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COMMUNITY WEBINARS

 

CureSHANK holds community webinars informing families and other stakeholders regarding CureSHANK's latest projects and efforts that are accelerating the process of developing and bringing to clinical trials treatments for Phelan-McDermid Syndrome and SHANK-related disorders. Recordings of past webinars are accessible here.

FAMILY STORIES

CureSHANK is producing a series of short videos sharing the stories of individuals living with Phelan-McDermid Syndrome and their families. Each video  highlights a particular aspect of the Phelan-McDermid experience. These videos are available to be used not only to spread awareness, but also as a tool to communicate, to regulators and others, the devastating impact of SHANK-related disorders and the resulting high level of unmet need. These videos are available here as well as on CureSHANK's YouTube channel.

Darus: A Regression Story (Phelan-McDermid Syndrome)

In this family story video, CureSHANK co-founder Abby Lievense shares the heartbreaking story of her son Darus's regression.

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