Giving Back: How Your Purchase Supports the Sotos Syndrome Community
This cause is personal — and every purchase makes a difference.
We're proud to announce that 10% of the proceeds from select products will be donated to the Sotos Syndrome Support Association (SSSA). This isn't just a business decision — it's a deeply personal one. A member of our family lives with Sotos syndrome, and we've seen firsthand the challenges, the triumphs, and the incredible importance of community support for families navigating this rare condition.
We want to use our platform to raise awareness, support the families who need it most, and contribute to an organization that has been a lifeline for thousands since 1988.
What Is Sotos Syndrome?
Sotos syndrome is a rare genetic condition that causes physical overgrowth during the first years of life. Children with Sotos syndrome are often significantly taller, heavier, and have larger heads than their peers, which is why the condition is sometimes referred to as cerebral gigantism.
But the challenges go far beyond physical size. Rapid physical growth is often accompanied by delays in motor, cognitive, and social development. Muscle tone tends to be low, and speech can be significantly impaired — creating a difficult reality for children who may look older than their age but are developmentally behind their peers.
Here's what gives families hope: for many individuals, Sotos syndrome primarily affects the timing of development rather than its ultimate outcome. As children grow into late childhood and beyond, the gap often begins to close. Muscle tone improves, speech develops, and many adults with Sotos syndrome reach normal ranges of height and intellectual ability.
Sotos syndrome is linked to mutations in a gene called NSD1 on chromosome 5, identified by researchers in 2002. Most cases occur spontaneously rather than being inherited, and diagnosis is often made months or even years after birth — a long, uncertain road for families who are searching for answers.
What Does the SSSA Do?
The Sotos Syndrome Support Association is a nonprofit 501(c)(3) organization run entirely by volunteers — most of whom are family members and friends of individuals with Sotos syndrome. They are also a proud member of the National Organization of Rare Disorders (NORD).
Here's how they support the Sotos syndrome community:
Family Connection & Support — The SSSA provides a social support network where families can meet, share experiences, and help one another navigate the challenges of the condition. They even maintain a toll-free phone line (888-246-SSSA) staffed by a parent of an individual with Sotos syndrome, so families never have to feel alone.
Education & Awareness — Through published handbooks, DVDs (available in multiple languages), monthly newsletters, and online resources, the SSSA works to educate families, doctors, therapists, and teachers about what Sotos syndrome looks like and how to best support individuals living with it.
Annual Conference — Each summer, the SSSA brings together over 250 people — roughly 60 to 80 families from around the world — for a weekend of learning, networking, and bonding. The conference features expert speakers in genetics, neurology, psychology, and education, along with childcare and social events for the entire family.
Professional Research — The SSSA creates opportunities for medical professionals and researchers to collaborate, collect data, and advance the understanding of Sotos syndrome.
Where Your Donation Goes
When you purchase one of our designated products, 10% of the proceeds go directly to the SSSA to support:
- Family support programs and resources for newly diagnosed families
- Educational materials for parents, schools, and medical professionals
- The annual conference, including financial assistance for families who otherwise couldn't attend
- Ongoing research into Sotos syndrome and related overgrowth conditions
- Community infrastructure like the member newsletter, online forums, and the family support hotline
Every dollar helps a family feel less alone.
How You Can Help Beyond Your Purchase
If this cause resonates with you, there are additional ways to make an impact:
🔹 Make a direct donation — Visit sotossyndrome.org/donate to give directly to the SSSA.
🔹 Become a member — For just $40/year, you can join the SSSA and gain access to their newsletter, member forums, photo gallery, and advisory board. Learn more at sotossyndrome.org/join.
🔹 Attend or support the annual conference — The SSSA's 2026 Conference is a powerful gathering for families and professionals. You can attend, volunteer, or contribute to the silent auction.
🔹 Share this post — Awareness matters. Many families spend months or years searching for answers before receiving a Sotos syndrome diagnosis. The more people who know about this condition, the sooner families can find the support they need.
🔹 Learn more — Visit the SSSA's website at sotossyndrome.org to read about the condition, explore resources, and connect with the community.
Why This Matters to Us
When someone you love is affected by a rare condition, you quickly learn that awareness and community make all the difference. The Sotos Syndrome Support Association has been that community for families since 1988 — and we're honored to play a small part in supporting their mission.
Thank you for shopping with purpose. Together, we're making a difference — one purchase at a time.
To learn more about Sotos syndrome and the SSSA, visit www.sotossyndrome.org.
If you have questions about Sotos syndrome, the SSSA offers a toll-free hotline at 888-246-SSSA (7772) and can be reached at www.sotossyndrome.org/contact.