Gavin is a 7 year old boy diagnosed with PMD around 6 months old. CHOP was great at getting him diagnosed early and keeping him healthy. He goes to HMS school in Philadelphia. He is learning to drive a power chair and is starting to use a device to communicate. He's come far in his 7 years and does it with a smile..most days :)
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.