From the Network

#UnveilingNF: Spreading Awareness with Your NF Stories

#UnveilingNF: Spreading Awareness with Your NF Stories

In The News

Thank You FY22 House “Dear Colleague” Letter Signers

Upon completing our Virtual Hill Visits back in February, we asked for your help in contacting members of the House of Representatives. Your requests asked for support of continued federal funding for NF research, and we are proud to announce this year’s FY22 House “Dear Colleague” letter signers.


Brigitte Widemann Named a Top Ten Clinical Research Achievement Awardee

Brigitte C. Widemann, M.D., Chief of the Pediatric Oncology Branch at the National Cancer Institute, has been named a Top Ten Clinical Research Achievement Awardee by the Clinical Research Forum and has received a Distinguished Clinical Research Achievement Award for her study “Selumetinib in Children with Inoperable Plexiform Neurofibromas.”

Event Highlight

10 Years of Hope: The NF Hope Concert Story

As we celebrate a decade of NF Hope Concerts, co-founder Jeff Leibow reflects on some of the highlights from the past 10 years of shows. From the first call he made to Kim at the NF Network, to the decision to expand to new cities and pivot to livestream events, Jeff shares the incredible journey of the concerts and celebrates a proud milestone of raising over $1 million for neurofibromatosis.

People Spotlight

“Painting a New Portrait of NF:” Rachel Mindrup and Many Faces of NF

This May, for NF Awareness Month, we are “painting a new portrait of NF” and sharing the stories of some of the members of our NF community. Working in partnership with Rachel Mindrup, we are honored to showcase several incredible portraits from her “Many Faces of NF” series and help spread awareness with her artwork and the stories behind her pieces.

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