This is Ruby! She is a Rare Ruby. She was diagnosed with a rare form of Leukodystrophy called H-ABC. There are less than 100 people diagnosed with this neurodegenerative, debilitating brain disorder. She was only 16 months old. Since then, we’ve been trying to spread awareness like wildfire. We made her Facebook page, bracelets, t-shirts, and we entered Ruby into a beauty pageant! We stay busy in other ways too, like her 5-6 appointments every week! Participating in research at CHOP is also a hobby of ours! Ruby faces many challenges daily, but we never miss an opportunity to inspire, educate, and support others! With a smile on her face and a giant support group in her corner, there’s nothing she can’t do! Meet A Rare Ruby, Miss Spirit, and Tiny Toddler Miss Pennsylvania, a true fighter!
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.