Shine a light on neurofibromatosis, a genetic disorder affecting 1 in every 3,000 births

Daily Dish

SALT LAKE CITY, Utah (ABC4 Utah) – Neurofibromatosis, or NF, is a genetic disorder affecting 1 in every 3,000 births, and it causes tumors to grow on nerves throughout the body. It affects all populations, races, ethnicities, and genders equally. NF can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer.

The Children’s Tumor Foundation (CTF) is the world’s leading nongovernmental funder and driver of NF research for all forms of neurofibromatosis, with the additional mission focus of expanding knowledge and advancing care for the NF community. Shine a Light NF Walks are taking place all across the country, raising money for research that is helping both children and adults living with all forms of NF, and bringing the community together, both on- and offline.

Utah’s Shine a Light NF Walk is going virtual again this year due to COVID concerns. People can still register to participate in online and virtual events and can organize a safe walk in their own neighborhood with friends and family.

Three year old Ryker Stevens and his parents, Devin and Cypress, are planning a NF walk in their neighborhood and will participate in the virtual activities on August 28th.

While the FDA approved the first-ever treatment, Koselugo (selumetinib), in 2020, for inoperable plexiform neurofibromas, there is no cure at this time for NF. Clinicians and scientists are optimistic that with funding for more research, more actionable treatment options to improve the lives of the 2.5 million people living with NF will be attainable.

Shine a Light NF Walk is the signature fundraising event of the Children’s Tumor Foundation (CTF), bringing neurofibromatosis (NF) out of the shadows and inspiring the community to come together to raise critical funds for NF research. This community event supports NF research, raises awareness, and provides support for individuals with NF and their families. NF Walks are organized by local volunteers.

The Shine a Light NF Virtual Walk Utah event takes place Saturday, August 28, 2021. Check-in starts 5PM. People can donate or register to walk at www.join.ctf.org/event/2021-shine-a-light-nf-walk-utah.

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