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A Conversation with Joan Engel, Former President of the National Neurofibromatosis Foundation

Jun 11, 2018

The Children’s Tumor Foundation began in 1978 as the National Neurofibromatosis Foundation (NNFF), established by NF patient Lynne Courtemanche, RN, her doctor Allan E. Rubenstein, MD, and the attorney, Joel S. Hirschtritt, Esq. A parent of a child with NF, Joan Engel was President of the Foundation from 1981 through 1984.

As we celebrate 40 years of driving research, expanding knowledge, and advancing care for the NF community, we asked Joan to reflect upon the origins of the Foundation, how the community has grown, and the progress made in research for treatments and a cure.

Stories of NF: Cherilyn B.

Jun 8, 2018, Posted in NF Hero, NF1

I was diagnosed with NF1 as a baby; I don’t know exactly when, but I’ve known as far back as I can remember.

I have a large tumor on my neck/right cheek near my ear, with less than half a dozen smaller fibromas over the rest of my body that only just started to appear within the last few years.

First Funding Cycle of the Drug Discovery Initiative Registered Report (DDIRR) Awards Announced

The Children’s Tumor Foundation (CTF), the largest non-governmental funder of neurofibromatosis (NF) research, and PLOS ONE, a leading peer-reviewed scientific journal, are pleased to announce the successful completion of the first funding cycle of the Drug Discovery Initiative Registered Report (DDIRR) 2017 Awards, a funder-publisher partnership integrating the Registered Reports model into the grant application process.

Neurofibromatosis Clinical Research Awards - 2018 Cycle

Jun 4, 2018, Posted in Awards, Science

The Children’s Tumor Foundation (CTF) invites all researchers to apply for a Clinical Research Award of up to $150,000 for projects involving manifestation(s) of any form of neurofibromatosis (NF). Pre-applications (Letters of Intent) are welcomed from June 4 to September 10, 2018.

Letter from NFE athlete John Sullivan

Jun 1, 2018, Posted in Community, NF Endurance, NF Hero

On April 5, we lost one of our long time NF Endurance alumni athletes. John James Sullivan Jr. was 43 years old. Beginning with the Long Beach Marathon in 2005, he was a huge supporter of the Children's Tumor Foundation and the NF Endurance team.

John’s brother, Joe, shared with us some more about his brother, and the letter from John detailing the legacy he hoped to leave: