Slc6a1 Connect

What do you do when one of the strongest voices in rare disease advocacy moves to your hometown? 🤠

You celebrate him like crazy.

Welcome to DFW, Dennis Lal! Yee haw! We are beyond excited to have you here and incredibly grateful for your partnership, leadership, and commitment to the rare disease community.

Texas rare disease momentum is building. 🚀

💙 Happy Father’s Day to all of the incredible dads in our SLC6A1 community! 💙

Today, we want to recognize one of our unsung heroes Kevin McEntee 👏

Kevin is a devoted husband and father of three, including a daughter with . While many know him as an amazing dad, our community knows him as so much more. From leading technical projects behind the scenes to helping solve seemingly impossible challenges, there is very little Kevin can't do. 💻⚙️🚀

But what makes Kevin truly special is his steady presence. He is the calm voice in the storm, the person who shows up when families need support, and a trusted friend who is regularly helping parents navigate the ups and downs of this journey. ❤️

Kevin embodies what it means to be a great father—not only to his own children, but to an entire community of families who are stronger because of him.

Today, we celebrate you, Kevin. Thank you for your leadership, kindness, generosity, and unwavering commitment to our children. 💛

is looking forward to attending the Biotechnology Innovation Organization (BIO) conference and participating in a storytelling session on Tuesday.

Why is BIO important? The Biotechnology Innovation Organization is the world’s largest trade association representing the biotechnology industry. It brings together scientists, companies, advocates, investors, and policymakers working to transform medicine and accelerate innovation.

Why does this matter? Because for rare disease families, this is not theoretical. We are in a fight for our lives.

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SLC6A1 Connect

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💙🌎👟 The world is walking for Will.

On June 24, employees will support their colleague -Stuart Place- across the globe at Orbis Investments will take part in the Walk for Will: 24 Hour Challenge, walking as many kilometers as possible in 24 hours to raise awareness and funding for SLC6A1, a rare and devastating neurodevelopmental disorder.

Every day, Will faces challenges that most people never see—epilepsy, developmental delays, autism, movement difficulties, and behaviors that impact every aspect of daily life. Families like ours fight battles that are exhausting, heartbreaking, and often invisible.

That is why this means so much.

A company halfway around the world decided that our children are worth walking for. Hundreds of people will lace up their shoes, track their miles, and help move research forward. Every step is a reminder that our families are not alone.

To everyone at Orbis: thank you for choosing to walk for Will, and for every child and family living with SLC6A1. You are helping turn hope into action.

💙 Every step drives awareness.
💙 Every kilometer funds progress.
💙 Every participant makes a difference.

Rare disease mothers share an unmistakable bond. 💜

Nothing needs to be said. We instinctively understand the fear, the exhaustion, the advocacy, and the unconditional love that drives every decision. We know when to step in, how to help, and how to carry one another through the impossible moments.

This is what community looks like. This is what SLC6A1 Connect prides itself on building.

A place where no family walks alone.

Big news for the community! 🎉

We are incredibly proud to share that SLC6A1 has been selected to participate in the Aligning Research to Impact Autism | ARIA, an international effort designed to accelerate clinical trial readiness and therapeutic development for severe autisms! The ARIA Innovative Medicine and Precision Approaches to Clinical Trials (IMPACT) Network is creating a coordinated global infrastructure that works together to accelerate clinical trial readiness and therapeutic development for autism and related neurodevelopmental conditions.

For our families, this is profound. It means SLC6A1 is no longer waiting on the sidelines. It is part of a national mission with the resources and urgency to match our own.

This is what years of relentless advocacy looks like. Thank you to every family who shared your story and refused to let SLC6A1 be ignored.

Advancing Research. Supporting Families. Driving Hope.

Too Rare to Ignore. Too Important to Abandon.

Learn more at www.slc6a1connect.org

This will be someday. So proud of Mahzi Therapeutics for advancing this technology.

The infant was one of the first in the world to be treated.

So proud of these strong mamas!!!

🧬 New SLC6A1 Research Published!

A new publication highlights the broad clinical spectrum of SLC6A1-related neurodevelopmental disorder and reinforces what families have known for years: SLC6A1 affects far more than seizures. The disorder impacts development, communication, behavior, movement, sleep, and quality of life for both patients and caregivers.

Studies like this are important because they help researchers, clinicians, regulators, and industry better understand the full burden of disease and the outcomes that matter most to families. As therapies advance into clinical development, having a comprehensive understanding of the patient experience becomes increasingly critical.

Every publication adds another piece to the puzzle and brings us one step closer to better treatments for individuals living with SLC6A1.

Thank you to the researchers, clinicians, patients, and families whose participation makes this work possible.

📖 Read the publication here:
https://pubmed.ncbi.nlm.nih.gov/42173049/