Alstrom Syndrome International

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!!

10/07/2025

ONE week from tonight is our Trivia Night for a Cause! 🧠🎉

Grab the crew and join us for a fun-filled Pubguys Trivia Night, hosted by The Angry Irishman — all while supporting Alström Syndrome International. 💙

📅 Date: 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. 🌟 Who’s ready to play? 🙌

10/06/2025

We’re so excited to share that Novel Coffee Roasters has created a special blend inspired by our ASI mantra — “Drop by drop, we make a lake.” 🌊

Every purchase of their Drop by Drop Coffee directly supports Alström Syndrome International, with proceeds from each bag helping us continue our mission to support families, advance research, and spread hope.

✨ Huge thanks to the team at Novel Coffee for believing in our cause and helping fill our lake — one drop (and one cup!) at a time. ☕️

📦 Order Yours Here:
https://www.novelcoffeeroasters.com/collections/coffee/products/drop-by-drop

10/02/2025

We can’t wait!! 🎉 Have you marked your calendars?

MARK YOUR CALENDAR!

💙 OCTOBER 14th we come together for a cause! 💙

Join me at Cowtown Brewing Company as we support Alstrom Syndrome International, an incredible organization dedicated to helping those living with Alstrom Syndrome and their families. Your presence, donations, and support will make a real difference. Let’s show love for our friends, families, and communities affected by this rare condition!

Now, let’s turn this night of giving into a night of fun:
🎉 Pubguys Trivia – Special Charity Edition 🎉
📍 Cowtown Brewing Company
🕖 Game Time: 7pm – 9pm
✅ FREE to play
📝 6 rounds, 5 questions each + bonus questions
👥 Teams of 1–8 players
🏆 Prizes for the top 2 teams
🎁 Extra prizes for those who donate to Alstrom Syndrome International

And of course…
🍖 Outpost36 Texas BBQ serving up amazing eats
🍺 Cold Cowtown brews to keep you fueled

So come early, grab your table, order some great food, and get ready for One Crazy Game of Trivia—all while supporting a truly worthy cause. Mark your calendar and I will see you October 14th at Cowtown Brewing Co. for this special event!

Slainte Mhath,
The Angry Irishman (with a heart)

09/24/2025

Recent research shows that people with Alström Syndrome may experience a decline in mitochondrial function—a critical finding since mitochondria are the powerhouses of our cells. 💪 🧬

In a study comparing muscle tissue between ALMS patients and healthy individuals, researchers found that those with Alström had consistently lower oxidative phosphorylation, meaning their cells produced less energy overall.

This reduced energy could explain some of the chronic fatigue, lower muscle tone, and metabolic irregularity in Alström, while also pointing researchers toward new ways to support cellular health as part of a comprehensive approach to Alström Syndrome care and treatment.

📚 Read more here: https://pmc.ncbi.nlm.nih.gov/articles/PMC11453662/

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09/22/2025

Last week to register for the 2nd Annual ASI Family Retreat in Fort Worth!! 💙🤠 This exclusive event only has a few spots left—make sure you’re joining us!!

Spend the weekend connecting with other ASI families and enjoying lots of fun here in Fort Worth! ✨

📅 October 23-26, 2025
📍 Fort Worth, Texas

Deadline to register is September 30th, so don’t miss out! Space is limited—only a few spots left to attend! Message us with any questions you have! We can’t wait to see you soon!!

💻 Registration Link: https://alstrom-syndrome-international.givecloud.co/asi-2026-family-retreat-oct-23-26-fort-worth-tx-usa

🤠 Hotel Booking: https://www.marriott.com/event-reservations/reservation-link.mi?id=1752863609356&key=GRP&app=resvlink