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Share your story


By Ruth Tindugan, What sounded like the screams of a duckling pulled me out of the deep pond of sleep. At one o’clock in the morning, Arne was yelling again. I nudged my husband, but he did not budge. Most of the time, I would stagger into his bedroom and check on him. My …

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Heather & Holly, ALSP

By Heidi Edwards I’m Heidi Edwards, President and founder of Sisters Hope Foundation, a non-profit organization supporting families struggling with Hereditary Diffuse leukodystrophy with spheroids or HDLS. HDLS is now known as Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia, or ALSP. I am also a caregiver for my twin sister Holly who has the …

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Axel Riordan, MLD

By Alexandra Worth Axel Riordan was born October 15, 2017. He was a healthy growing boy, hitting all his milestones on time. Around 18 months old Axel started developing problems while walking; locking knees, stumbling, eventually falling a lot. It all progressed slowly at first so at his two-year checkup with his pediatrician I mentioned …

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Shari S., ALD

Being part of a family that has endured the devastation of ALD since 1959 when my mother’s brother lost his battle and then losing both my older brother in 1972 and my younger brother in 1979. Knowing since 1987 when I was 18 years old that I am a carrier set the stage for more painful …

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Amera Reed, ACER3

by Shannon Reed Amera is our sweet 3 year old daughter who battles an extremely rare genetic disease called ACER3 related early childhood onset progressive  Leukodystrophy. There are only about 20 known cases of this type worldwide!  Our daughter was diagnosed with this progressive disease at age 2. She was initially presumptively diagnosed with other …

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Sam Buck, VWM

“Until February 2013, our 2-year-old son Sam was completely normal child, no problems with his pregnancy or birth, he met every milestone, and overall was healthy. He would trip and fall a lot, but we never thought anything of it. Then on February 23, 2013, Sam was playing on our bed. He fell off and …

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