NF Conference from Dr. Fawn Leigh, a pediatric neurologist at the Massachusetts General and Harvard Medical School. Dr. Leigh presented the following project at the Conference, and is looking for further research collaborators, as well as any persons with NF1 who would be willing to participate and donate tissue, whether or not they are currently under care of an NF clinic.

At the 2011 NF Conference in Jackson Hole I gave a talk highlighting my findings from a pilot study to identify modifier genes that may inform the identification of potential drug targets and treatments in NF1. The study focused on a search for modifier genes of cutaneous (dermal) neurofibroma tumor burden in NF1. This was done through a genome-wide association study (GWAS).  300 NF1 subjects identified as having either the largest or least 15% of cutaneous tumor burden were genotyped using the Affymetrix GeneChip 6.0 platform. This provided 909, 622 single nucleotide polymorphism (SNP) markers and >946,000 probes for copy number variants (CNV).  The analysis revealed potential hits (P values of 10-4 to 10-7) with multiple SNPs at each of several regions of the genome. Each of these segments constitutes a candidate region that merits genotyping in an additional cohort of extreme subjects to either confirm or refute its modifier status, which is ongoing.  The CNV analysis is in progress. The current GWAS study is a collaboration of six centers across the world.  Five new centers recently joined this project. 

For researcher or patients seeking additional information about participating in this study, please contact:  Stephen Ranney (Clinical Research Coordinator)

Email: administrator@cnfad.org               Office: 617-724-2365

As the 2011 Neurofibromatosis Conference disappears in the rear view mirror, its worth taking a look back to how this event has evolved in the past 5 years and how far we've come.

My first NF Conference was in 2005, Aspen, CO. I attended that conference as a guest of the Foundation, before taking on the role of Chief Scientific Officer at CTF that fall.  120 people were there. The agenda was almost entirely basic research and it was clear this was a committed and collaborative group of researchers. But the path to treatments was still a bit fuzzy. Over subsequent years our NF community has established NF activities including preclinical drug testing, local and national clinical trials, and a national clinic network. CTF has been a driving force in all of these areas. As the clinicians became more engaged, as we attracted researchers from other fields and even industry representatives to attend, the NF Conference grew to the current size of well over 300 attendees this year.

As the NF Conference has evolved and grown it has been interesting to see the evolution of collaborations especially between the clinicians and the preclinical and basic researchers. CTF has spent the past few years helping to cultivate these relationships, but as the saying goes (appropriate for the mountain setting of this year's conference) 'you can lead a horse to water but you can't make it drink'. In other words, collaborations can be aided but not forced. It is therefore truly exciting to report that from this year's NF Conference there is clear and overwhelming enthusiasm from both the scientists and the clinicians that collaboration is vital and from the Conference presentations, evidence that these partnerships, as well as partnerships with biotech and pharma partners, are underway.   

For those living with NF, I hope it is heartening to know that we are living in the most exciting time of NF research progress on all fronts, NF1, NF2 and schwannomatosis. With your support, we look forward to continuing support of this progress and keeping you informed as it unfolds.