The Wiedemann-Steiner Syndrome Foundation provides education, fosters community, and stimulates research to improve the lives of everyone impacted by #WSS.
Joined January 2017
- Tweets 297
- Following 733
- Followers 244
- Likes 363
136 Photos and videos
WSS Community Newsletter - mailchi.mp/c942abf598bb/wss-…
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WSS Community Newsletter- Winter 2025 - mailchi.mp/27a2c7eba556/wss-…
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WSS Community Newsletter- Fall 2025 - mailchi.mp/1bf57b420a3d/wss-…
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The Wiedemann-Steiner Syndrome (WSS) Foundation retweeted
3 Apr 2025
WTENNIS | (NEWS) Tufts Women's Tennis Signs Newest Team Member Reese Barile Through Team Impact
#JumboPride // #GoJumbos // #whyd3 // @TuftsUniversity // @GoTeamIMPACT
gotuftsjumbos.com/news/2025/…
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Christina O’Keeffe & Libby Woolford have spent this wk at @_rare.x_ & @globalgenes Week in Rare gathering tools and networking. They were also able to spend time with the Foundation’s newest SAB member, Dr. Maya Chopra, a Clinical Geneticist & Pediatrician at Boston Children’s.
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We have hit $37,500. Next stop, $50,000!
Share this post with your friends and family, so we can meet our International Wiedemann-Steiner Syndrome Awareness Day goal and fund the next phases of #WSS Research. #WSSday
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Numbers are starting to roll in from events held this past weekend and we're at $35,000 and counting!
We need your support to meet our International Wiedemann-Steiner Syndrome Awareness Day goal of $50,000 to fund the next phases of #WSS Research. #WSSday
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We are half way there! Thank you for the generosity. We are so lucky to have such a great community of support for our #WSS Warriors.
Spread the word, and let's meet our #WSSday goal of $50,000 to fund the next phases of #WSS Research.
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Yesterday was #WSSday. Together, we have already raised $22,500. Help us make International Wiedemann-Steiner Syndrome Awareness Day a success by helping us reach our goal of $50,000 to fund the next phases of #WSS Research.
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Yahoo! We just hit $20,000 in donations to help us fund the next phases of #WSS Research. Remember to share this post on your feed, to help us reach our goal of $50,000 by the end of #WSSday.
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$ 1 7 , 5 0 0 is in the books. Thank you for all you are doing to make #WSSday a success. Keep up the good work and help us reach our goal of $50,000 to fund the next phases of #WSS Research.
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You all are amazing! We just passed the $15,000 mark.
Help us make International Wiedemann-Steiner Syndrome Awareness Day a success by helping us reach our goal of $50,000 to fund the next phases of #WSS Research. #WSSday
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We are now at $12,500. Help us make International Wiedemann-Steiner Syndrome Awareness Day a success by helping us reach our goal of $50,000 to fund the next phases of #WSS Research.#WSSday
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Keeping our worldwide community connected isn't always easy, but with the help of technology: the website our Speakers Series, social media outlets, & streaming of our conferences, are ways our families are able to keep apprised of vital news and communicate with one another.
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Breaking news on this WSS Awareness Day! The WSS Foundation funded grant project exploring malleability of WSS postnatally has wrapped up and Dr. Bjornsson and Tinna Reynisdottir were able to perform gene recombination succesfully on mice in utero: buff.ly/3ECd5cJ
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We just reached the 20% mark. Keep up the great work everyone. Please help us reach our International Wiedemann-Steiner Syndrome Awareness Day goal of $50,000 to fund the next phases of #WSS Research. #WSSday
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Today (September 15) is #WSSday. Together, we have already raised $5,000. Help us make International Wiedemann-Steiner Syndrome Awareness Day a success by raising $50,000 to fund the next phases of #WSS Research.
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Your IMPACT is making a considerable difference. Last year, the #WSS Foundation began funding a $20,000 grant to Dr. Ng and Dr. Harris of the Kennedy Krieger Institute to develop a cognitive profile for those with WSS. Check out their video update at buff.ly/3R8NHCE.
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For WSS Awareness Day on September 15, you can support your WSS Warrior and the greater WSS community (patients, families, physicians, researchers and drug developers) by enrolling your child with Rare-X (buff.ly/3EILuqp), our WSS registry. buff.ly/3R1WlD2
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Apply by Friday!
Do you have a couple hours to be a virtual #volunteer for the WSS Foundation?
Learn more and apply by June 30 at buff.ly/43L0L4R
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