National Volunteer Week 2018: 40 Years of Volunteers

Apr 17, 2018, Posted in Community, Latest News

National Volunteer Appreciation Week takes on a completely new meaning this year, our 40th anniversary of the Foundation.  The National Neurofibromatosis Foundation, or NNFF, as Children’s Tumor Foundation was originally known, was born out of a patient venting her frustration to her clinician in 1978. Lynne Courtemanche, an RN, was the patient and Dr. Allan Rubenstein, the clinician. “There ought to be a place for people like me,” said Lynne and Dr. Rubenstein’s simple reply was, “So why don’t you start one?”  And so she did.


Children’s Tumor Foundation Named A Top Nonprofit to Work For

Apr 5, 2018, Posted in CTF in the News, Latest News, Press Release

We are very proud to announce that the Children’s Tumor Foundation has been ranked as one of the best nonprofit organizations to work for by the leading publication for nonprofit management, The Nonprofit Times. This annual ranking is dedicated to finding and recognizing the best employers in the nonprofit industry.

State Representative Robert Cole Sprague Presents First Signed Law Declaring May as NF Awareness Month in the State of Ohio

Mar 12, 2018, Posted in Awareness, Latest News, Press Release

Whereas dozens of states approve proclamations each year, Governor John Kasich signed first law in the country recognizing awareness of genetic disorder


Accelerating NF Research Thru Technology

Feb 28, 2018, Posted in Latest News, NF Hero, NF2, Science

By Onno Faber

Rare Disease Day is recognized every year on the on the last day of February. It’s a time for the entire rare disease community to come together to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives. Neurofibromatosis affects 1 in 3,000 people overall; NF2 is even more rare (1 in 25,000) and schwannomatosis even more rare (1 in 40,000). 

We asked NF2 patient Onno Faber to tell us about his journey to a diagnosis and how he leveraged his experience as a Silicon Valley technology entrepreneur to accelerate rare disease research & drug development.

Children’s Tumor Foundation Receives 4-Star Rating from Charity Navigator 9th Year in a Row

Feb 21, 2018, Posted in Latest News

The Children's Tumor Foundation is excited to announce that it has once again been honored with a 4-star rating from Charity Navigator, America's largest and most-utilized independent evaluator of philanthropies.

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