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Daniil Zamorin wrote this story, but is a native Russian speaker. The ULF has helped Daniil edit his story to be more easily understood by an English-speaking audience. He welcomes people to reach out to him, and the ULF would be happy to facilitate the connection. Please email [email protected] to be connected to Daniil. Hello, …
By Ruth Tindugan, [email protected] 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 …
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 …
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 …
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 …
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 …
Dylan was born on April 15, 2009, Daddy’s Little tax Deduction! For the first 5 months he progressed like a normal child, until one day, which seemed like a case of collie, he was taken into Children’s Hospital of Pittsburgh, by his new, first time mom. The visit proved to be anything than routine. After …
From PatientWorthy.com After coming back from the Global Genes conference, Kristie was convinced that establishing a foundation was the right next step to advocate for a cure for Refsum Disease. With the help of other patients and family, Global DARE Foundation was formed with 5 board members. DARE stands for Defeat Adult Refsum Everywhere. The first board …
“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 …
by Jen Moss, originally posted here: Mountain Parent Our story pivots around one precise moment. A phone call one afternoon in May 2016 almost four years ago. Every life event before and every moment since is redefined now in relation to the information we received that afternoon. The rest of that particular day is a …
