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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Recently, I traveled to Washington, DC to speak with offices from the House and the Senate about the importance of NF re...
11/16/2025

Recently, I traveled to Washington, DC to speak with offices from the House and the Senate about the importance of NF research and the impact it makes. NF affects the lives of constituents in every state and every district accross the US.
This photo was taken on the balcony of office after we met with him. It is always a great pleasure to meet with Representative McGovern and his office.
I also had the opportunity to meet with office and many others. So thankful for the NF Young Adult Mentorship Program that is put on by . Without this program, none of this would be possible! I can't wait to come back soon!

Recently I was sent these patches by and I really like them! I've been super busy lately between work, disaster respons...
08/19/2025

Recently I was sent these patches by and I really like them! I've been super busy lately between work, disaster response, and volunteering as a street medic.

As y'all know, I've got lots of chronic pain problems, especially in my back! I've been testing out these arnipatches by LaboFlex recently and they've been coming in handy! They are homeopathic with Arnica Montana 1X HPUS 1% being the active ingredient. I love that they are sticky and have a stretch to them! This allows them to stick to my back while I am still up and moving around. Some patches have no stretch and do not stick well so they fall off immediately. I haven't had this problem with these making them super handy! I also love the packaging. They come in resealable envelopes that are easy to open. No scissors needed! I also love that they do not have a strong smell. I have loved adding these to my rotation and having a homeopathic option to use! These are definitely a great addition to my collection!

I was generously gifted these for free but I am not being paid to review these and will receive no compensation if anyone buys them. This is a genuinely honest and unbiased review.

Included are pictures of the box, the envelope they come in, and my hand holding a patch for size reference. I want this to sound in my voice and be appropriate for my NF awareness page.

I know I said I’d be more active here... but life happened.In case you didn’t know, I’m based in Central Texas, and sinc...
07/24/2025

I know I said I’d be more active here... but life happened.

In case you didn’t know, I’m based in Central Texas, and since the catastrophic flooding over July 4th weekend, I’ve been busy with disaster response. Aside from a couple of appointments last week, every waking moment has been spent in response mode.

Yesterday was a huge moment! The Conservation and Disaster Crew received a Certificate of Appreciation from .

We’ve been boots on the ground since around July 11th, supporting response efforts after the Central Texas floods. Our main role has been donations management. We've intaking, sorting, processing, and distributing items to meet urgent community needs.

helped us get set up and supported us in our warehouse. Yesterday was their last day with us, and they surprised us with this recognition!

While they’ve moved on to other community needs, our crew is still on site keeping things going.

Working in a warehouse in the Texas heat is no joke 🔥 but this team shows up every single day with passion and dedication. This work may be behind the scenes, but it’s so important. I couldn’t be prouder. Donations is often considered a disaster within a disaster because they can quickly overwhelm an area if there aren't support systems in place. I'm beyond proud of my team! Thank you!

It's ok to take a day to rest if you need it! Rest is important too.Take care of yourself and your needs. You cannot pou...
07/08/2025

It's ok to take a day to rest if you need it! Rest is important too.
Take care of yourself and your needs. You cannot pour from an empty cup, so do the things you need to do to fill you cup.

I know a lot of people in my area are eager to help with the recent floods. There is a lot of asks for volunteers and hands on work. There may be a lot of pressure to give your all then give more. But remember to take care of you too. You need rest! Resting is something that everyone needs and is never a sign of weakness. So these coming weeks and forever forward, remember to take your time and rest.

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