Our Sincerest Thanks: NF Network Annual Appeal

Author: Breanna Bronowski-Stutsman
Published On: 01/14/2021

2020 was a year that all of us will never forget. In a time of challenge and loss, our NF community continued to fight and ultimately, one important piece prevailed – hope.

Last year, despite the obstacles and adjustments, the NF Network touched the lives of over 1,600 families and individuals affected by NF. Whether they sought counsel regarding their diagnosis of neurofibromatosis, or requested educational information or NF specialist referrals, the NF Network continued to serve our community with opportunities to educate, advocate, and connect.

In recent news, the NF Network was proud to announce that $20 million in federal funding had been secured for NF research through the Congressionally Directed Medical Research Program – Neurofibromatosis Research Program (CDMRP-NFRP). These funds open the door for new research opportunities and continued success in the development of therapies.

As a direct result of our advocacy efforts, the NF Network has played a vital role in securing over $382 million dollars in federal research funding for NF. With your help, we have become one voice in D.C. and as a result, the first ever treatment for neurofibromatosis was approved for use by the FDA back in April. Koselugo has made its way through the clinical trials pipeline and is now be accessible to physicians across the country.

In a year full of ups and downs, we are grateful to have your partnership in the fight to end NF. YOU have ensured that we can continue our mission-related initiatives of education and awareness while offering hope and support to those affected by NF.

From the bottom of our hearts, we THANK YOU for sharing your compassion and generosity with the NF Network and joining us on this journey as we continue our mission: β€œto find treatments and a cure for neurofibromatosis by promoting scientific research, improving clinical care, providing outreach through education and awareness, while offering hope and support to those affected by NF.”

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