Alstrom Syndrome International

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/

With our ASI Family Conference & Scientific Symposium coming up soon, we’re busy preparing for an incredible week of con...
03/12/2026

With our ASI Family Conference & Scientific Symposium coming up soon, we’re busy preparing for an incredible week of connection, learning, and community.

To help make the experience even more welcoming and comfortable for our families, we’ve created an Amazon Wishlist with items needed to keep those kiddos having fun and safe during the conference.

If you’d like to support in a simple way, we’d be so grateful for anything you’re able to contribute! 💙 Every item helps us create a warm and supportive space for our ASI families and guests.

🛒 Check out the wishlist here:
https://tinyurl.com/ASIconferencewishlist

Silent Auction Countdown! ⏰ Only a few hours left to make your bids count—and so many great items up for grabs!! ⏳Every...
02/28/2026

Silent Auction Countdown! ⏰ Only a few hours left to make your bids count—and so many great items up for grabs!! ⏳Every bid supports families and research in the Alström Syndrome International community. 💙

🕙 Auction closes at 8:30pm (CST) TONIGHT—get those final bids in before it’s too late!

🛍️ Bid here:

https://events.readysetauction.com/alstromsyndromeinternational/asifundraiserdinner

⏳ Still time to get your bids in! Our Boots & BBQ Silent Auction closes TOMORROW night at 8:30 p.m. (Central Time)—so if...
02/27/2026

⏳ Still time to get your bids in! Our Boots & BBQ Silent Auction closes TOMORROW night at 8:30 p.m. (Central Time)—so if you’ve had your eye on something special, now’s the time to jump in! 💙

🛍️ Browse, bid, and share with family & friends!

https://events.readysetauction.com/alstromsyndromeinternational/asifundraiserdinner

From one-of-a-kind items to supporting a one-of-a-kind cause, every bid helps make a difference for the Alström community.

We’re so excited to have our friends from Kendra Scott joining us at the Boots & BBQ for a Cure Benefit Dinner this Satu...
02/27/2026

We’re so excited to have our friends from Kendra Scott joining us at the Boots & BBQ for a Cure Benefit Dinner this Saturday, February 28!! 💛

Even more exciting, we have a special necklace available just for ASI the next few days! ✨ Can't join us in person? You can shop online right here:

https://kgbtoalstromsyndrome.splashthat.com/

Shop the ASI necklace (and anything else on their website) using the code GIVEBACK-ASI26 while it's live February 26-28 and Kendra Scott will give back 20% of your purchase to ASI!

Our Alström Syndrome International Boots & BBQ Silent Auction is LIVE online!!! 💙 That means you can bid from anywhere N...
02/23/2026

Our Alström Syndrome International Boots & BBQ Silent Auction is LIVE online!!! 💙 That means you can bid from anywhere NOW—whether you're cozy at home or dressing up to join us at the benefit dinner on Rare Disease Day this weekend!!

🕙 Bidding is open NOW and closes the night of the dinner, February 28th at 8:30pm. (Central Time)

✨ Make sure you bid early, bid often, and support a great cause!

💻 Bidders must create a user account to participate.

🛍️ Bid here:
https://events.readysetauction.com/alstromsyndromeinternational/asifundraiserdinner

Today is the last day to purchase your tickets for our Boots & BBQ Benefit Dinner and receive an event t-shirt! 🤠🌵 Also,...
02/18/2026

Today is the last day to purchase your tickets for our Boots & BBQ Benefit Dinner and receive an event t-shirt! 🤠🌵 Also, last call for sponsorship logos to be on the back of the t-shirt! 😉

Don’t miss your chance to enjoy a night of great BBQ, live music, and community as we come together on Rare Disease Day to support families and research for Alström Syndrome.

🤠 February 28, 2026
🍷 Lost Oak Winery in Burleson, Texas!
🌵Dinner served at 6:30 pm
🎸 Live Music from Jesse Jennings

Grab your tickets now, dust the dirt off your boots, and make your plans to join us!! 💙 We can’t wait to see you there!

🎟️ Event details & ticket info in the link below:
https://tinyurl.com/ASIBootsandBBQ

✨ Interested in sponsoring? Please email us TODAY to reserve your sponsorship or get more details!

Sponsorship opportunities include perks like logo placement on event t-shirts (secured before 2/18), social media shoutouts, and more—check out the graphic for full details on each level.

All hearts matter, especially rare ones! 💙Wishing all of our sweet friends a day filled with love, laughter and a little...
02/14/2026

All hearts matter, especially rare ones! 💙

Wishing all of our sweet friends a day filled with love, laughter and a little extra sweetness!

The countdown is officially on, yeehaw!!! We’re just 99 days away from our ASI Family Conference & Scientific Symposium ...
02/11/2026

The countdown is officially on, yeehaw!!! We’re just 99 days away from our ASI Family Conference & Scientific Symposium in Fort Worth! 🤠💙

We’re excited to give you a sneak peek at our agenda, packed with meaningful sessions, connection time for families, and opportunities to learn from clinicians and researchers from around the world.

If you haven’t already, now is the time to register and make your travel plans. We can’t wait to come together for an unforgettable week of community, education, and hope.

📅 May 21-25, 2026 | Fort Worth, TX
🔗 Find Conference details & Registration here:

https://www.alstrom.org/events/conference2026

We’re turning up the volume at our Boots & BBQ for a Cure Benefit Dinner on Feb. 28! 🤠🔥We’re thrilled to have Jesse Jenn...
02/10/2026

We’re turning up the volume at our Boots & BBQ for a Cure Benefit Dinner on Feb. 28! 🤠🔥

We’re thrilled to have Jesse Jennings bringing the live music for the night, setting the tone for dancing, celebrating, and kicking up our boots for a great cause.

Come ready for BBQ, boots, and a whole lot of fun as we dance the night away on Rare Disease Day — all in support of the Alström community. 💙

🎶 Live music by Jesse Jennings
👢 Boots encouraged
💃 Dancing guaranteed

Join us for a night of great food, western flair, and an even better cause!! Grab your tickets here:

🎟️ https://tinyurl.com/ASIBootsandBBQ

We’re incredibly grateful the Fort Worth Star-Telegram is shining a light on Alström Syndrome!! 🎉 👏 They’re highlighting...
02/03/2026

We’re incredibly grateful the Fort Worth Star-Telegram is shining a light on Alström Syndrome!! 🎉 👏 They’re highlighting our rare disease, sharing a piece of our story, and helping spread awareness about our upcoming Boots & BBQ for a Cure Benefit Dinner and the 2026 Alström Syndrome International Family Medical Conference & Scientific Symposium!!

While Alström Syndrome is rare, visibility matters. We hope this feature reaches someone nearby who may be searching for answers—and helps bring more awareness, understanding, and support to our community. 💪 Ultimately, every conversation and shared story brings us one step closer to a cure.

Thank you for helping shine a light on our rare disease and the families living with it every day. 💙

📰 Read the full article here:
https://www.facebook.com/share/p/1FBrBS4ty6/?mibextid=wwXIfr

Help make our Boots & BBQ for a Cure Benefit Dinner unforgettable!! 🤠🌵 We’re currently seeking event sponsors to help br...
02/01/2026

Help make our Boots & BBQ for a Cure Benefit Dinner unforgettable!! 🤠🌵 We’re currently seeking event sponsors to help bring this special Rare Disease Day celebration to life!

Sponsorship opportunities include perks like logo placement on event t-shirts (secured before 2/18), social media shoutouts, and more—check out the graphic for full details on each level.

🤠 February 28, 2026
🍷 Lost Oak Winery in Burleson, Texas!
🌵Dinner served at 6:30 pm
🎸 Live Music from Jesse Jennings

Your support helps fund research, family programs, and awareness for Alström Syndrome, and we couldn’t do it without partners like you. 💙

✨ Interested in sponsoring? Please email us today to reserve your sponsorship or get more details!

‼️ NOTE: 2/18 is the last day for sponsorships including tshirt logos!! Sponsorships secured after the deadline will not include logo placements.

Just want to attend the benefit? 🎟️ More event details & ticket info in the link below:

https://tinyurl.com/ASIBootsandBBQ

Address

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

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