In this edition:

  • Meet Wendy Hocking, new Chair for and grandmother to William
  • Welcome to the Scientific Advisory Board Alysson Muotri!
  • IDefine leadership recognized by Global Genes!
  • Plus a roundup of other KS-related feel-good news

Passionate, experienced KS grandparent assumes leadership of

Wendy Hocking has spent a good portion of her career working help people struggling with homelessness and related challenges. It’s work that she is passionate about.

However, in April she took on a new job that she says “makes me tick, tick, tick inside, I could do this all the time.” That job is as the unpaid chair of based in the United Kingdom.

Wendy’s first grandchild, William, was diagnosed with Kleefstra Syndrome just after his first birthday in 2014. Earlier this year, while surfing for updates she saw that its founders, Chris and Fiona Heslehurst, were stepping back from their chair and trustee roles to concentrate more on their family 12 years after creating the organization and helping countless families.

“I’ve managed charities throughout my career, so I couldn’t help but think how wonderful it would be if I could help families and people, like William, who have difficulties and special educational needs who need extra support. I thought it would be a good thing, so I couldn’t really say no, and luckily they wanted me, which is nice.” 

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IDefine Leadership Recognized

Global Genes, global non-profit advocacy organization for individuals and families fighting rare and genetic diseases, announced this week their 2021 RARE Champions of Hope Nominees.  We are thrilled to announce that our CEO, Geoff Rhyne, has been recognized as a Rising Star Nominee within the rare disease space!  Geoff was also featured in a Rare Leader profile in Global Genes' online publication, RARE Daily.   

Welcome to the Scientific Advisory Board!

Dr. Muotri is a professor at the Departments of Pediatrics and Cellular & Molecular Medicine at UC San Diego. He is also the Director of the Stem Cell Program and Archealization Center at UCSD. Dr. Muotri earned a BSc in Biological Sciences from the State University of Campinas in 1995 and a Ph.D. in Genetics in 2001 from University of Sao Paulo, in Brazil. He moved to the Salk Institute as Pew Latin America Fellow in 2002 for a postdoctoral training in the fields of neuroscience and stem cell biology. His research focuses on brain evolution and modeling neurological diseases using human induced pluripotent stem cells and brain organoids. He has received several awards, including the prestigious NIH Director’s New Innovator Award, NARSAD, Emerald Foundation Young Investigator Award, Surugadai Award, Rock Star of Innovation, NIH EUREKA Award, Telly Awards among several others.


Quick Clips on Kleefstra

  • RISE ABOVE FOR KLEEFSTRA SYNDROME AWARENESS DAY!  The countdown is on! Hundreds of supporters have donated, and hundreds are attending!  Will we "see" you there?  Join the celebration!
  • COMMUNITY SUPPORT: Interested in being a family ambassador?  Email us at!

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