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SMS Awareness Shared Around the Globe

By Michelle Larscheid, Progam Coordinator

This year, we pulled out all the stops to raise awareness for Smith-Magenis Syndrome for SMS Awareness Day. Here’s a glimpse at all the ways our community banded together to spread SMS awareness this November!

We kicked off the month by unveiling this year’s SMS Awareness Day t-shirts.  The “Get Ready to Be Hugged” themed shirts were very popular and were available in both white and blue. It was great to see so many smiling faces with their new shirts on our social media channels as November 17th approached.

An Awareness Calendar was posted on the PRISMS website with action steps and prompts for our community members to get involved and spread awareness.  The calendar included a PRISMS Facebook frame, a sibling story, a coloring page activity, a creative fundraising blog post, and many ideas for our community to spread awareness with their family and friends. We also posted Ann Smith’s Keynote Address from the Virtual Summit ”Smith-Magenis Syndrome – Decades of Discovery.“

PRISMS was on the news!  PRISMS Regional Representative Callihan Marshall is a local news anchor at WSYR-TV in New York. Her 31-year-old sister Briahna Marshall has SMS. Callihan produced a feature story on Smith-Magenis Syndrome and shared it in honor of SMS Awareness Day.

This year we had 15 members of our community run online fundraisers and 4 members run in-person fundraising events which raised close to $40,000!  These much-needed funds will go towards PRISMS programs, education, and research. It was truly amazing to see so many take part in raising money for PRISMS.

On November 17th, SMS Awareness Day – we shared a united voice with several international SMS organizations (PRISMS, Smith-Magenis Syndrome Foundation UK, Sirius, SMS Australia, SMSRF) in a special video produced by Smith-Magenis Foundation UK which highlighted the spirit of celebrating SMS around the globe.

And let’s not forget the first-ever Smith-Magenis syndrome television commercial! We worked together with our partners at Vanda Pharmaceuticals to make sure that SMS was portrayed as accurately as possible in a 30-second time slot. It premiered on networks across the United States just in time for SMS Awareness Day.

Thank you to everyone for celebrating SMS Awareness Day with us and for sharing your stories all month! It was wonderful to be able to scroll through social media and see so many joyful and supportive posts from our SMS community. We saw so many messages from the SMS community across social media – it was truly heartwarming to see our community at work. Looking at our analytics, we reached over 10,000 people with our social media content on Facebook and hit 30,000 impressions on Twitter! We also mailed over 1,000 pieces of Awareness materials.

The energy and enthusiasm from our SMS community will propel us into the new year with a renewed excitement for making our voices heard.  Remember, you don’t have to wait until November to raise awareness about SMS – we can do it together all year long!

Interested in volunteering on PRISMS Awareness committee? Email for information on how you can get involved in helping to spread awareness in your community!