United Leukodystrophy Foundation Email Format

FundraisingIllinois, United States11-50 Employees

The United Leukodystrophy Foundation, a nonprofit organization founded in 1982, focuses on leukodystrophies, a set of genetic nervous system disorders affecting the myelin sheath. It provides patients and families with information and assistance in locating medical care, social services, and genetic counseling, while fostering a network among affected families. It also serves as an information source for healthcare providers and supports research into causes, treatments, and prevention.

Based in Dekalb, Illinois, the foundation operates as a small nonprofit funded solely by donations. In addition to patient support, it acts as an information resource for healthcare providers and works to raise public awareness about leukodystrophies. In September 2023, the organization announced the appointment of Diane Fennimore as its Executive Director, marking a notable leadership development.

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