Zoe Comiskey is 16 years old and lives with NF1. She is currently working on her Girl Scout Gold Award. She developed her project in conjunction with her doctors at Children’s Hospital of Philadelphia. Zoe will be meeting with newly diagnosed patients and their families to share her story and help them feel better about this new world they’ve now entered.
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.
The following interview was conducted on November 13, 2017 with Jim Hubbard, a school psychologist and counselor, by Kate Kelts, RN, BSN, patient support coordinator for the Children’s Tumor Foundation. Jim has 33 years of experience as a school psychologist working with children and families, as well as living with NF1 himself. This resource is meant to serve as a resource for parents beginning the process of advocating for their child’s education.
Hundreds of Landmarks Worldwide to ‘Shine a Light on NF’
'I Know a Fighter’ Movement Brings Attention to Brave Heroes Battling Disease
NEW YORK – February 1, 2018 – Neurofibromatosis, also known as NF, is a genetic disorder few have heard of, but the Children’s Tumor Foundation is working to change that with the expansion of its #EndNF campaign.
It’s cold outside! These chilly winter days are a great time to reflect upon a number of the NF Walks that took place during the warmer autumn months of August and September. Thanks to all of the participants, volunteers, organizers, and donors who made these events, and all the 2017 NF Walks, so impactful!