NF Network News - July 2024

Farewell to a Dear Friend,

Dr. Vincent Riccardi

It is with heavy hearts that we mourn the passing of Dr. Vincent Riccardi, the most influential name in NF care of the last fifty years. He passed away in his sleep on July 2nd, age 83. When asked, “Why NF?”, he would explain that in medical school a mentor advised him that to make a real difference he should specialize in a field no one else was studying. To the everlasting benefit of all of us, he chose neurofibromatosis. Read more

Dr. Brent K. Young Awarded Knights Templar Eye Foundation Grant for NF1 Research

Dr. Brent K. Young from Stanford University School of Medicine located in Palo Alto, California was awarded a $90,000 grant for his research entitled: Survival and regeneration of retinal ganglion cells in NF1.

SpringWorks Therapeutics Completes Submission of New Drug Application to the FDA for Mirdametinib for the Treatment of Children and Adults with NF1-PN

SpringWorks' breakthrough therapy, mirdametinib, has been submitted to the US FDA through a New Drug Application for the treatment of NF1-PNs in children and adults.

Community that Keeps Going & Growing

The #NFStrong 5K in Boardman, OH celebrated its 11th year in late June. Joined by lots of familiar and friendly faces, Jenn Krawchyk's dedication to continuing to bring this community together shows how important it is to have a place to meet, mingle, and support each other through life's constant changes and challenges.

Decoding NF for His Son & Thousands of Others

Shane Smith wanted to know anything and everything about NF1 when his son was diagnosed. Collecting hundreds of articles and amassing countless information, Shane began to connect with peers and professionals in the NF field. Using the information he's collected and people he's met, Shane is now sharing is findings in a first of its kind podcast, Decoding NF.

Upcoming Events

Links for Lauren

Saturday, August 10th

Madison, WI

Cornhole Tournament Benefiting the NF Network

Sunday, August 18th

Morrow, OH

Orlando's #NFStrong 5K for Neurofibromatosis

Sunday, September 15th

Orlando, FL

Memphis' #NFStrong 5K for Neurofibromatosis

Sunday, November 10th

Memphis, TN

VIEW ALL UPCOMING EVENTS

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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."

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