A "New Era" in Treating NF1 Plexiform Neurofibromas
—3 min read —By Titan Dispatch
AI-assisted summary, read by Lewis Prep staff before publishing. Every claim links to its original source below.
At a September clinical forum, doctors described how FDA-approved MEK inhibitors are changing care for NF1 plexiform neurofibromas, and the awareness gaps that remain.
Neurofibromatosis type 1 (NF1) is a genetic condition that can cause tumors to grow along nerves. One type, called plexiform neurofibromas (PN), can grow into surrounding tissue and cause pain and other problems.
On September 17, 2026, NeurologyLive hosted a clinical forum in Philadelphia called “Recognizing and Treating Plexiform Neurofibromas in NF1: A New Era of Systemic Management,” moderated by Dr. Jessica D. Schulte of NYU Grossman School of Medicine.
Why surgery isn’t the whole answer. Because PN grows into nerves and nearby tissue, removing it completely is almost never possible, and tumors that are partly removed can grow back. “It’s not a forever solution, and it will continue to grow back over and over again,” Dr. Schulte said.
Medicines are now central. Two MEK inhibitors, selumetinib and mirdametinib, have each received FDA approval for symptomatic PN that can’t be operated on. In one case presented, a patient saw a 24% reduction in tumor volume at 12 months, along with better quality of life. Dr. Schulte noted that pain can improve within weeks, while changes in tumor size can take close to eight months to show.
The gap that remains. Most clinicians at the forum relied on informal referrals rather than a formal NF1 care team, and in one poll 66% said uncertainty about which patients to treat was their biggest barrier to prescribing or referring, ahead of insurance and access issues.
What it means for families: if someone in your family lives with NF1, ask their doctor whether a referral to an NF specialty clinic makes sense, and what treatment options exist today.
At Lewis Prep, NF research matters to us. Our school is named in honor of Letta K. Lewis, and the Letta K. Lewis Foundation supports NF research and patient advocacy. Learn more at lettasfight.org. #lettasfight #sports4NF
This post is general information, not medical advice. Talk with your doctor about any health decisions.
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