Sotos Syndrome Support Association

03/08/2026

🌴🎢 Will we see YOU in Florida? ☀🏖

Register TODAY ➡ https://www.sotossyndrome.org/conference/overview/

03/05/2026

📣 Important Links 📣

Hotel information ➡ https://www.sotossyndrome.org/conference/hotel-travel/

Conference Registration ➡ https://www.sotossyndrome.org/conference/rates/

2026 Agenda ➡ https://www.sotossyndrome.org/conference/agenda/

Silent Auction Information ➡ https://www.sotossyndrome.org/conference/silent-auction/

Financial Assistance ➡ https://www.sotossyndrome.org/conference/financial-assistance/

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

03/01/2026

Early Bird Registration is OPEN now.
Prices will increase April 1, 2026.

https://www.sotossyndrome.org/conference/rates/

03/01/2026

02/28/2026

Sotos is rare and affects 1:14,000 people!

Care 4️⃣ Rare 💜💛

02/28/2026

Early Bird Registration opens TOMORROW!

Set your alarms and get the DEAL before April 1!

02/26/2026

✌ Questions:

1. Do beans belong in chili?
2. Cinnamon rolls or cornbread?

Happy National Chili Day!

02/22/2026

The Winter 2026 newsletter is hitting your email today.

The newsletter is sent to active member accounts and associated with the email you signed up with through the SSSA organization. * Be sure to check spam/junk folders! *

To join - click here:

Stay informed with SSSA Notes: our monthly newsletter packed with stories, tips, and updates on Sotos syndrome.

02/16/2026

📣 FUNDRAISING OPPORTUNITY 📣

RaiseRight supports our organization by donating a % of your purchases through their program.

They offer gift cards and online shopping for the items you already buy every day.

Please consider using RaiseRight to help our organization continue supporting families and individuals affected by Sotos Syndrome.

02/15/2026

Mark your calendars! 💜💛

02/15/2026

💜🤍💛

02/10/2026

📣Attention Parents: We are looking for volunteers to be on our Sotos Parent Panel at the annual SSSA Conference in Orlando. If you are willing to answer questions in front of an audience and provide helpful feedback, please let us know. We would like to have parents from different ages and stages of life.

We will have a pre-set set of questions, and then we will also take open Q/A at the end. To help us develope the prepared questions, please provide your feedback on this Google form. https://forms.gle/Ei1L9zJBHLXqpUSy7

Your assistance is very much appreciated!

What questions would you like to see answered on the parent panel this year at the SSSA conference? Panelists will respond to the same set of common, real-life questions, offering honest perspectives on how they navigated shared challenges at various points in their journey. Topics may include manag...