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/

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.

04/30/2026

ASI Friends!! ‼️ The deadline to register and book your hotel for the ASI Family Conference & Scientific Symposium in Fort Worth has been EXTENDED to May 7th! 🎉🤠🌵

Hurry hurry!! 🏃‍♂️ Here’s your chance to join us for an awesome event jam packed full of fun, education and community with our ASI Family!

📅 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

04/29/2026

TODAY, April 29, is the LAST DAY to get registered and book your hotel for the ASI Family Conference & Scientific Symposium in Fort Worth! 🤠🌵

This event is jam packed full of fun, education and promises to be an unforgettable week!

📅 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

04/28/2026

We’re honored to welcome Dr. Alex Levin, Chief of Pediatric Ophthalmology and Ocular Genetics at the Flaum Eye Institute, University of Rochester, to this year’s ASI Conference. 👁️💙

Dr. Levin is leading groundbreaking work in developing low-cost, open-access gene therapies aimed at treating and preventing blindness worldwide—an exciting and impactful area of research for the rare disease community. 💪 👏

Want a preview? Hear more from Dr. Levin in this podcast episode:
🎧 https://open.spotify.com/episode/7p7tnJFUlmwilNNmUpei72

⏰ Conference Registration closes TOMORROW!
Don’t miss your chance to learn from experts, like Dr. Levin, and connect with our incredible community.

💙 Registration: https://tinyurl.com/ASIConference11
🤠 Hotel: https://tinyurl.com/ASIhotel

04/27/2026

It's going to be a wild adventure! 🎉

We’re excited to visit the Fort Worth Zoo! 🌿🐘🦒 🦍 One of the best zoos in the country, and we’re so excited for our kiddos to explore, learn, and enjoy this adventure together! 💙

Registration and Hotel Booking deadline is coming up THIS WEDNESDAY, April 29! Don't miss out on joining us for all this conference fun!!

💙 Registration: https://tinyurl.com/ASIConference11
🤠 Hotel: https://tinyurl.com/ASIhotel

04/24/2026

April is National Volunteer Month! 💙

We’re so grateful for the incredible volunteers who give their time, energy, and heart to support the ASI community—you truly make everything we do possible. 💪

As we prepare for our upcoming ASI Family Conference, we’re looking for volunteers to help make this event unforgettable for our families.

✨ Want to be part of it? Sign up to volunteer by emailing the address below!

Your time makes a difference, and we’d love to have you on the team. 💙

04/20/2026

Last Round of "Where is our ASI Conference Planning Committee?" 🕵️

This one is a little wild…
🐾 Animals from around the world
🌿 Outdoor adventure
📸 Lots of photo-worthy moments

Can you guess where we’re going? 👇👀

Address

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

Website

https://www.alstrom.org/

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