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 physic

ians 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/

06/16/2026

We loved spending time with our ASI family during the ASI Conference & Scientific Symposium and are already looking forward to the next time we're together. ✨

As we begin planning for the future, we'd love your feedback! Please take a few minutes to complete the Conference Survey and share your thoughts with us at the link below:

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

Here, you can also upload your favorite conference photos! 📸 We'd love to see the week through your eyes.

Also, professional photos from Chelsea Ann Photography can also be found at the page above. Feel free to browse and save your favorites!

05/27/2026

What an incredible week together. 💙

Our hearts are so full after this year’s ASI Family Conference & Scientific Symposium. With 188 attendees representing 12 countries, 37 families, and 35 individuals affected by Alström Syndrome gathered together, last week was a powerful reminder of the strength, hope, and connection within our community. 💪 🧬

From learning and laughter to meaningful conversations and unforgettable memories, we are so grateful to everyone who traveled near and far to be part of it all.

Thank you for making this conference so special—there truly is nothing like being together with our ASI family. ✨

05/25/2026

Another incredible day at the ASI Conference! 💙

Learning, laughter, and unforgettable moments together with our ASI family! Our kiddos had more amazing adventures exploring the Fort Worth Zoo and the Fort Worth Museum of Science & History, while families and attendees took part in more meaningful sessions—including “Adulthood in Alström Syndrome” presented by Chelsey Kostick. ✨🧬

Most of all, we’re soaking up the connection, support, and community that make this week so special. There’s nothing quite like being together with our ASI family. 💙

05/22/2026

Our first full day of conference is in full swing! 💙

From meaningful family sessions and fun with the The Creature Teacher, to adventures at Alley Cats Burleson and Main Event, we’re making memories and soaking up every moment together. ✨

Tonight, we’re looking forward to hearing from our keynote speaker, Christy Beam, during dinner, followed by a special connection time and movie night with our ASI families. 🎬🍿

There’s truly nothing like being together. 🥰

05/18/2026

It’s almost time!

The ASI Family Conference officially kicks off this Thursday night, and we can’t wait to welcome everyone for some incredible days full of connection, learning, and community. 💙

Take a look at the agenda and start getting excited—we’ll see you soon in Fort Worth! 🤠✨

05/11/2026

Conference Meal Reminder! 💙🍟

We know kiddos are much happier with familiar “kid food” favorites instead of conference meals—and we want to help make mealtime easy and stress-free for everyone! 😊

If you’re attending conference, please be sure to fill out the form at the following link for any kids meal options so we can plan ahead and take care of our amazing kiddos during conference week.

🍔 https://forms.gle/psxsnfNq3P7oN8e66

More information can also be found in your email! ✨

05/10/2026

Happy Mother’s Day! 💙💐

Today, we celebrate the incredible moms in our ASI community—the caregivers, advocates, comforters, encouragers and strongest supporters.

Your love shows up in countless ways every single day, and the strength and compassion you give your families does not go unnoticed. 💪 We are so grateful for all that you do and the heart you bring to this community.

Wishing all of our mom’s a day filled with love, appreciation, and a few well-deserved moments just for you. 🌷✨

05/07/2026

LAST CALL!! ‼️ TODAY is the day extended deadline to register and book your hotel for the ASI Family Conference & Scientific Symposium in Fort Worth! 🎉🤠🌵

Don’t hesitate any longer—hit those buttons and join us in Fort Worth in just two short weeks!

📅 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.

More details and helpful travel tips can be found over on our website, too!
👉 https://www.alstrom.org/events/conference2026

05/05/2026

The ASI Family Conference & Scientific Symposium will be here in just a few weeks!!

If you’d like to help us make the experience even more welcoming and comfortable for our families, consider an item from our Amazon Wishlist to keep kiddos having fun and safe during the conference.
💙 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

05/03/2026

Today, we honor the strength, resilience, and unity of the global Alström community. 💪

Alström Syndrome was first described in 1959 by Dr. Carl-Henry Alström, helping pave the way for greater understanding, diagnosis, and research.

Today, it’s the individuals and families in this community who continue to inspire hope and progress every single day.

✨ We’d love to see your Alström warriors!

Share a photo in the comments below 👇 and help us celebrate the incredible faces of our ASI community. 💙 ✨ Together, we raise awareness, celebrate one another, and keep moving forward.

Address

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

Website

https://www.alstrom.org/

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