NF Network News - June 2024

Inaugural Awardee of the NF Network Research Program, Project Dream

The NF Network is proud to announce the awardee of the first year of funding of the NF Network Research Program, Project Dream. This new program is dedicated to providing hope for individuals living with NF by stimulating innovative research. Our Scientific Advisory Committee, (SAC) chaired by Justin Jordan, M.D., M.P.H., has provided expert guidance in assessing and recommending proposals for funding. The inaugural awardee of Project Dream is Dr. Thomas Wilson, Standford University - “Identification of Painful Peripheral Nerve Sheath Tumors using Sigma-1 Receptor Radioligand and PET/MRI”. Read more

Decoding NF: Strategies for Living with Chronic Pain

Join host Shane Smith as he interviews Dr. Frank Buono and they discuss Dr. Buono's pioneering research on pain management, including pain management strategies, importance of mindfulness and a multidisciplinary approach to treatment.

Seeking participants for NF1 study of how cutaneous neurofibromas form

The Neurofibromatosis Therapeutic Acceleration Program (NTAP) at Johns Hopkins University seeks participants study that will use a specialized 3D photography system to take whole-body pictures once a year for up to five years to track the progression of cutaneous neurofibromas (cNF) over time.

Stay #NFStrong This Summer!

#NFStrong events take place in cities and communities across the country. Learn more about our first Ducky Dash in May, our ongoing #NFStrong 5K's, and how you can get involved this summer and fall!

Henry Ford Health works to raise neurofibromatosis awareness

The Gilbert Family Foundation and Henry Ford Health are working together to learn more about neurofibromatosis to help patients like Tracy Irby. Neuro-oncologist Dr. Tobias Walbert believes the work that will take place at the Nick Gilbert Neurofibromatosis Research Institute will open new doors for patients living with NF.

Upcoming Events

THIS WEEKEND!

Boardman's #NFStrong 5K for Neurofibromatosis

Saturday, June 29th

Boardman, OH

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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