This fall, our Executive Director, Angela Weaver, represented the SMS Research Foundation at the National Organization for Rare Disorders (NORD) Summit in Washington, D.C., from October 20-22. With the theme “Equitable Access to Innovation,” the summit gathered advocates, researchers, and leaders to address the pressing need for progress in rare disease treatments. With over 7,000 rare diseases identified and fewer than 5% having an FDA-approved treatment, the discussions and connections fostered here will help drive our ongoing efforts to advance research for Smith-Magenis Syndrome. Angela is pictured here with the International FamilieSCN2A Team, with whom she volunteers in memory of her daughter.

As a valuable takeaway from the summit, we’re excited to share NORD’s free online course, Become a Drug Development Champion. This course empowers our community with essential knowledge to help advance therapies for Smith-Magenis Syndrome.

November is just around the corner, and we’re excited to announce that we’re bringing back our November Match! Thanks to a generous donor, every gift made this month will be matched dollar-for-dollar, up to $5,000. That’s right—your support will go twice as far to fuel the progress we need in Smith-Magenis Syndrome research. Don’t miss this chance to make an even bigger difference for SMS!

Just when we thought the Steps Move Science Walk had wrapped up, your generosity kept going. Thanks to the incredible support from our amazing community, we’ve not only met our $50,000 goal—we’ve surpassed it!

The new total? An outstanding $54,020! We are beyond grateful for a community so dedicated to advancing life-changing SMS research—progress that simply wouldn’t happen without you.

This November, join us in spreading awareness for Smith-Magenis Syndrome! Follow along on our social media accounts and stay up to date on all the sharable facts and stories we’ll be posting to support SMS awareness throughout the month.

Whether it’s “I love someone with SMS” or “I love someone with SMS (it’s me)”, sharing your story can help make a difference in how others understand and connect with SMS.

Help make this month of awareness even more impactful by sharing your experience. Send yours to support@smsresearchfoundation.org!

Support SMS research with gear that makes a difference—all proceeds fund vital research. Order now to spread awareness this November!

Imagine the thrill of a minor league baseball game where the spotlight shines on someone with Smith-Magenis Syndrome as they proudly sing the National Anthem or “Take Me Out to the Ballgame.” Hosting a Singing for SMS event is an exciting and impactful way to raise awareness for SMS while bringing your community together for a fun-filled day at the ballpark.

These events are more than just fundraisers—they’re opportunities to celebrate the resilience, determination, and joy of individuals with SMS. By featuring them on game day, you’ll be making a lasting impact not only for the SMS Research Foundation but for everyone in attendance. And to make it even more special, some ballparks may donate a portion of ticket sales to further support SMS research! Whether it’s the love of baseball or the chance to support life-changing research, hosting a Singing for SMS event brings it all together in a meaningful way.

PLAN AHEAD FOR THE PERFECT DAY AT THE BALLPARK! Summer might seem far off, but a great event takes some advance planning. Let’s get the ball rolling now so you can hit a home run! To learn more about how to host your own Singing for SMS event, contact Board Member Steven Tanenbaum at info@smsresearchfoundation.org.

The Smith-Magenis Syndrome Research Foundation is dedicated to improving the lives of those impacted by Smith-Magenis Syndrome. Since our founding in 2010, we have been singularly focused on advancing scientific research to pave the way for life-changing treatments for SMS.

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