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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.

Here is 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!

The Children's Tumor Foundation is pleased to announce that it has been honored with a 4-star rating from Charity Navigator, America's largest and most-utilized independent evaluator of philanthropies. This is the 3rd year in a row that Charity Navigator has given the Foundation its highest ranking. Less than 10% of charities rated have received 4-stars for three consecutive years, which places the Foundation in prestigious company.

"Receiving four out of a possible four stars indicates that your organization adheres to good governance and other best practices that minimize the chance of unethical activities, and consistently executes its mission in a fiscally responsible way," wrote Ken Berger, president and chief executive officer of Charity Navigator, in a letter to the Foundation, "This 'exceptional' designation differentiates the Children's Tumor Foundation from its peers and demonstrates to the public that it is worthy of their trust and their donors' hard-earned dollars."

George Orfanakos, president of the Children's Tumor Foundation, stated, "Being recognized by an organization as highly regarded as Charity Navigator is extremely validating. We expect the highest standards from ourselves and it is encouraging to know that we are succeeding. This is a testament to the hard work, dedication, and efficiency of our scientific community, our generous donor base, our Board of Directors, our volunteers, and our staff, all of whom are united in the common goal of ending NF. At the Children's Tumor Foundation, we are committed to investing our precious resources efficiently and effectively into neurofibromatosis (NF) research, public education, and patient support. This 4-star rating for the third consecutive year affirms our practice of financial transparency and elevates us into the realm of the nation's most respected philanthropies. This is a community that we are proud to be a part of, and a status that we plan to sustain."

Forbes, Business Week, and Kiplinger's Financial Magazine, among others, have profiled and celebrated Charity Navigator's unique method of applying data-driven analysis to the charitable sector. Statistics show that users of Charity Navigator's site gave more than they planned to after viewing Charity Navigator's findings, and in fact, it is estimated that last year Charity Navigator influenced approximately $10 billion in charitable gifts.

To view the Children's Tumor Foundation's Charity Navigator page please click here.

To view the letter acknowledging the Foundation's rating please click here (pdf).

The National Institutes of Health has announced a funding opportunity for the NIH Director’s Early Independence Awards for junior investigators wishing to “skip the post-doc” and immediately begin independent research. Budgets may be up to $250,000 in direct costs per year for up to five years.

Eligible candidates must be within one year of receipt of a terminal research degree (Ph.D., etc.) or completion of clinical residency.

All areas of research relevant to the mission of NIH welcome. These are highly competitive awards but I encourage young neurofibromatosis investigators to apply given the NIH's growing interest in, and support of, rare diseases research.
The deadline for submitting Early Independence Award applications is January 30, 2012 with Letters of Intent due by December 30, 2011. See the instructions in RFA-RM-11-007. Frequently Asked Questions about the Early Independence Award Program are answered at http://commonfund.nih.gov/earlyindependence/.

Schwannomatosis is the rarest form of neurofibromatosis (NF), affecting an estimated 1:40,000 people, and it causes tumors to grow on peripheral nerves as well as severe and unmanageable pain.  It has also been the most mysterious form of NF, both in terms of accurate clinical diagnosis and in terms of understanding its biology and genetics.

In 2005, the Children's Tumor Foundation spearheaded the publication of the first diagnostic criteria for schwannomatosis.  In those initial critieria, it was stated that if a person had one or two vestibular schwannomas  (tumors on the 8th cranial nerve in the brain) then this would exclude a diagnosis of schwannomatosis and indicate a diagnosis of NF2.  In 2007,  the first candidate gene for schwannomatosis - INI1/SmarcB1/Snf5 - was identified, and though this gene does not appear to be universally involved in all cases of schwannomatosis, it has aided in the diagnosis of the disorder and in researching its molecular basis. 

Now a team led by Dr. D. Gareth Evans (University of Manchester) reports in the American Journal of Medical Genetics on two people each presenting with a unilateral (single) vestibular tumor as well as peripheral nerve tumors but for whom a diagnosis of NF2 has been eliminated through clinical or genetic evaluation.  This is an important finding, and suggests that there may be other cases elsewhere that have previously been diagnosed as NF2 that are in fact schwannomatosis.

The Children's Tumor Foundation has made significant contributions to advancing schwannomatosis research through grant funding, including establishing the first Schwannomatosis International Database, as well as organizing a series of International Schwannomatosis Workshops to spur collaboration.  In December, we'll be announcing some newly funded schwannomatosis research projects and unveiling future plans for our continued commitment to advancing this research area.

We are delighted to announce that the report from the Children's Tumor Foundation 2011 Neurofibromatosis Conference has been published in the November 16th issue of the scientific journal Acta Neuropathologica. 
Held in Jackson Hole, WY in June, the 2011 NF Conference was our biggest to date attracting over 300 international NF researchers and clinicians.  We thank the Conference Co-Chairs Dr. Nancy Ratner (Cincinnati Children's Hospital Medical Center) and Dr. Michel Kalamarides (Hopital Beaujon, Paris) for their leadership in both the Conference and the publication.
This marks the third year in a row for publishing the NF Conference report in a scientific journal. The 2009 and 2010 NF Conference reports were published in the American Journal of Medical Genetics. The goal of these publications is to inform and update the broader research and clinical community on the exciting progress being made in NF research and to encourage more persons to focus on NF research.
The 2012 NF Conference takes place June 9-12, 2012 in New Orleans, LA. Look for more announcements soon!