Slc6a1 Connect

09/15/2026

Bracelets, bag charms, pins, and tech tattoos are still available — but this is the final push before we close requests for the year.

Link in bio.

Wear it. Share it. Tag us. Start conversations.

https://donate.slc6a1connect.org/event/rare-swag/e704520

09/13/2026

This stuff gets worn hard — pools, playgrounds, school days — and it holds up.

Beaded, hand-strung, and built for kids who don't take anything off.

Request yours — link in bio.

Wear it. Share it. Tag us. Start conversations.

https://donate.slc6a1connect.org/event/rare-swag/e704520

09/11/2026

Small, sharp, and impossible not to ask about.

The SLC6A1 brain pin is navy hard enamel with a gold outline — it sits well on a lapel, a lanyard, a denim jacket, or a bag strap.

Wear it. Share it. Tag us. Start conversations.

https://donate.slc6a1connect.org/event/rare-swag/e704520

09/08/2026

FIRST MAP OF AUTISM IN THE BRAIN HAS BEEN PUBLISHED

“For families of people with profound autism like mine, this is the kind of scientific advance we have been waiting for and praying for. Many people with profound autism have rare genetic variants and the promise of precision medicine has always been that understanding those variants would eventually allow us to move beyond treating symptoms and toward treating the underlying biology.”

THIS. 🧬

A major new study in Science has created the most systematic protein level map of autism risk to date, showing how genetic mutations associated with autism may change the way the brain develops.

For decades, autism treatment has been an enormous scientific puzzle. With more than 250 genes associated with autism, researchers have been trying to understand how these different genetic changes connect.

This new map brings us a step closer.

For the SLC6A1 community, our mission is clear: keep pushing to understand our gene and develop treatments for our patients.

But what we learn from SLC6A1 may reach far beyond our rare disease.

We are a rare disease community with an opportunity to make a very
https://www.science.org/doi/10.1126/science.ady4523

Keep registering. Keep participating. Keep funding the science. Keep pushing for treatments.

We know what is wrong. Now we have to fix it.

09/06/2026

What a weekend! Our lemonade stand in South Hamilton, Massachusetts raised over $100 for SLC6A1 Connect — every cup of lemonade and every lemon cookie sold in the name of rare disease research.

A huge thank-you to our star salesman, Tucker, who rocked the sales and brought all the energy. Moments like these — neighbors showing up, kids leading the way — are exactly what move us closer to treatments for SLC6A1.

Too Rare to Ignore. Too Important to Abandon.

09/05/2026

🦓 Why is the zebra the symbol for rare disease? 💜

In medicine, there’s a saying: “When you hear hoofbeats, think horses, not zebras.” 🐴

It means doctors are taught to look for the most common explanation first.

But sometimes… the hoofbeats belong to a zebra. 🦓💜

A rare disease is the unexpected diagnosis. The one that may take years to find. The one that can be misunderstood because it’s so uncommon.

And that’s why we wear our stripes. 🦓

SLC6A1-related disorder is rare, but our children deserve to be seen, understood, and given every opportunity to thrive.

We may be zebras, but we are not alone. 💜

09/04/2026

🌎 SLC6A1 families around the world: your data matters.

We are asking EVERY family affected by SLC6A1 to register with Matrix and contribute their medical records and health information to research.

Why is this so important?

Matrix has just joined a major ARPA-H initiative led by UNC and Emory that aims to build the world’s largest rare disease data resource — spanning approximately 2,700 rare diseases.

This is exactly why we have worked so hard to build the SLC6A1 community’s data infrastructure.

The more SLC6A1 patients we have registered — across countries, ages, variants and stages of disease — the more accurately researchers can understand SLC6A1, identify patients for research and clinical trials, study outcomes, and accelerate the development of treatments.

It does not matter where in the world you live. We need your data.

Every patient makes our dataset stronger. Every medical record helps tell the story of SLC6A1. And every family who participates helps move research forward for the entire community.

🌎 One global community. One shared dataset. One goal: better treatments for SLC6A1.

Please register with Matrix and upload your medical records.

https://www.einpresswire.com/article/938570500/across-healthcare-s-matrix-joins-unc-and-emory-led-arpa-h-rapid-initiative-to-advance-rare-disease-diagnosis-and-care

09/02/2026

Merch Drop 2026 is here — and it's free.

Demand ran high in 2025, so this year we went bigger: new designs, friendship bracelets, beaded bag charms with a gold clasp, enamel brain pins, and tech tattoos.

Request yours — link in bio.

https://donate.slc6a1connect.org/event/rare-swag/e704520

09/02/2026

Something's dropping.

New designs, friendship bracelets, bag charms, pins, and tech tattoos — the 2026 SLC6A1 merch drop lands next week.

And it's free.

Turn on post notifications so y

09/01/2026

This hits home.

Different gene. Same reality.

Families raising children with rare neurodevelopmental disorders are being asked to navigate profound medical, behavioral and educational needs inside systems that were never designed for this level of complexity.

We absolutely need better schools, better trained providers and better support for families.

But we also need to keep pushing toward the thing that can fundamentally change this equation: treatments that address the underlying biology.

Deep respect to the families who shared their lives so openly. These stories matter.

Christina Hartman and Matthew Lange-Geise are looking for a special education school for their 10-year-old daughter. It could take years, experts say.