Alstrom Syndrome International

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Burleson, TX
Alstrom Syndrome International

To provide support, information, & coordination
worldwide in order to treat and work to cure Alstrom.

Our mission is to provide support, information, and coordination
world-wide to families and professionals in order
to treat and cure Alström Syndrome. Alström Syndrome International is a 501 (c) (3) registered charity. ASI develops, maintains, and manages the largest Alström Syndrome clinical database in existence, conducts international family conferences, and consults with researchers and physic

ians at hospitals and institutes for an updated medical opinion. Alström Syndrome is a rare genetic disease that affects many parts of the body. Alström Syndrome can affect every organ and cell in the body. Alstrom symptoms can include problems with vision, hearing, stature, heart, liver, kidneys, and often Type 2 diabetes. For more information on Alström Syndrome please visit https://www.alstrom.org/what-is-alstrom-syndrome/

For more information about Alström Syndrome International or Alström Syndrome please visit the website at: https://www.alstrom.org/about-asi/

09/07/2026

Today, we’re taking a moment to celebrate the people who work hard, give back, and make a difference in their communities. 💪

Wishing our ASI families and friends a relaxing Labor Day filled with sunshine, family, and a little extra time to enjoy the things you love! 💙✨

09/02/2026

It’s been a minute since our last Science Spotlight, so let’s get back to the research!

Researchers use mouse models to better understand what happens when the ALMS1 gene isn’t working properly. These models can develop features that are also seen in people with Alström Syndrome, including obesity, insulin resistance, vision changes, hearing loss, and other metabolic complications.

By studying these mice, researchers can investigate why these changes happen, better understand the role of ALMS1, and explore potential treatments — work that can ultimately help move Alström research forward.

🔬 One small mouse, one big step toward understanding Alström. 💙

Want to learn more? Check out this research on an Alms1-deficient mouse model:

🔗 https://pubmed.ncbi.nlm.nih.gov/16516152/

08/28/2026

Meet Colin—an Alström warrior who’s living life to the fullest, and making sure others can do the same! 👏

Despite being legally blind, Colin joined a rock-climbing gym within walking distance of his home. But getting there meant navigating a complicated five-way intersection that made crossing safely a challenge. 😰 Instead of letting that stop him, Colin spoke up so he (and others!) can now navigate that intersection with greater confidence. 💪

We love how Colin encourages everyone to put theirselves out there and be adaptable! 💙 Read more about Colin’s story and how he’s encouraging others to do the same: 👇

https://www.clevelandsightcenter.org/about-cleveland-sight-center/news/success-stories/meet-colin

08/26/2026

Happy National Dog Day! 🐾💙

Our ASI family has plenty of furry friends who bring the extra support, love, laughter, and companionship into our lives every day. 💙

📸 Drop a photo of your four-legged family member in the comments—we want to see those sweet faces! 🐾

08/20/2026

Hey ASI Family—don’t forget we’ve launched the Alström Syndrome Data Collection Program, in partnership with RARE-X, a program of Global Genes! 🧬 🔍

So, what does that mean for our families? 🤔 When individuals and families participate, the information they share helps researchers better understand Alström Syndrome, identify patterns, and advance research toward new treatments and therapies.

The more we learn together, the more we can help researchers answer important questions about Alström Syndrome. 💙 Your data is invaluable—and every contribution brings us one step closer to better understanding and a cure.

Learn more about the program and how you can participate:

👉 www.alstrom.org/rarex-asi

08/19/2026

Whew, Southern friends…how are we holding out in this extreme heat?! 🥵🔥

If you’re going to sweat, you might as well do it in style! 😎🧢 Grab yourself (and the whole family) an ASI ballcap from our merch store and show your Alström pride wherever you may be in the heat! 💙

👇 Shop here:
https://esixsportswear.com/alstrom/shop/home

08/11/2026

It’s Back to School season, ASI Family! 🎒📚 New backpacks, fresh school supplies, big smiles (and maybe a few happy tears! 😉).

Whether your kiddos are heading off to their first day, starting a new grade, or taking on a whole new adventure, we want to see those back-to-school smiles! 💙

📸 Drop your 1st Day of School or Back to School photos in the comments and let’s fill our feed with the amazing faces of our ASI family!

Wishing all our students, parents, teachers, and school teams a wonderful year ahead! ✏️🍎✨

08/04/2026

Bringing Patient Voices to the Table! 🧬

This past weekend, our Executive Director, Rocky Tucker, and our Science Associate, Katelyn Wo, represented Alström Syndrome International at the FASEB Ciliopathy Summit in Washington, D.C.!

The summit brought patient advocacy organizations and researchers together to share knowledge, build connections, and advance understanding of ciliopathies. We were honored to attend alongside Federation of American Societies for Experimental Biology - FASEB ciliopathy organizations from the Rare as One Network cohort through CZI.

A huge thank you to Biohub and FASEB for creating this opportunity to bring researchers and patient communities together. We’re grateful to have Alström families represented in these important conversations and excited to continue building connections that move research forward! 💙

07/04/2026

Happy Fourth of July from ASI! ❤️🇺🇸

Wishing our ASI families and friends a fun, safe, and joyful Independence Day filled with laughter, celebration, and time spent with those you love.

📸 Share your Fourth of July photos in the comments below—we can't wait to see how our ASI family is celebrating across the country! 🎆💙

06/21/2026

Happy Father’s Day! 💙 Today, we celebrate the amazing dads, grandfathers, and father figures in our ASI community.

Thank you for your love, strength, support, and advocacy. The impact you make on your families each and every day is immeasurable, and we are so grateful for all that you do.

Wishing you a day filled with love, laughter, and special moments with those who matter most. 🥰

Address

251 SW Wilshire Boulevard #124/304
Burleson, TX
76028

Website

https://www.alstrom.org/

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