The Heart of Steps Move Science 2026 Our Community. Our Roadmap. Our Moment August 19, 2026

We are living through an extraordinary period in neurodevelopmental research. New genetic technologies are advancing, therapies for other rare neurodevelopmental disorders are moving into clinical trials, and researchers and industry are looking for promising science in which to invest their expertise and resources.

We want SMS to be part of that progress.

For years, families, donors, researchers, and partners have helped build the scientific foundation for Smith-Magenis syndrome research. Today, we have promising approaches focused on RAI1, new research underway, and a 5-Year Research Roadmap with a clear North Star: moving toward a first disease-modifying clinical trial for SMS by 2030.

But a Roadmap only moves us forward if we have the resources to put it into action.

This is where our community plays a critical role. In rare disease, patient communities often help fund the early research that generates evidence, reduces risk, and gives larger funders, researchers, and industry a reason to invest. At the same time, we must build the patient data, partnerships, and clinical trial readiness that will be needed when promising therapies are ready to advance.

We cannot wait for someone else to build the future of SMS. We have to help create the opportunity that brings others to the table.

That’s why Steps Move Science 2026 matters so much.

This Walk is about more than raising money. Every team formed expands awareness of SMS. Every new supporter strengthens our community. And every dollar raised helps demonstrate that we are ready to invest alongside the scientists and partners working toward better treatments.

And very soon, we’re going to announce something that could make what you raise through this year’s Walk even more powerful.

Now is the time to get involved:

• Start a team.
• Make a donation.
• Share your SMS story.
• Bring new people into our mission.
• Help us turn the Roadmap into progress.

The science is moving. The opportunity is here. Let’s make sure SMS is ready for it.

The Roadmap has been launched. Now let’s walk it—together.

For more information, please email info@smsresearchfoundation.org or go to our website – www.smsresearchfoundation.org