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Home is Where the Heart Is: Michele Holbrook

By December 29, 2020December 4th, 2023Story of NF, SWN

In April 2020, NF patients and families received the news of a lifetime — the United States Food and Drug Administration (FDA) announced the approval of Koselugo (selumetinib). Finally, for the first time ever, there is an FDA-approved drug treatment for some patients living with NF.  Early-stage discoveries from Children’s Tumor Foundation-funded researchers proved that MEK inhibitor drugs have the potential to affect the size of NF tumors, bringing us to this moment. More than 70% of NF patients taking selumetinib in a clinical trial had shrinkage of 20 to 60% in the size of their tumors. 

While Koselugo has helped many patients living with inoperable plexiform neurofibromas, it does not help all patients living with NF. Patients like Michele Holbrook, who has schwannomatosis, and are still waiting for breakthroughs in drug development and FDA-approved treatment options. SInce first being diagnosed at age 25, Michele has had roughly eight surgeries, plus radiation, and lives with excrutiating pain every day of her life. Watch this video to hear Michele talk about living with schwannomatosis:




Koselugo (selumetinib) is approved only for NF1 patients with inoperable plexiform neurofibroma tumors. But the devastating effects of NF go far beyond this type of NF, and far beyond this one type of NF tumor. There is still no approved treatment option for NF patients with disfiguring cutaneous neurofibromas, life-threatening meningiomas, or painful schwannomas. We cannot stop until there are FDA-approved treatments for all forms of neurofibromatosis – NF1, NF2, and schwannomatosis.

Through the end of the year (December 31, 2020), every donation made at will be matched dollar for dollar. Help us help more NF Heroes like Michele.