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Join NF2-SWN Hero Addison in the fight to End NF

By December 7, 2021January 17th, 2024NF2-SWN

We are doing everything we can to fulfill our commitment to the CTF Discovery Fund, a promise to fund $3 million in research grants every year. We are still $1 million away from this vital goal, and we need your help.

With your contribution, we can advance the research and discovery that will generate improved treatments, improved care, and improved lives for people like three-year-old Addison (ppictured here with her mother, Amanda) who was diagnosed with NF2-SWN at just 16 months old.

NF2-SWN is usually discovered in a person’s teens or young adulthood, so it was very unusual for Addison to be diagnosed at such a young age. At just 10 months old, she had her first MRI that Christmas Eve, showing deficits in her right eye and a mass on the left side of her brain. She received her NF2-SWN diagnosis when she was only 16 months old.

Since her diagnosis, Addison has lost the function of her right eye and eyelid. She has at least one doctor appointment every month, and has an MRI every three months. Addison has a left-sided brain tumor which is inoperable. There are no treatments for her tumor besides radiation, which doctors won’t do on someone so young.

We don’t think anyone should have to face such life-threatening disorders only to be told there is nothing they can do. Together we can find direction and guidance for patients that will bring greater understanding of NF, and decidedly improved clinical care.

Your help will speed the path toward treatments for Addison and thousands more, who are desperately in need of approved treatments for their tumors. Please donate now at

“Addison is the most determined, strong, outgoing, crazy, caring, and smart little girl and I know she can handle whatever is thrown at her. But it’s hard for me to think about her future because all I can see right now is more doctors, imaging, and surgeries. Our family will do whatever it takes to raise awareness and money to find treatments and a cure for NF because Addison may be able to handle it, but I don’t know if I’ll be able to. She has a very large support group and we are here to help.”

– Amanda, Addison’s mother