The Children's Tumor Foundation
12/04/2025 | Press release | Archived content
Because of You, I Can Hug My Family AgainEmpty heading
Because of You, I Can Hug My Family Again
December 4, 2025Awareness, Top Story, Top Story EU
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Two women stand outside a building, smiling with arms around each other, both wearing matching shirts that say "I KNOW A FIGHTER.I'm living proof that the Children's Tumor Foundation changes lives. Without CTF-and without donors like you-the drug I depend on might never have existed. With it, I have hope.
Now I can hug my family again. It seems like a small thing, but it means everything.
My name is Samantha Pearson, and I want to tell you exactly what your year-end gift today at ctf.org/donate will mean for millions of patients living with NF, just like me.
I was diagnosed with neurofibromatosis type 1 (NF1) at 13, after years of unexplained pain and symptoms that went unrecognized. For a long time, I lived with constant, sharp pain that no one could explain. Something as simple as a hug from my family would bring tears to my eyes.
Then everything changed.
In 2020, I joined a clinical trial for a drug called mirdametinib. The side effects were tough at first, but I stayed with it-and it worked. My tumors shrank nearly 90%. My pain eased. And in February 2025, that same drug-now calledPerson smiling and giving a thumbs up in front of a wall sign that reads "Clinical and Translational Research Center. Gomekli-was approved by the FDA.
That breakthrough didn't happen by chance. CTF supported the research every step of the way-from funding the earliest discovery of the MEK pathway in NF, to backing the first test of MEK inhibitor drugs in patients.
But here's the truth: this drug almost never made it to patients.
A major pharmaceutical company was ready to walk away, preparing to shelve it. That could have been the end of the road. But the Children's Tumor Foundation stepped in-and refused to let it go.
CTF convinced them of the drug's value.
CTF helped transfer it to SpringWorks Therapeutics.
CTF helped recruit patients for the clinical trial.
CTF brought NF experts to the table to advise and support the trial's execution.
That's why I'm asking: will you make your most generous year-end gift today at ctf.org/donate? Thanks to the generosity of CTF donor Pat Spencer, your gift will be matched dollar-for-dollar, now through Dec. 31!
Your continued support ensures that CTF can keep fighting for the drugs others overlook, keep bringing doctors and companies together, and keep turning discoveries into treatments.
That's why I have Gomekli today. That's why patients like me finally have a second FDA-approved treatment for NF-and the first option for adults. That's why I can hug my family again.
All of this was made possible because of CTF-and because of you.
Your donations made this happen. You turned a nearly abandoned drug into a lifesaving breakthrough. You transformed scientific potential into a real treatment for patients like me.
A woman in a hoodie and glasses sits cross-legged on a hospital bed, holding a cup and snack, with medical equipment and personal items nearby.But we can't stop here. Gomekli is only the second drug ever approved for any type of NF. Other types of NF1 tumors still have no approved treatment. Too many patients living with NF2-related schwannomatosis, or other types of schwannomatosis, are still waiting.
Your support ensures that CTF can keep fighting for the drugs others overlook, keep bringing doctors and companies together, and keep turning discoveries into treatments.
Today, I'm in nursing school, inspired by my own journey and determined to help others. I still have goals. I still want to dance. And I want to be there for patients the way CTF was there for me.
Your support makes that possible-for me, and for every family waiting for their breakthrough.
With gratitude,
Samantha Pearson
Watch my short video here.
A woman stands smiling in front of the United States Capitol building with several people walking in the background on a cloudy day.P.S. Give today at ctf.org/donate and your impact will be doubled through Dec. 31, 2025. Pat Spencer, a dedicated supporter for over 29 years, is matching donations up to $50,000 in honor of her son and grandson, who live with NF1.
Offline gifts (checks, DAFs, wire and stock transfers) will be matched once received and verified. (Please note: personal fundraising pages are not eligible for the match.)
The Children's Tumor Foundation published this content on December 04, 2025, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on December 08, 2025 at 20:14 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]