Alstrom Syndrome International

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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 physicians 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/

11/28/2025

Doing some Black Friday shopping? Don’t forget your ASI holiday merchandise, too!! Help make the season a little brighter, cozier, and full of rare-disease pride! ❄️💙

From festive gear to meaningful gifts that give back, every purchase helps support the Alström community and fuels our mission.

✨ Shop for yourself. Shop for someone you love. Shop for a cause. Your holiday gifts can make a real impact this year!

Browse the Holiday Collection at the Shop Link in our bio!! 👆

11/27/2025

Today, we’re especially grateful for the incredible strength, resilience, and heart of the Alström community. Whether you’re gathering with loved ones, connecting from afar, or enjoying a quiet moment today, please know how thankful we are for YOU.

To our families, clinicians, researchers, supporters, and friends—thank you for all you do to make this community stronger, brighter, and full of hope.

Happy Thanksgiving from ASI! We’re wishing you a day filled with warmth, love, and gratitude. 🍂🦃🧡

11/26/2025

Our Annual Fund Drive is officially underway!
Check your mailbox for your letter and a fun ASI Highlights flyer!! ✨

This past year has been full of progress, partnership, and powerful moments for our Alström community. None of it would be possible without supporters like you. 💙

As we look ahead to 2026 and our upcoming Family Conference next May, your generosity helps fuel research, family support, education, and hope for everyone living with Alström Syndrome.

If you’re able, please consider making a gift today. Every dollar truly makes a difference. Together, drop by drop, we make a lake…and are building a brighter future.

👉 https://www.alstrom.org/?give=PYEVM6DX

Thank you for being part of the ASI family! 💙🌟

11/11/2025

Today, we pause to honor the courage, dedication, and sacrifice of all who have served our country. 🇺🇸 Your bravery protects the freedoms we hold dear—and for that, we are forever grateful.

From all of us at Alström Syndrome International, thank you for your service and commitment. 💙

11/10/2025

Dust off your boots and join us for Alström Syndrome International’s 𝘽𝙤𝙤𝙩𝙨 & 𝘽𝘽𝙌 𝙁𝙤𝙧 𝙖 𝘾𝙪𝙧𝙚 Fundraiser & Silent Auction, upcoming on Rare Disease Day!

🤠 February 28, 2026
🍷 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://lp.constantcontactpages.com/ev/reg/9sqb7pw/lp/9303dce5-c900-459d-bdf7-af53724c13ef

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

10/31/2025

Happy Halloween from ASI! 🎃 Wishing all our Alström kiddos, families, and friends a night full of costumes, candy, and giggles!

Have fun, stay safe, and show off your spook-tacular smiles and costumes in the comments below! 👻

10/28/2025

What an unforgettable weekend in Fort Worth! 💙
Our ASI Family Retreat brought together 6 amazing families for a sneak peek of what’s to come at our 2026 ASI Family Medical Conference & Scientific Symposium!!

The weekend was complete with the Stockyards, pumpkin painting, laughter, and plenty of connection and community. 🎃🤠 It was a beautiful reminder that while Alström Syndrome may be rare, this community is mighty. 💪

Shoutout and big thank you to our friends at Chick-fil-A South Burleson for donaing lunch on Saturday!

We can’t wait to welcome even more families back to Fort Worth in May for the conference! 🌵

10/27/2025

Spots are filling fast for the 11th Alström Syndrome International Family Conference & Scientific Symposium in May 2026! Join us in Fort Worth, TX for meaningful moments, inspiring conversations, and time with the Alström community from around the world. 🌍💙

✅ Registration and hotel booking are still open!
Secure your place today and start your countdown to Fort Worth, Texas!

📅 May 21, 2026 at 6pm to May 25, 2026 at 10am
📍 Fort Worth, TX
💙 Registration: https://tinyurl.com/ASIConference11
🤠 Hotel: https://tinyurl.com/ASIConferenceHotel

**𝘗𝘭𝘦𝘢𝘴𝘦 𝘕𝘰𝘵𝘦: 𝘝𝘢𝘭𝘦𝘵 𝘱𝘢𝘳𝘬𝘪𝘯𝘨 𝘳𝘢𝘵𝘦𝘴 𝘯𝘰𝘵 𝘪𝘯𝘤𝘭𝘶𝘥𝘦𝘥 𝘪𝘯 𝘳𝘰𝘰𝘮 𝘱𝘳𝘪𝘤𝘦. 𝘈𝘤𝘤𝘦𝘴𝘴𝘪𝘣𝘪𝘭𝘪𝘵𝘺 𝘪𝘯𝘧𝘰 𝘤𝘢𝘯 𝘣𝘦 𝘧𝘰𝘶𝘯𝘥 𝘢𝘵 𝘵𝘩𝘦 𝘦𝘯𝘥 𝘰𝘧 𝘵𝘩𝘦 𝘣𝘰𝘰𝘬𝘪𝘯𝘨 𝘭𝘪𝘯𝘬.

10/24/2025

Throwback to last Thursday, because what a night! 🎤 A huge THANK YOU to everyone who joined us for ASI Trivia Night — for bringing your energy, laughter, and big brains to the table! 💡🧠

Shoutout to our hosts, The Angry Irishman and Cowtown Brewing Company, for partnering in this amazing night!

Because of your support, we raised funds that will go directly toward conference expenses for our ASI Family Conference & Scientific Symposium this next May 2026 in Fort Worth, Texas.

Every question answered and every team that played helped us take another step toward bringing our global Alström community together. 💙 ✨ We couldn’t do it without you!

10/22/2025

We’re gearing up for the 11th Alström Syndrome International Family Conference & Scientific Symposium next May in Fort Worth, Texas — and we’re looking for amazing partners to join us! 🤝

Your sponsorship helps us bring families, researchers, and clinicians together to advance understanding, share hope, and strengthen our rare disease community. 💙

✨ Interested in sponsoring? Send us a message OR email Rocky.Tucker@alstrom.org for more information on how you can make a lasting impact and help create an unforgettable conference experience.

10/15/2025

Today we’re celebrating the independence, confidence, and mobility that the white cane represents for individuals who are blind or low vision—including many in our Alström community. 💙

Rocky Tucker, ASI Executive Director, and Tiffany Felgar, ASI Administrative & Fundraising Coordinator, attended the North Texas White Cane Safety Day in downtown Ft. Worth.

They were inspired by speaker Michael Hingson, who, with the help of his loyal guide dog, bravely made his way down from the 78th floor of the World Trade Center on that fateful day. Truly Amazing!

Let’s continue to spread awareness, promote accessibility, and honor the strength and resilience of those navigating the world with courage and grace. 💪✨

10/14/2025

Join us tonight for Trivia Night for a Cause! 🧠🎉

You don’t want to miss this night of great food, drinks and fun with Pubguys Trivia Night, hosted by The Angry Irishman — all while supporting Alström Syndrome International. 💙

📅 Date: TONIGHT, Tuesday, October 14
📍 Location: Cowtown Brewing Company
⏰ Time: 7-9pm
🍗 Great food from Outpost 36 Texas Barbeque

Your night of fun helps fund research, support families, and spread hope. 🌟 We can’t wait to see you tonight!!

Address

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

Website

https://www.alstrom.org/

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