Triathletes will compete and raise money to fund rare disease research
NEW YORK -- The Children’s Tumor Foundation (CTF) is pleased to be the exclusive official charity partner for the Tri Fort Worth triathlon, which takes place in Fort Worth, Texas on May 21, 2017. The Children’s Tumor Foundation is the leading nonprofit organization dedicated to funding research for neurofibromatosis (NF), a genetic disorder that causes tumors to grow on nerves throughout the body. NF affects one in 3,000 people of all populations; currently there is no effective treatment or cure.
On May 17, hundreds of landmarks in the U.S., U.K., Canada, and Australia will “Shine a Light on NF” to raise awareness for rare genetic disorder
NEW YORK – February 1, 2017 – The Children’s Tumor Foundation is pleased to announce that in May, in honor of NF Awareness Month, buildings, bridges, monuments, and landmarks across the globe will show their support in the fight against neurofibromatosis (NF) by lighting up in blue and green, the official colors of NF. NF is a genetic disorder that affects 1 in 3,000 births of all populations, and causes tumors to grow on nerves throughout the body. It can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. There is not yet a cure.
Your ongoing support has allowed us to take huge steps forward in 2016 in the fight against NF. Your efforts and contributions have been instrumental in advancing neurofibromatosis research, providing hope for the millions worldwide who live with NF, and bringing us ever closer to our shared goal of ending NF forever.
On Saturday, November 19, 2016, Dan and Jennifer Gilbert hosted the beNeFit IV – “An Aquatic Affair to End NF” in downtown Detroit, where more than 1,700 guests helped raise $5.1 million for the Children’s Tumor Foundation (CTF). Over the past four years, the beNeFit has raised a combined total of $16 million toward ending NF.
Chronic illness in youth poses numerous challenges to the parents who care for them. Across various pediatric populations, psychological functioning in parents is compromised by the stress of having a child with special healthcare needs. This pilot study, Feasibility and Preliminary Efficacy of an Internet Support Group for Parents of a Child with Neurofibromatosis Type 1, investigated the feasibility and preliminary efficacy of an Internet Support Group (ISG) for parents of children with NF1.