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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 story below, from the Detroit Free Press, highlights not only true grit and determination, but a community of compassion and spirit.   Special thanks to Dan Gilbert and the Quicken Family of Companies for their role in this holiday triumph. 

http://www.freep.com/article/20111224/NEWS01/112240368/Wayne-State-grad-s-dream-of-medical-school-becomes-a-reality?odyssey=mod|newswell|text|FRONTPAGE|s

House and Senate negotiators have agreed to include $12.8 million for NF research in
the 2012 Department of Defense budget. While this represents a cut from last year’s
funding level of $16 million, even more drastic reductions to NF research had been
feared.

George Orfanakos, President of the Children’s Tumor Foundation, praised NF
advocates for making their voices heard in Washington, particularly during the past two
months of budget negotiations.

“Only a full-court press from the NF community prevented further erosion of government
funding for a program that is critical to developing viable treatments for those with NF,”
he said.

The NF research funding has been included in the broader appropriations bill that is
being sent to President Obama for signature.

The Children’s Tumor Foundation has appointed Annette Bakker, Ph.D., to the newly-created position of Senior Vice President of Research and Drug Development.  The Foundation is dedicated to improving the health of those affected by neurofibromatosis, more commonly referred to as NF, and is the largest non-governmental funder of NF research nationally.

Dr. Bakker is originally from Belgium and holds a Ph.D. in cell biology from the University of Antwerp.  After more than a decade practicing basic research at University of Antwerp, Yale Medical School, and the Salpetriere Hospital in Paris, she was appointed assistant professor at University of Paris. Since 1998, Dr. Bakker has applied her basic research skills in drug discovery. Most recently she created and headed the oncology research and development unit at Siena Biotech in Italy, where she focused on drug discovery and development. Dr. Bakker’s research was internationally recognized by more than 30 peer-reviewed papers, patents, and innovation awards.
Dr. Bakker was hired after an exhaustive, international search and her appointment is part of the Foundation’s ongoing effort to expand its NF-related medical and research programs, notably in preclinical drug testing and clinical trials.  As well as having a broad background in neuroscience and cancer research, Dr. Bakker brings her research and pharmaceutical industry expertise of liaising and negotiating with biotechnology and pharmaceutical companies.
“Annette has proven experience building relationships with pharmaceutical companies and scientists across the globe, which can accelerate the development of promising treatments for patients with NF,” said George Orfanakos, President of the Children’s Tumor Foundation.

Since 2005, the Children’s Tumor Foundation’s research efforts have been led by Dr. Kim Hunter-Schaedle, Chief Scientific Officer. Earlier this month, Dr. Hunter-Schaedle resigned from her position as of yearend.  During her tenure, Dr. Hunter-Schaedle directed a major expansion of the funding and scope of Foundation-sponsored scientific and medical activities, and coordinated activities with 44 partnering treatment facilities nationwide that are part of the NF Clinic Network.

Bruce Korf, M.D., Ph.D., a respected NF researcher at the University of Alabama Birmingham, and the Chairperson of the Children's Tumor Foundation's Medical Advisory Committee, said, "As the Foundation's first Chief Scientific Officer, Kim was the architect of the CTF research program, which is now recognized as the leading privately-funded NF research program in the world."

In addition to her drug development responsibilities, Dr. Bakker will ensure a seamless transition until a new scientific officer can be hired.