Sidney's NF Story

Sidney's NF Story Howdy! My name is Sidney and I have Neurofibromatosis Type 1 (NF1). NF is a group of rare genetic disorders that causes tumors to grow all throughout the body.
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Please join me in my journey of spreading awareness and telling my story!

The House of Representatives has passed the most recent version of FY26 Defense funding bill, and it includes 25M for NF...
01/20/2026

The House of Representatives has passed the most recent version of FY26 Defense funding bill, and it includes 25M for NF Research in the NFRP through the CDMRP. This is a major victory for the NF community after funds were cut for FY25.

This still has to be passed by the House and the Senate and signed by the President into law. We are not across the finish line yet but this is a major step forward. I am beyond grateful for all the advocates who told their story to make this possible. I am so beyond PROUD of all the NF Young Adults who traveled to DC to tell their story and make their voices heard. Your voice matters! Your story matters!

I will keep y'all updated! Follow Littlest Tumor Foundation Texas Neurofibromatosis Foundation Children's Tumor Foundation for the latest updates.

01/20/2026

The House of Representatives has passed the latest version of FY26 Defense funding bill, and it includes 25M for NF research.

January 20, 2026 — The Senate and House of Representatives Committee on Appropriations has released the final negotiated agreement for the Fiscal Year 2026 Defense spending bill – and we are pleased to report that it includes $25 million in funding for the Neurofibromatosis Research Program (NFRP) through the Congressionally Directed Medical Research Program (CDMRP). This bicameral, bipartisan agreement represents a major victory for the NF community.

We’re not across the finish line yet. The package containing the Defense bill still must pass the full House and Senate and be signed by the President before becoming law. But today, we’re grateful for this momentum and for every advocate who helped make it possible.

After NF research funding was unexpectedly cut in Fiscal Year 2025, this is a hard-earned step forward. The agreement announced today is a direct result of this community’s efforts.

We’ll keep you updated as the process continues. Thank you for your continuing efforts and for standing with us every step of the way.

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing tha...
01/12/2026

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has"
-Margaret Mead

This last week was incredible! I am so blessed to be a part of such an incredible program and I am beyond proud of this year's young adults! Y'all did an amazing job and I know you made a huge impact.

Thank you to for putting on an amazing program! I wouldn't be where I am today without y'all!

Huge shout out to for giving me 1,000 stickers! I originally set a goal of giving out 1,000 stickers in the year 2026 t...
01/01/2026

Huge shout out to for giving me 1,000 stickers! I originally set a goal of giving out 1,000 stickers in the year 2026 to spread awareness for Neurofibromatosis. But due to their incredible contribution, I am able to up that goal to 2,000 stickers! 2,000 for the 1 in 2,000 people born with Neurofibromatosis. So blessed to have their incredible support!
Let me know if you want a sticker!

Yesterday I hit 200 sticker packs made! I can't wait to see them all distributed!
12/31/2025

Yesterday I hit 200 sticker packs made! I can't wait to see them all distributed!

If someone were to tell you they just got diagnosed with a condition you have, what would you tell them? What do you wis...
12/31/2025

If someone were to tell you they just got diagnosed with a condition you have, what would you tell them? What do you wish someone told you? Let's share our experiences, advice, and support each other!
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