Advocating from Afar: NF Network Advocacy Program Goes Virtual

Advocates participating in the NF Network Advocacy Program transformed their work-from-home spaces into advocate-from-home spaces to conduct over 240 congressional meetings in early February. Since 1996, the NF Network Advocacy Program has played a vital role in securing over $380 million in federal research dollars for NF. Our work on Capitol Hill wouldn't be possible without you, and we thank you for your continued support!


NF1 Survey: Communication, Swallowing, and Hearing for Children and Individuals with NF1


California State University is conducting a survey to learn about communication disorders, swallowing difficulties, and hearing difficulties to learn how they impact individuals with NF1. Parents of individuals with NF1 are also invited to participate.

Pain in NF1: iCanCope Mobile Application Study


Dr. Frank Buono's DoD-funded study sets out to understand the impact of the iCanCope - NF mobile application on individuals suffering from chronic pain due to NF1, with the goal of reducing pain symptoms. If you are currently experiencing NF1 pain, you are invited to participate in this clinical trial.

Be Prepared and "Make a Plan"


As vaccinations for COVID-19 continue to roll out in the early part of 2021, it is essential to stay connected with your NF specialists and be proactive with your NF care. Our friends at AstraZeneca have compiled a helpful guide to “Make a Plan” that will continue care while also taking COVID-19 safety protocols into account.

Mikaela Bradley: Consumer, Advocate, and Neurofibromatosis Warrior


Living with NF1 has given Mikaela a new perspective on life. Through her experiences, she has learned to challenge herself and "live with NF on her own terms." Mikaela shares her NF story and insight in participating in the CDMRP-NFRP consumer review process.

Upcoming Events
The mission of the NF Network "is to find treatments and a cure for neurofibromatosis by promoting scientific research, improving clinical care, and providing outreach through education and awareness while offering hope and support to those who affected by NF."
Will you join with us?