This is the story of Reese Brown, a 9 year girl from New Jersey who was diagnosed with a rare infantile wasting disease that robs children of the ability to communicate and causes dementia and muscle weakness called Metachromatic Leukodystrophy. This is her story. Reese passed away on September 30th, 2013 after a life long battle with MLD.
3 days ago
Adult Refsum Disease is an ultra-rare Leukodystrophy. Global DARE Foundation was recently founded to support individuals with Adult Refsum Disease. Our mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease. You can find out more about Adult Refsum Disease at our website: https://www.defeatadultrefsumeverywhere.org/ We are hosting our first conference in London on May 15, 2020. We can use help finding more patients. Please share with anyone that may benefit. We will also be at the United Leukodystrophy Foundation conference in June.