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In The News

SpringWorks Conducting Several Studies with MEK Inhibitor, Mirdametinib

SpringWorks Therapeutics is conducting a clinical trial to study an investigational MEK inhibitor called mirdametinib in people with a plexiform neurofibroma (PN) associated with NF1. The study, called the ReNeu trial, is currently enrolling people ages 2 to 17. The purpose is to determine the effectiveness of mirdametinib at improving a PN that is causing significant issues in people with NF1.

Research

Mouse Study Reveals Rare Genetic Disorder May Be Improved by Hypertension Drug

NF2 is a hereditary condition most commonly associated with bilateral vestibular schwannomas (VS), also known as acoustic neuromas. Although these tumors are benign, they can cause hearing and balance problems. Now, a mouse study by scientists at Massachusetts General Hospital (MGH) and Massachusetts Eye and Ear reveals that the blood pressure drug, losartan, may benefit patients with NF2.

Event Highlight

"Simpler Times:" A Letter on Links for Lauren

COVID has forced us all to adapt to our new world, but for those of us affected by NF, it’s a reminder that NF didn’t take a vacation from our everyday lives. As a father of an 11-year-old daughter with NF1, Ryan Geier shares how a longing feeling for “simpler times” is always present and how that played a role in their annual charity golf outing, Links for Lauren.

People Spotlight

Girl with prosthetic leg has special connection to Winter the dolphin

Ayden Wagler, recipient of the Paul Bodner Memorial Award at Chicago's 2nd Annual NF Hope Concert, shares a special connection with Winter the dolphin. In a recent trip to Florida, Ayden was given a special tour of Clearwater Marine Aquarium and shared how her story and Winter's are quite similar.


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