Speed Dating for Scientists
Ginger, Despina, & Adrian Attend Aspire Biosciences Event in London
by Despina Dinca
No, seriously, it is just like speed dating! And it’s meant to be benefits patients, their families and cares on one side, and the scientist on the other side. Read on...
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Ruth Walker Visits Portland, Oregon, USA
Ruth is Visiting Scientist and Meets with XK Family
by Ruth Walker
 Ruth Walker shares of her experience as a visiting scientist to the Portland Veterans Affairs Medical Center and her corresponding visit with an extended Oregon family with XK disease.
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Voice Workouts - New Session
Maintaining and improving oral communication is an important therapy for patients diagnosed with VPS13A or XK disease.
by Alex Irvine and Elina Tripoliti
 We’re back with a new session! Maintaining and improving oral communication is an important therapy for patients diagnosed with VPS13A (chorea-acanthocytosis) or XK (McLeod) disease.
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Patient Stories - Gary Gans
A Patient Advocate for Persons with Disabilities
by Gary Gans and Despina Dinca
 Gary Gans, who has VPS13A disease, shares his advocacy efforts on behalf of all people with disabilities.
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The topics of the two forums were nutritional challenges among people with feeding dystonia and the latest developments in the research of VPS13C in July and October, respectively.
Nathan Akerhielm shares how heart issues led to his diagnosis of XK disease at age 25.
Long term friend and VPS13A patient Pete Clark who lives in Southend, Essex, UK wrote to us about recent activities. 
