Located in DeKalb, Illinois, the United Leukodystrophy Foundation (ULF), is a nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social services, and genetic counseling; establishing a communication network among families; increasing public awareness and acting as an information source for health care providers; and promoting and supporting research into causes, treatments, and prevention of the leukodystrophies. Leukodystrophies comprise a group of genetic nervous system disorders affecting the myelin sheath, which insulates the axon through which nerve impulses are conducted. Incorporated in 1982, the United Leukodystrophy Foundation is solely supported and funded by donations.
Here is a list of conditions this partner raises awareness and advocacy for:
Maddie Holt from Everett Washington is a 5-year-old with severe disabilities. She can barely hear or see, and she certainly can’t walk or talk, reports
Everyone with dietary restrictions knows the struggle of going to the grocery store, scanning the nutrition, and sighing when it doesn’t quite meet the requirements
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Imagine this: two elementary students are in the restroom at school, smoking a bowl. And then, the principal walks in. Rather than flying off the
Peter and his wife Ashleigh call their son Riley their “little fighter.”This is his nickname because he made it to his first birthday, which was
Happy Friday Patient Worthians! PW Contributor Nolan is back in our Video Series with his details on dystonia treatment. We also have some cool info on EDS gadgets!
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