Sotos Syndrome Support Association

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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.

10/13/2025

🎉 HUGE THANK YOU to Our Amazing SSSA Community! 🎉

We are absolutely thrilled to announce that thanks to your incredible generosity, spirit, and teamwork, we raised an amazing $21,847 during our Second Annual Run-Walk-Roll-Athon! 🏃‍♀️🚶‍♂️🧑‍🦽

Every step you took, every dollar you raised, and every share of support brings us closer together — and helps us make future SSSA conferences even more impactful, accessible, and empowering for our entire community.

Your support means the world to us. From the bottom of our hearts — THANK YOU. 💜

10/07/2025

⏰ FINAL 2 HOURS! ⏰

This is it—the last chance to get a donation in! Every single donation counts right now, no matter the size.

📣 If you've been meaning to give, now is the time.

https://go.dojiggy.io/fa7e8a/Members/Details?fbclid=IwY2xjawNRS_JleHRuA2FlbQIxMABicmlkETFGZ3RGSFpySWFBOVl6dHk2AR4SjeWYQHUfVwWBFH1KmpWt3dMs2mrxvG4IztL5A3GnIcE4W6ZiTLcuKqZGdQ_aem_bSD72tnV6x7YZGoKhJe8tA

10/05/2025

📚🍎 Happy World Teachers' Day! 🍎📚

Today, we celebrate the incredible individuals who dedicate their lives to shaping minds, inspiring dreams, and changing the world—one lesson at a time.

To all the teachers out there:
Thank you for your patience, your passion, and your unwavering belief in the power of education. Your impact reaches far beyond the classroom and stays with us for a lifetime. 💛

Drop a comment below and tag a teacher who made a difference in your life. Let’s show them how much they mean to us! 👩‍🏫👨‍🏫

10/03/2025

🏃‍♀️🚶‍♂️♿ 🚴Last Call, Sotos Families! 🎉

This is the FINAL WEEKEND to raise funds for our Run-Walk-Roll-a-thon 💪✨

Let’s make one last push to support our amazing Sotos community. Every dollar raised goes directly towards our annual conferences that benefit our kids and families. Whether you run, walk, or roll, your support moves us all forward. 💜

✅ Haven’t donated yet? Now’s the time!
✅ Already donated? Share the link with family and friends!

➡ https://go.dojiggy.io/fa7e8a/Members/Details?fbclid=IwY2xjawNGKRFleHRuA2FlbQIxMQABHlEWTKnvlfilPORTS1rpZJhFiyK7nLTV_be-mdeXMot-uCurm_Em-LWv_nWs_aem_K3SkNsdV1kMIyMVS3u95dQ

Together, we can finish strong! 🏁

10/01/2025

🎃 Happy October to our Sotos Families! 🍂

Wishing you a month full of warmth, joy, and a little Halloween magic! 👻🧡

09/28/2025

➡️ Donate here: https://go.dojiggy.io/fa7e8a/Members/Details?fbclid=IwY2xjawNGJ0pleHRuA2FlbQIxMABicmlkETFkWUwzZHF3djE1Z3ZyV0ZoAR60MJhWpAxDXekcpE6nC0xaSnDDspgqt8-yuVhHXhQfPIGmxEQLVZ2DrSDw1w_aem_MGw4K7SMqhHld_2lfdaeXw

09/27/2025

🚶‍♀️🏃‍♂️🚲 We’re down to the FINAL 10 DAYS of our Walk-Run-Roll-a-thon for Sotos Syndrome!

Let’s finish strong together 💪—every step, every share, and every donation helps us raise awareness and support for our amazing Sotos community. 💜

✨ Join us in making these last days count—spread the word, invite your friends, and keep the momentum going!

➡️ Donate here: https://go.dojiggy.io/fa7e8a/Members/Details?fbclid=IwdGRjcANEvSZleHRuA2FlbQIxMQABHlHcSfm7ZNMsBA0QstYTFank01p2jlSzXkHcrPwfXv821ljhCggqBvz4kDCn_aem_JK7mdLZ2d2peqoeV9zWKXg

09/24/2025

📸 Show Us Your Steps for Sotos! 🏃‍♀️🚶‍♂️🦽 🚴

As part of our Run-Walk-Roll-a-thon fundraiser, we’d LOVE to see YOU in action! Whether you're running, walking, or rolling—snap a photo and share it in the comments below to show your support.

👇 Drop your pictures in the comments below and tell us where you're walking from!

09/22/2025

🍂 Hello, Fall! 🍁

Happy First Day of Fall to our amazing Sotos Syndrome community! As the leaves begin to change and the air turns crisp, we’re reminded of the beauty in every season — just like the unique and wonderful individuals that make up this community. 💛

Whether you're jumping into leaf piles, sipping warm drinks, or enjoying quiet cozy moments, we hope this season brings joy, peace, and connection. 💜

09/20/2025

🎉 TWO WEEKS DOWN — OVER $17,000 RAISED! 💛

We're incredibly grateful for the love and support pouring in for our SSSA Run-Walk-Roll-a-thon Fundraiser. Every dollar makes a difference in raising awareness, funding conferences, and supporting our SSSA families.

Let’s keep the momentum going!
👉 Like
👉 Share
👉 Donate if you can

https://go.dojiggy.io/fa7e8a/Members/Details?fbclid=IwY2xjawM628RleHRuA2FlbQIxMABicmlkETFUcXpock5IVEx2SmczVFU4AR5Lkte93mUNFneTD29HWnvUdzXTYCDpY7_oBM3JPbXRWLCvZCi1AJ3BAV9B4w_aem_J2pp_39qZgZXRxX0COUikQ

09/18/2025

🎉 Our Sotos Syndrome Fundraiser is on a Roll! 🏃‍♀️🦽🚶‍♂️

We are LOVING all the energy, whether you're running, walking, or rolling with us — thank you for showing up and making a difference! 💜

With just 1️⃣8️⃣ days left, there's still time to raise even more awareness and funds. Let’s keep the momentum going and finish strong together!

➡ https://go.dojiggy.io/fa7e8a/Members/Details?fbclid=IwY2xjawM4Tv9leHRuA2FlbQIxMABicmlkETFSR1BnQ3VIOWlmZG9ZcDV4AR7Kmn8O8d-5C9RMw40lr5rBdEv7S6a_CMkxwvJGp66brA01vip6d9HCkJP-MQ_aem_nJmEJFId70FZRagZt7m-pQ

🔥 Let’s do this!

09/17/2025

📸 Calling All Families! 🍁🎃

Whitney is putting together our September/October Newsletter and would love to feature YOUR amazing moments! Whether it's back-to-school smiles, cozy fall activities, pumpkin patch adventures, or fall fun!

👉 Please comment below so we can showcase the heart of our community in the upcoming issue.

Thank you for helping us make our newsletter extra special! 💜

Address

P. O. Box 4626
Wheaton, IL
60189

Website

http://www.sotossyndrome.org/

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