Aicardi-Goutières Syndrome: What You Legit NEED to Know
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere
United Leukodystrophy Foundation
United Leukodystrophy Foundation
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.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Leukodystrophy
Hope With Lo: Raising Awareness of Zellweger Spectrum Disorder
Sara Kear and Jake Kaufman always knew that they wanted to start a family. So they did, welcoming into the world their beautiful children: Lola,
Trying to Enjoy Life with Daughter with Zellweger Syndrome
Unfortunately, doctors and scientists are still learning about Zellweger syndrome, a rare multisystem genetic disorder. But this can be incredibly difficult for families whose children
Family Raises Zellweger Syndrome Awareness
Kris and Carla Thompson were so thrilled when they learned that they would be expecting a daughter. When Lucy was first born, Carla describes her
Medicaid Fund Cuts Might Affect Transportation For Those Who Need It
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
The Bittersweet Story Behind Jackson’s Honest Chips
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
