Alstrom Syndrome International

10/22/2026

We’re excited to share that ASI is now a member of our local Chamber of Commerce! 🎉

We’re grateful for the opportunity to connect with our local community, build new relationships, and continue spreading awareness of Alström Syndrome. We look forward to getting involved and growing together! 🧬💙

Please join us in welcoming Alstrom Syndrome International to the Burleson Area Chamber of Commerce! ❤️

Did you know? Alström Syndrome is an incredibly rare genetic condition that can affect vision, hearing, heart health, and more.

We had the opportunity to visit with this incredible organization last month during Mr. Allard's special North Texas Giving Day podcast and learn more about their mission. We're proud to have them as part of our Chamber family!

Take a moment to learn more, give them a follow, and support their mission.

10/20/2026

Dust off your boots and mark your calendars!! Join us for Alström Syndrome International’s 2nd Anuual 𝘽𝙤𝙤𝙩𝙨 & 𝘽𝘽𝙌 𝙁𝙤𝙧 𝙖 𝘾𝙪𝙧𝙚 Fundraiser & Silent Auction!

🤠 February 20, 2027
🍷 Lost Oak Winery in Burleson, Texas!
🌸 Dinner served at 6:30 pm

Enjoy an evening of good food, music, company, and giving back—all to support individuals and families living with Alström Syndrome. Every ticket, bid, and donation helps us get one step closer to a cure. 💙

🎟️ Event details & ticket info in the link below:

🌸 https://tinyurl.com/bootsandbbq2027

Silent Auction will be available in person AND online. Stay tuned for more event details to come!

10/15/2026

Today we’re celebrating the 20th Anniversary of White Cane Safety Day! 🦯

The white cane represents so much more than mobility—it represents independence, confidence, and the freedom to navigate the world.

Today and every day, let’s promote awareness, accessibility, and respect for people who are blind or visually impaired, like many in our Alstrom Community! 💪💙

10/05/2026

Have you listened in yet?! 👀🎙️

We had so much fun chatting with Mr. Allard and shining a light on Alström Syndrome! 💙 If you haven’t tuned in yet, this is your sign! 🎧✨

Give it a listen, and let us know what you think! There might even be some exciting event info around 31:00min mark! 😉

09/29/2026

We had the honor of being guests on Mr. Allard's Neighborhood podcast today! 🎙️

We’re so grateful for the opportunity to shine a light on Alström Syndrome, help spread awareness about our rare disease, and share more about our amazing community!

🎧 Take a listen at the link below, share with friends, and help us send a huge thank you to Mr. Allard for having us on today! 👏 💙 We truly appreciate the opportunity to share our story!

🧬 youtube.com/live/1DLfECPKpQA?is=p19Qxr1ybzeDzLIY

09/17/2026

Today, we’re recognizing World Patient Safety Day and reaffirming our commitment to a world where people living with complex medical diagnoses receive safe, equitable, and informed medical care. 🧬

For the Alström community, patient safety means greater awareness, better communication, coordinated care, and healthcare providers who understand the unique needs of our rare disease patients. 💙

09/11/2026

A few days in Boston well spent! 💙

Our ASI team was honored to attend the Global Genes Rare Drug Development Symposium, connecting with fellow rare disease advocates and gathering valuable information about what’s ahead for our community—including clinical trial readiness, drug development, and potential pharmaceutical partnerships.

We’re grateful for the conversations, collaboration, and continued reminder that we’re stronger when we work together. Together, we keep moving research, support, and hope forward! 🧬✨

_rare.x_

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