The Wiedemann-Steiner Syndrome Foundation

03/15/2026

Hi All, The 2026 conference website is live and registration is officially open. Please visit: https://wssfoundation.wixsite.com/conference for all pertinent details including registration, cost, lodging, transportation and frequently asked questions.

Please don’t hesitate to ask any questions here or dm us.

Looking forward to seeing familiar faces and meeting new families in October.

03/15/2026

The Spring 2026 Newsletter has been released. In this edition:

👏Thank you Annabel Corbett and Kim Lagravinese for your dedication and advocacy

🔬Research Update: Helen shares exciting news on $610,000 in research grants awarded

🗞️ Community Update: WSS Conference, WSS Quad, Rare Disease ReCap, Conference Reflections and Regional Ambassador Spotlight

🗓️ Save the Date

Flowers are blooming, the sun is shining and the WSS Foundation board is aflutter funding five new research projects and planning the 2026 WSS Foundation International Family Conference. This momentum is exciting and we can't wait for you to read all about it.  Before we get to all the happenings ...

03/15/2026

WSS Spring Community Newsletter -

Flowers are blooming, the sun is shining and the WSS Foundation board is aflutter funding five new research projects and planning the 2026 WSS Foundation International Family Conference. This momentum is exciting and we can't wait for you to read all about it.  Before we get to all the happenings ...

03/15/2026

The 2026 conference website is live and registration is officially open. Please visit: https://wssfoundation.wixsite.com/conference for all pertinent details including registration, cost, lodging, transportation and frequently asked questions.

Please don't hesitate to ask any questions here or e-mail [email protected]

Looking forward to seeing familiar faces and meeting new families in October.

01/01/2026

Happy New Year WSS Community! As we celebrate the Foundation’s 10th Anniversary, we are kicking off the year with four, $90,000 grant awards. The WSS Foundation is thrilled to announce our awardees:

🧬 Natural History Study

Dr. Rowena Ng and Jacqueline Harris of Kennedy-Krieger
Longitudinal Neurodevelopmental Trends and Clinical Natural History in WSS

🧬 Cell line Development

Dr. Jimena Andersen of Emory
Generation and Validation of Induced Pluripotent Stem Cell-Derived Cortical Organoids to Model WSS

Dr. Valerie Arnold’s of UCLA
KMT2A Pathogenic Variants in Neuron Development

Dr. Igor Ulitsky of Weizmann Institute of Science
Functional Evaluation of Fusion-Inducing ASOs in WSS Patient-Derived hiPSC Models

Thank you to our donors for making these grants possible and to board members Alex Gillett and Tobias Davis in partnership with our Scientific Advisory board for their diligence in thoroughly reviewing all the grant submissions and providing feedback and advice on which submissions most closely aligned with our goals.

In other news, WSS Families, save the date for this year’s WSS Foundation International Family Conference scheduled for October 23-October 25. Watch for details very soon!

12/02/2025

WSS Community Newsletter- Winter 2025 -

Gosh, another year coming to an end at warp speed. It's hard to believe! This year, the Foundation has focused on putting the building blocks in place to make some measurable progress in the coming year. By December 19th, we'll be announcing the recipients of our natural history study and cell line....

09/16/2025

Kudos to the Hillsboro R-3 School District and First Alert 4 for embracing and celebrating WSS Warrior Summer and bringing awareness to WSS. https://www.firstalert4.com/2025/09/16/hillsboro-r-3-school-district-celebrates-student-with-rare-genetic-disorder-she-continues-defy-odds/

https://www.facebook.com/donate/1499577814567047

Monday marked a very special day in the Hillsboro R-3 School District, as it celebrated one of its youngest students and brought awareness to her rare genetic disorder.

11/08/2024

We are live! Join us at https://www.youtube.com/.

The Wiedemann-Steiner Syndrome Foundation provides education, fosters community, and stimulates research to improve the lives of everyone impacted by WSS. Our Vision: Wiedemann-Steiner Syndrome will be understood globally and all those diagnosed will reach their greatest potential. Core Values: - Nu...