Sotos Syndrome Support Association

09/02/2025

🎉🏖️ BIG ANNOUNCEMENT TIME! 🏖️🎉

The wait is finally over…we have news for YOU!!!!

📣 The 2026 SSSA Conference will be held in Orlando, Florida this July! 🎆☀️✨

We're beyond thrilled to bring our amazing Sotos Syndrome community together again — and what better place than sunny Orlando? 🏰🌴💙

Thanks to your support, we ended our last event with a profit (yes, we did it!) — but we STILL NEED your help to keep the momentum going and ensure we can make 2026 the most magical and impactful conference yet.

💪👟 That’s why we’re kicking off our Run-Walk-Roll-athon starting this weekend through October 6th! Whether you walk, run, roll, or cheer from the sidelines — every step helps raise critical funds for the Sotos Syndrome Support Association (SSSA).

📅 Mark your calendars
📍 Start your fundraising pages by registering here: https://go.dojiggy.io/fa7e8a
🎯 Set your goals
📸 And don’t forget to share your journey with us!
Let’s keep making a difference — together.

08/31/2025

💜✨ Calling ALL Sotos Families & Friends! ✨💜

Our Annual Run-Walk-Roll-a-Thon is HERE this week — and we need YOU!

Right now, we have 5 amazing participants signed up… but with over 200 members in our group, imagine the awareness and impact we could make if MORE of us joined in!

This event isn’t just about raising funds (though every dollar helps support our mission 💪). It’s about sharing our Sotos stories, raising awareness, and showing the world the strength of our community. 🌎💜

✅ Sign up today
✅ Raise funds starting September 6�✅ Share your page with family & friends�✅ Run, walk, roll — YOUR way, at YOUR pace
Together, we can make this year’s event our biggest and most inspiring yet! 💜👟💜

👉 http://url3026.dojiggy.io/ls/click?upn=u001.ZHWtuHfLQjIjEcJI5zYhQoj9ZosY5-2FnIpZBJ00kN44mbykfluQi-2BQb3yDQxaUONznDx7_nU7XLhcl0wo4D9wE52fTxQN6x8JzWxzNmyqQP4JtQz1sQOYROisPyg0gPZY4vqZ6ue5gI9qCxUqxJ-2FupNQl7mqz6k04h4nPNn5uCOd5EvpaH-2FR1y0zue6-2FbvIBEI7oO4S2QzOiLQ-2FyKHTWfMyrJH3r9VBw-2BoS7jvCCJKcy6nMaRtD1oJ3YrUUFFu1ImESuo2ZQJT3aeuv3-2FyS-2BbkHe-2FRzQ-3D-3D

08/30/2025

🚨 ONE WEEK AWAY! 🚨

We’re just 7 days from our annual Run-Walk-Roll-a-Thon! 🏃‍♀️🚶‍♂️🧑‍🦽

Whether you're running, walking, rolling, or cheering from the sidelines, it’s going to be an incredible month of community support, raising awareness, and supporting the SSSA! 💜💛

📅 Mark your calendar: September 6-October 6, 2025
✅ Have YOU registered yet????
👉

08/25/2025

Hello! 👋🏼

It’s been two years since we first launched the Overgrowth Syndromes Alliance (OSA) - Patient Priority Survey (PPS) and your voice is more important than ever!

We're inviting caregivers and individuals impacted by overgrowth syndromes to complete the survey again to ensure that patient and family priorities continue to guide our efforts at every stage. The data collected will be shared back with each participating organization to support your community’s ongoing work.

The OSA Patient Priority Survey was designed to identify both shared themes across the overgrowth community and disorder-specific needs. With over 445 participants so far, this data has already helped inform and direct research priorities and we’re excited to build on that foundation!

Survey Link: https://form.jotform.com/231714617886061
(The PPS is translated into Spanish, Japanese, Turkish and Dutch)

Deadline to participate: August 30, 2025

08/24/2025

📣 Meet board member, Diana Martínez from Camarillo, CA. 📣

She has been a member of the Sotos Syndrome Support Association for approximately three years and joined the board at the 2024 conference in Denver. Her daughter, Celeste, is eleven years old and was diagnosed with Sotos when she was 5. Diana, Celeste, and the entire family attended their first conference in 2023 in Redondo Beach, California, where they received so much support - finding other parents, meeting with doctors, learning from the presenters, having Celeste connect with other Sotos kids, and her sons find “conference buddies” (e.g., friends) for life. She is so proud of Celeste, who loves art, music, soccer, swimming, and travel--especially when she gets to stay at hotels!

Diana is an Associate Professor of Communication and Associate Director of the Center for Teaching Excellence at Pepperdine University’s undergraduate college in Malibu, California. She regularly conducts rhetorical research, teaches a variety of communication courses, and attends conferences in her field. In her free time, she enjoys reading, traveling, and getting back into running.

We are so happy to have Diana on the SSSA Board. 💜💛

08/23/2025

🎉 Get Ready for the Annual Run-Walk-Roll-a-Thon! 🏃‍♀️🧑‍🦽🚶

Mark your calendars—our Run-Walk-Roll-a-Thon begins on September 6!

✅ Create your team starting TODAY using this link: https://go.dojiggy.io/fa7e8a

💰 Fundraising officially kicks off on September 6!

Whether you're running, walking, rolling, or cheering from the sidelines, this is your chance to make a difference—and maybe even become our Top Team of 2025! 🏆

Who's ready to lead the way? 💜

08/21/2025

📬 The Latest SSSA Newsletter is HERE!

Check your inbox — our newest edition just dropped today! 🎉

Inside you’ll find:
✅ A link to our 2025 Conference Survey – we want your input!
✅ Info on how to sign up for our Annual Fundraiser – let’s make it our biggest year yet!
✅ Plus, updates, photos, and more from our incredible community.

📩 Didn’t get the email? Check your spam/junk box or check your membership status.

💛 As always, thank you for being a part of our Sotos family. We couldn't do this without you! 💜

08/14/2025

📣 Get Ready for Our Annual Run-Walk-Roll-a-Thon! 🏃‍♀️🦽🚶‍♂️

We're just THREE weeks away from one of our favorite events of the year — the Sotos Syndrome Support Association Walk-Run-Roll-a-Thon! 💜

🗓 Registration: https://go.dojiggy.io/fa7e8a/Campaign/Details
💲Fundraising: Sept. 6 – Oct. 6

This is your chance to get moving, raise awareness, and support our amazing community. Every step, roll, and stride helps keep our SSSA conferences going strong, giving families the connection, education, and support they need.

📣 Start rallying your friends and family to sponsor you or join in! Let’s make this the most impactful year yet!

Use the link above ⬆ to get registered and starting raising funds beginning September 6. 💛

08/04/2025

🎉 Mark Your Calendars: Our 2nd Annual Run-Walk-Roll-a-Thon is COMING! 🏃‍♀️🦽🚶‍♂️

Get ready to lace up, roll out, and rally your community — the Run-Walk-Roll-a-Thon is back! 💛

📅 When: September 6 – October 6, 2025
📍 Where: Anywhere! Your neighborhood, your driveway, your local park — wherever you are!

How It Works:
✅ Create a team (or go solo!) LINK COMING SOON!
✅ Walk, roll, or run around your block, park, or driveway daily
✅ Post your photos and tag us! 📸
✅ Share your personal donation link to raise funds for future SSSA conferences

This is a fun, inclusive way to stay active, raise awareness, and support our amazing Sotos Syndrome community. Every step counts — and every dollar helps us connect more families through future gatherings.

Start getting your teams ready, and let’s make this year even more impactful! 💜💛

08/01/2025

💜🌻 Happy August, SSSA Family! 🌻💛

As we step into a brand new month, we want to send love, strength, and sunshine to each and every one of you. Whether you’re soaking up the last days of summer, preparing for a new school year, or just enjoying a slower pace — August is a time for fresh beginnings and hopeful moments.

Wishing you all a joyful, peaceful, and healthy August! Feel free to share what you're looking forward to this month in the comments! 👇

07/30/2025

📣 We Need Your Feedback! 📝

To everyone who joined us at the 2025 Sotos Syndrome Conference in Philadelphia—thank you for making it such a meaningful and memorable event!

We're now sending out a quick survey to hear about your experience. Your feedback is incredibly important and will help us improve future conferences and events. 💬✨

✅ What worked well?
✅ What could be better?
✅ What would you love to see in the future?

💡 Your voice helps shape what comes next for our community!

👉 Check your email for the survey link, and please take a few minutes to share your thoughts. We truly appreciate it!

Send a message to learn more