NF1-TED Study Needs Participants!

I Just Joined the NF1-TED Study — and You Might Want To, Too

I recently enrolled in the NF1 Tumor Early Detection (TED) Study. It was easy, and it feels really good knowing I’m helping move NF research forward.

This study is trying to answer a big question: Can a blood test detect malignant peripheral nerve sheath tumors (MPNSTs) earlier than current methods? If the answer is yes, it could be a game-changer for early diagnosis and better outcomes for people with NF1.

Here’s what you need to know:

• The study is for adults (18+) with a history of plexiform neurofibromas
• It lasts five years, but participation is simple
• You give a blood sample every six months
• You complete short questionnaires every three months
• That’s it…no travel, no complicated procedures

Here’s what it looked like for me:
After enrolling online (which was quick and painless), a blood collection kit was shipped to my house. I scheduled a quick appointment at a local lab to get my blood drawn, and the lab handled the shipping. My insurance wasn’t billed, and I didn’t pay a dime. On the day of the blood draw, I got a short questionnaire to fill out, and I’ll keep getting those every few months.

It even pays participants, which is a nice bonus, but honestly, that’s not why I joined. I believe that participating in studies (no matter how big or small) is one of the most powerful ways we can help improve the future for people with NF. For myself. For my friends. For future generations.

The TED Study is not a big time commitment, but the potential impact? Massive.
We need studies like this to find better tools, earlier diagnoses, and better outcomes, but they only move forward when people show up and participate.

If you’re eligible, I really hope you’ll consider joining. And if you’re not, you can still help by sharing this opportunity with others in the NF1 community.