What would you do if your child was struck with an incredibly rare disease? My friend #GingerIrvine and her husband founded a patient's advocacy organisation to fund research into the #Parkinsons-like disease #neuroacanthocytosis and support patients - like their daughter Alex - who live with #NA. Ginger's been recognised with a major award by the International Parkinson and Movement Disorder Society... its first recipient since Michael J Fox: https://www.mdscongress.org/2023-Awardees#public #rareDiseases #advocacy