| RESEARCH IS AT THE HEART OF OUR MISSION |
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Research Gives Hope to our Community |
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| The SMS Research Foundation is excited to share with you Dr. Wei-Hsiang Huang’s latest publication on rAAV-CRISPRa therapy in Smith-Magenis Syndrome mice. Read the full article SMSRF RESEARCH PUBLICATIONS |
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In March, Dr. Wei-Hsiang Huang gave inspiring research presentations to the SMS Research Foundation Board of Directors and Scientific Advisory Panel. Did you know that Dr. Wei-Hsiang Huang’s lab at McGill University is one of the few laboratories in the world that is primarily focused on studying Smith-Magenis Syndrome? SMSRF Research Grant funds in 2022 helped the Huang lab generate an advanced animal model for SMS, which has tremendous potential for studying the developmental trajectories in brain function. This project has a high translational impact and provides a unique path towards the future development of therapeutic approaches to normalize RAI1 levels and improve quality of life for individuals with SMS. To learn more about Dr. Wei-Hsiang Huang’s research visit our website. |
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Share My Strength Spotlight |
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"September 30th, 2015 is a day that will always be etched in our minds. That is the day that we found out how much our world would change. Smith Magenis Syndrome. Three words that we had to add to our vocabulary. A diagnosis that took our journey in a direction we did not expect. As we processed that information, we couldn’t help but look at our son Gavin. Even though we felt like our new lens of information changed everything, somehow in those first few moments, nothing changed. Gavin was and is, still Gavin. That beautiful grin, that contagious laugh, his love for hugs, his bond with his little brother Graham, and empathy for others. It was still there- despite of the challenges he has and will face.
Months passed by and a desire to learn more about SMS continued to rise. We eventually found the Smith Magenis Syndrome Research Foundation, and this was exactly what we needed to see. Parents of individuals with SMS not only raising awareness but also raising monies for research to make the quality of life better. This was our springboard for Grinning with Gavin. Instead of being swallowed by sadness, we chose to join the efforts of SMSRF and turn our pain into purpose. We knew in our little village of the world; it was a mighty one. Even before his diagnosis Gavin had a way to make a lasting impression on others. It all starts with that grin. Hence, Grinning with Gavin was born and continues to grow as a nonprofit. Our hope is to help aide in the awareness and donate funds for the continued works of the Smith Magenis Syndrome Research Foundation." -Bethany Bonetti Thank you for sharing your story Bethany! Would you like to share your story? Please send your questions and stories to jsauer@smsresearchfoundation.org. Be sure to follow us on Facebook and Instagram for more stories of strength from our community.
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Help Us Spread Awareness! |
Why not gear up early for the Steps Move Science Walk and start spreading SMS Awareness NOW? Check out our SMSRF Store for new designs as well as classic apparel. Thank you for supporting the SMS Research Foundation! All proceeds from sales go to supporting the SMS Research Foundation’s mission to advance scientific research leading to innovative treatment options for people living with Smith-Magenis Syndrome (SMS). You can now order from our shop year-round, so be sure to check back often for new designs, and all your SMS Awareness Gear. Click link to visit the shop. SMSRF OFFICIAL MERCHANDISE STORE ›› |
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Without Funding Research Cannot Happen |
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Thank you for making Laugh it Up Lauderdale a success! We truly appreciate everyone who planned, sponsored, donated, or came out and supported this event to benefit the SMSRF and David Posnack JCC. A HUGE thank you to SMSRF co-founders Dan and Missy Longman for hosting this fun filled night to support the SMS Research Foundation. We are grateful for all that you do for the SMS Community! Without funding research cannot happen. We ask for your help as families, caregivers, and friends of those affected by SMS to help the cause of finding effective treatments. Many people are happy to give: help provide them with the opportunity to do so by starting your own fundraising event. Get started today! Email us at: info@smsresearchfoundation.org |
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We are excited to announce that Steven Tanenbaum has joined our board of directors. Steven is the Global CFO of OpenX, a business unit of WPP – the British multinational communications, advertising, public relations, technology and commerce holding company. Steven is responsible for the global financial, commercial, and contractual relationship between WPP and the Coca-Cola Company. Steven previously held a similar position at WPP, for all Colgate-Palmolive brands globally. Steven is a Certified Public Accountant, with extensive experience in both external and internal audit. Steven lives in New Jersey with his two children, Logan and Marni. Marni was diagnosed with SMS in 2021 at the age of 4. While receiving the SMS diagnosis was difficult, Steven prefers to take action to help Marni and all individuals with SMS. Steven is extremely excited about joining the SMSRF Board and looking forward to all of the advancements the SMSRF will make for the SMS community. Meet Our SMSRF Team |
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Improving Lives Through Research
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The SMS Research Foundation is dedicated to improving the lives of people with SMS. Since our founding in 2010, we have been singularly focused on investing in scientific research that will lead to life-changing therapeutics for this rare and complex genetic syndrome. |
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