Alstrom Syndrome International

Home
United States
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 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/

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

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

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

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

01/26/2026

Here to check in on our ASI Family & Friends as the Arctic blast has been making its way across the country!! ❄️🥶

If you’re getting snow, ice, or extra-chilly temps, we’d love to see how you’re making the most of it! Drop any of winter fun photos (or cozy indoor moments) in the comments below. 👇📸

Sending warm wishes to everyone! 💙 Stay warm, cozy, and safe!!

01/19/2026

Today, we honor the life and legacy of Dr. Martin Luther King Jr., whose words and actions continue to remind us of the power of compassion, unity, and service to others.

At ASI, we’re inspired by his vision of working together to create a more just, hopeful future—one where every voice matters and every life is valued. 💙

“Everybody can be great…because anybody can serve.” - Dr. Martin Luther King Jr.

01/16/2026

As we step into a brand new year, one thing remains constant—the strength, compassion, and connection of our amazing Alström community. 💙

From families and clinicians to researchers and supporters around the world, this community continues to show up, lift one another, and move us forward together. 💪 👏

We’re so grateful for each of you and excited for all that’s ahead in the year to come. 🎉 Make sure you're following along for exciting things ahead, like our 𝘯𝘦𝘸 𝘸𝘦𝘣𝘴𝘪𝘵𝘦!!!

So much more to come! ✨👀 Stay tuned!

01/13/2026

Thanks to the incredible generosity of our community, our Year-End Goal for the Fund Drive closed out the year with 𝙩𝙧𝙪𝙡𝙮 𝗔𝗠𝗔𝗭𝗜𝗡𝗚 𝗺𝗼𝗺𝗲𝗻𝘁𝘂𝗺—𝗿𝗮𝗶𝘀𝗶𝗻𝗴 $𝟵𝟮,𝟬𝟬𝟬!! 💙👏 🎉

Your support helps fuel research, supporting families, advocacy, and the continued growth of our global Alström community. And we’re just getting started!

With a new year ahead and our annual benefit coming up in February, we’re excited to keep the energy going and continue building toward a brighter future for those living with Alström Syndrome. ✨ 𝙎𝙤 𝙢𝙪𝙘𝙝 𝙢𝙤𝙧𝙚 𝙩𝙤 𝙘𝙤𝙢𝙚. 𝙏𝙝𝙖𝙣𝙠 𝙮𝙤𝙪 𝙛𝙤𝙧 𝙗𝙚𝙞𝙣𝙜 𝙥𝙖𝙧𝙩 𝙤𝙛 𝙚𝙫𝙚𝙧𝙮 𝙨𝙩𝙚𝙥 𝙛𝙤𝙧𝙬𝙖𝙧𝙙.

And with your continued support, we’re setting our sights on 𝙧𝙚𝙖𝙘𝙝𝙞𝙣𝙜 $𝟭𝟮𝟱,𝟬𝟬𝟬 𝙗𝙮 𝙩𝙝𝙚 𝙍𝙖𝙧𝙚 𝘿𝙞𝙨𝙚𝙖𝙨𝙚 𝘿𝙖𝙮 𝙖𝙩 𝙩𝙝𝙚 𝙚𝙣𝙙 𝙤𝙛 𝙁𝙚𝙗𝙧𝙪𝙖𝙧𝙮—help us keep the momentum going! 💪

01/06/2026

ASI’s 𝘽𝙤𝙤𝙩𝙨 & 𝘽𝘽𝙌 𝙁𝙤𝙧 𝙖 𝘾𝙪𝙧𝙚 Fundraiser & Silent Auction is just around the corner on Rare Disease Day! Are you joining us?

🤠 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 so you can make a difference from wherever you are. 🎉 Stay tuned for more event details to come!

12/31/2025

The countdown is on! ⏰ With just hours left before 2026, we’re so close to finishing the year strong—and we need your help to get there!!

Thanks to your incredible support, we’ve already reached $50,000 in our Fund Drive. Help us keep the momentum going and push toward $70,000 before the New Year!

Every gift, no matter the size, helps fuel research, support families, and move us forward with hope. 💙

Click the link in our bio and make your year-end gift NOW to help us start 2026 strong. 💪✨ Every gift, no matter the size, helps fuel research, support families, and move us forward with hope. 💙

12/25/2025

Merry Christmas from all of us at ASI! 🎄

Wishing our Alström families, friends, and supporters a season filled with love, warmth, and moments that matter most. Thank you for being part of our community—today and always. ❤️✨

12/23/2025

Thanks to our incredible community, we officially hit our $50,000 December Goal!!! 🎉 👏 WOW!!!

We’re not stopping there! With a little time left in the year, we’re setting our sights on an even bigger milestone $70,000 by the New Year! Every additional gift helps us strengthen family support, advance research and carry this momentum into the year ahead!

There’s still time to be part of the momentum! 💪
If you’re able, we invite you to help us finish strong!

💙 Give now
💙 Share with a friend
💙 Check for Employer Matching

Every donation, big or small, truly makes a difference. You helped us hit our goal of $50,000 by the end of December! Help us finish 2025 strong by hitting $70,000!

Address

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

Website

https://www.alstrom.org/

Alerts

Be the first to know and let us send you an email when Alstrom Syndrome International posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Featured

Psych Dimensions

Want your practice to be the top-listed Clinic in Burleson?