Slc6a1 Connect

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.

08/26/2026

As summer comes to an end, I want to recognize someone who became so much more than an intern to our family and our work.

is an exceptionally gifted writer, but what makes her truly special is who she is. She has one of the most beautiful, gentle souls and brings thoughtfulness, kindness, and genuine care to everything she does.

This summer, she became an essential part of helping us build the first Rare Texas Forum, happening later this year. She helped take an idea and turn it into something real, and her fingerprints will be all over what I know will be an incredibly meaningful event for the rare disease community.

And somewhere along the way, she also became part of our family. Maxwell and Riley are completely obsessed with her. Truthfully, so am I.

Lucy, thank you for giving us your summer, your talent, your heart, and so much of yourself. We were incredibly lucky to have you, and I cannot wait to see where your gifts take you next. You will always have a place with us. ❤️

08/25/2026

A one-year-old in Lockport, Illinois has a whole town behind her. 🍋

Lily was diagnosed with SLC6A1 in December, right before her first birthday. Yesterday her mom Maria set up a lemonade stand at Silo Bend Park — and Lockport showed up.

S&T Pizza donated the pizza. Three local Chick-fil-A locations sent about 40 gallons of lemonade. Costco, Public Landing, Taco Patio and Kenwood Liquors added gift cards and matching donations.

100% of the proceeds go to SLC6A1 research.

Since January, Lily's family has raised nearly $130,000. That is what happens when a family is told that funding is the only thing standing between their child and a treatment — and they refuse to accept it.

One day. One community. One cure.

https://patch.com/illinois/homerglen-lockport/fighting-cure-our-babies-lockport-mom-raising-funds-daughters-battle?utm_source=article-mostrecent&utm_medium=rss&utm_term=community+corner&utm_campaign=recirc&utm_content=social

08/21/2026

For years, families affected by SLC6A1 have asked one simple question:

Can we change our child's future?

A newly published study offers encouraging evidence that the answer may be yes.

Researchers found that in SLC6A1 related disorder, approximately 15% of the variability in developmental outcomes was explained by environmental and treatment related factors rather than genetics alone.

That means genetics matter, but they are not the whole story.

Two children with similar SLC6A1 variants may have different developmental trajectories based on factors such as:
• Early seizure control
• Treatment timing
• Medical care
• Access to therapies and developmental support

While this study cannot predict an individual child's outcome, it reinforces something our community has believed from the very beginning:

Treating SLC6A1 early and effectively has the potential to improve development, not just reduce seizures.

This is why SLC6A1 Connect continues to invest in:
🧬 Disease modifying therapies, including gene therapy, ASOs, and novel medicines
🧠 Earlier diagnosis and newborn screening
💙 Better standards of clinical care
🤝 Comprehensive developmental supports for every child

Every scientific discovery moves us closer to a future where a diagnosis of SLC6A1 no longer determines a child's destiny. Together, we are working to give every child the greatest opportunity to reach their

https://pubmed.ncbi.nlm.nih.gov/42470662/

08/17/2026

🎬 The rare disease community is making history, and now the world can watch!

What started as families refusing to accept "there's nothing that can be done" has grown into a global movement. Every parent, patient, sibling, researcher, clinician, and advocate has helped change the future for rare diseases.

We are incredibly proud that **SLC6A1 Connect** is part of that story.

*RARE: A Rare Disease Revolution* features our own **Amber Freed**, sharing the journey of the SLC6A1 community and what is possible when families come together to drive research, inspire scientists, and accelerate treatments.

This isn't just a documentary. It's a celebration of the resilience, determination, and hope that defines the rare disease community.

🎥 You can now stream *RARE* on:

Amazon Prime: https://lnkd.in/gCpCWCCG

Google Play: https://lnkd.in/g7UGPVUf

YouTube: https://lnkd.in/gRynsfAs

Apple/iTunes: https://lnkd.in/geqC-FH7

🌍 Watching from outside the United States? Send us a message, and we'll share a discount code to watch the film on New Day Films for just $5.

We hope you'll watch, share it with your friends and family, and help show the world what the rare disease community can accomplish when we refuse to give up.

Together, we are proving that rare is powerful. 💙

08/14/2026

Twelve days from now, we're asking families across the country to do one small thing on the same afternoon.

Set up a lemonade stand.

That's it. A table, a pitcher, and a reason to talk to your neighbors about SLC6A1. You don't need a permit-level production or a fundraising background. Some of the most powerful stands we've seen were a card table at the end of a driveway with a kid handing out cups.

Here's how it works:

1️⃣ Pick your spot — driveway, park, ball field, after church. Anywhere people already gather.
2️⃣ Pour and share — set out the lemonade and tell your family's story. Every cup starts a conversation.
3️⃣ Send it in — what you raise goes straight to research for treatments and a cure.

One family can't fund a cure. Hundreds of families, all on the same day, absolutely can start.

🍋 SLC6A1 Lemonade Stand Day — Saturday, August 22
Comment "LEMONADE" or click the link and we'll send you the host kit.

One day. One community. One cure.