United Leukodystrophy Foundation (ULF)

For many years, the CTX community has been well served by the United Leukodystrophy Foundation. The ULF has provided patients, caregivers, and medical professionals in the CTX community with a place to call “home” with education, support and countless services.

The United Leukodystrophy Foundation’s vision is: “to meet the needs of patients and families, whether newly diagnosed or living with a leukodystrophy. Through unified collaboration with advocacy groups, medical and research professionals, and pharma/biotech companies, we provide support, networking, and education to help navigate the journey of the disease.”

This last year, the ULF truly lived out that vision by providing the support needed to help several individuals in the CTX community to explore the need for, and interest in, the development of a specific advocacy group for CTX. Throughout this process, the ULF team gave generously of their time, resources, and experience to assist in every step necessary to see the group through to becoming an official 501C3 organization — CTX Alliance.

The CTX Alliance, and the CTX community, are incredibly grateful for the support of the ULF and the opportunity to continue our relationship in the future to work toward the ULF’s mission to: “provide support to the leukodystrophy community and enable platforms to accelerate improving patient quality of life and finding cures.” As in years past, CTX will continue to be represented at the annual ULF Family Conference and Scientific Symposium. The CTX Alliance is working together with the ULF and our Medical Advisory Board to provide exceptional information and important connections for the CTX community!