From the Network

Join Us in Supporting the Neurofibromatosis Community: August Membership Drive

Join Us in Supporting the Neurofibromatosis Community: August Membership Drive

August is an exciting month, offering the final opportunity to enjoy the summer sun and perhaps take one last getaway before the back-to-school season begins. It is also a crucial time for us as we launch our annual membership drive! We are committed to raising awareness about neurofibromatosis (NF) and serving as a vital resource for the NF community. However, we cannot achieve our goals without your support in spreading the word about our mission. This membership month, we invite you to help amplify our message and encourage others to stay iNFormed.

August is an exciting month, offering the final opportunity to enjoy the summer sun and perhaps take one last getaway before the back-to-school season begins. It is also a crucial time for us as we launch our annual membership drive! We are committed to raising awareness about neurofibromatosis (NF) and serving as a vital resource for the NF community. However, we cannot achieve our goals without your support in spreading the word about our mission. This membership month, we invite you to help amplify our message and encourage others to stay iNFormed.

In The News

Mirdametinib Represents Long-Awaited Approved Treatment Option for Adult NF1-Associated PNs

The FDA approval of mirdametinib (Gomekli) marked a key milestone for adult patients with neurofibromatosis type 1 (NF1)–associated plexiform neurofibromas (PNs), with an agent now indicated for the treatment of this population for the first time, according to Justin T. Jordan, MD, MPH, FAAN.

Research

Pipeline of Experts Advances Discovery in Neurofibromatosis

It can spawn tumors throughout the nervous system and bone deformities that riddle the whole body with pain. One of the most common rare diseases in the world, the genetic condition neurofibromatosis type 1, or NF1, can cause a wide spectrum of mild to severe symptoms—all stemming from a single mutation on a solitary gene: the NF1 gene on chromosome 17.

Event Highlight

Meet the Docs Lunch and Learn in Georgia

The NF Network is excited to introduce an invaluable educational lunch and learn event to the Georgia community! On September 6, seize the opportunity to connect with fellow NF families while enjoying a complimentary lunch at this insightful event! Join us at the Marietta History Center, located at Marietta Market Square, 1 Depot St, Marietta. Kick off your day by exploring the popular Farmer's Market, then gather for an enlightening session featuring three expert NF speakers.

People Spotlight

Spreading Joy: Kaitlyn's Inspiring Journey with Baby Doll Therapy

Kaitlyn, who adores baby dolls, received a Real Care doll named Lilly a few years ago. After high school, she dreams of working as a teacher's assistant, despite the challenges of managing her SSI services. Driven by a desire to give back, Kaitlyn began bringing Lilly to retirement communities, setting up monthly Baby Doll Therapy sessions at The Villages in Germantown with the help of her aide, Lori Gresham.


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