Sotos Syndrome Support Association

Sotos Syndrome Support Association Organized in 1991, the Sotos Syndrome Support Association (SSSA) is made up of families and health care professional throughout the U.S. and the world.

Sotos Syndrome Support Association,
The SSSA is a non-profit organization. The purpose of the SSSA is to provide: A social support environment for professionals and families of individuals with a diagnosis of Sotos and similar syndromes; an understanding of the condition through education; a newsletter for members to network ideas, articles and inspirations; an annual conference for professionals and families to hear experts on such topics as genetics, neurology, psychology and education; an opportunity for professionals involved with Sotos syndrome to meet colleagues and collect data for research.

We are happy and proud to invite you to the first international webinar organized by Assi Gulliver, dedicated to the pre...
01/24/2026

We are happy and proud to invite you to the first international webinar organized by Assi Gulliver, dedicated to the present and future of Sotos syndrome, with a special focus on early and prenatal diagnosis.

🧠 Title
Present and future of Sotos Syndrome: Early Biomarkers in fetal MRI

🎤 Speakers
Dr. Mercedes Serrano, Pediatric Neurologist – Hospital Sant Joan de Déu

Dr. Marta Gómez-Chiari, Pediatric Neuroradiologist and Fetal Imaging Specialist

📅 Date: January 30th, 2026
🕔 Time: 5:00 PM (Rome time)
💻 Platform: online webinar via Zoom, with the option to enable subtitles for simultaneous translation

❔Why this webinar is so important?
Recent studies have shown that it is possible to identify common imaging patterns already during the fetal period, opening a concrete path toward a prenatal diagnosis of Sotos syndrome.

👉 Webinar registration link:
https://us06web.zoom.us/webinar/register/WN_32gCggqkTiuS4jO7VCQgFA

Your participation can truly make a difference.

Welcome! You are invited to join a webinar: Presente e futuro della sindrome di Sotos: biomarcatori precoci nella risonanza magnetica fetale. After registering, you will receive a confirmation email about joining the webinar.

📣 Conference Registration Update! 📣We’re excited to share that conference registration will open on March 1, including e...
01/04/2026

📣 Conference Registration Update! 📣

We’re excited to share that conference registration will open on March 1, including early bird pricing 🎉

Last year, registration opened earlier than usual due to conference expenses, but this year we’re happy to be back to our regular registration schedule.

As you start preparing for conference travel, now is a great time to:
✈️ Book flights
🏨 Reserve your hotel
🎢 Plan some fun along the way

We can’t wait to come together again and share another incredible conference experience with our Sotos families. Stay tuned for more details coming soon! 💜

🌴✨ Sotos families — now’s the time to start planning your Orlando adventure! The magic, memories, and sunshine await. He...
01/02/2026

🌴✨ Sotos families — now’s the time to start planning your Orlando adventure! The magic, memories, and sunshine await. Here is your hotel info 🏨👇

https://www.sotossyndrome.org/conference/hotel-travel/

Drop a 🏰 or 🎢 in the comments if Orlando is on your travel list!

You must be a member to register for the conference. Make sure to join before registering if you have not already done so.

🪩 Happy New Year, Sotos Families! 🪩Wishing our Sotos families a year filled with health, happiness, growth, and many joy...
01/01/2026

🪩 Happy New Year, Sotos Families! 🪩

Wishing our Sotos families a year filled with health, happiness, growth, and many joyful moments. Thank you for being such a supportive and caring community—we can’t wait to see what 2️⃣0️⃣2️⃣6️⃣ brings as we continue learning and growing together! 💜✨

12/31/2025

✨ New Year’s Eve is here! ✨

As you celebrate, please remember to stay safe and take care of one another. We’d love to hear how your family is ringing in the New Year—drop your plans below! 🎉🎆

⬇️🪩⬇️🎉⬇️🥳

12/26/2025

❄️ Winter Newsletter Photos Wanted! 📸

Sotos families—we’d love your help! Please share any fun winter photos of your child or family (snow days, cozy moments, holiday fun, or everyday smiles) to be featured in our upcoming winter newsletter.

You can comment below or message us with your photos. Thank you for helping us celebrate our amazing Sotos community! 💜 ⛄️ 💜

Wishing our amazing Sotos Syndrome families a very Merry Christmas and Happy Holidays 🎄✨Sending warm wishes to every fam...
12/25/2025

Wishing our amazing Sotos Syndrome families a very Merry Christmas and Happy Holidays 🎄✨

Sending warm wishes to every family, caregiver, and individual—may the new year bring hope, health, and many small wins worth celebrating. ❤️❄️

12/06/2025

❤️Sotos Syndrome Family!💚

We’re putting together our Winter Newsletter and would LOVE to feature YOUR holiday cheer! 🎄❄️

Share your favorite festive photo in the comments to help spread some joy this season. ❤️

Send a message to learn more

🧡 Happy Thanksgiving to Our Sotos Community 🧡Today we’re feeling extra grateful for this beautiful community — for your ...
11/27/2025

🧡 Happy Thanksgiving to Our Sotos Community 🧡

Today we’re feeling extra grateful for this beautiful community — for your gratitude, your kindness, and the love you share so generously. Thank you for lifting each other up, celebrating the little victories, and reminding us all that we’re never alone on this journey.

Wishing every family and every individual a day filled with warmth, peace, and joy.

We are so thankful for you. 🦃💛

11/16/2025

🍁 The Fall Sotos Syndrome Newsletter just hit your inbox! 🍁

Be sure to check it out — it’s packed with updates, community photos, and hotel information for the 2026 Sotos Syndrome Conference.

** Check spam/junk box or that your membership is active, if not receiving emails. Newsletters are sent to active members with the email you used to sign-up with! **

Send a message to learn more

📅 Mark Your Calendars! 🌴We’re thrilled to announce that our next Sotos Syndrome Conference will be held July 10th–12th, ...
11/02/2025

📅 Mark Your Calendars! 🌴

We’re thrilled to announce that our next Sotos Syndrome Conference will be held July 10th–12th, 2026 in beautiful Orlando, Florida! ☀️🎉

It’s going to be an incredible few days of connection, learning, and support with friends and families. 💜

📝 Stay tuned! Conference registration details and hotel discount information will be shared soon.

Let’s make this year’s gathering our best yet — can’t wait to see everyone in Orlando! 💫

🎃👻 We hope everyone had a fun, happy, and safe Halloween — full of smiles, laughter, and maybe a few too many treats! 🍬✨...
11/01/2025

🎃👻 We hope everyone had a fun, happy, and safe Halloween — full of smiles, laughter, and maybe a few too many treats! 🍬✨

Now as we say goodbye to October and hello to November, we’re sending love to all our amazing Sotos families. 💛💜

Address

P. O. Box 4626
Wheaton, IL
60189

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