FAQ

What are the functions of the ULF?

  1. The ULF maintains a 24-hour hotline (800-728-5483) to provide support to families of those with leukodystrophies, offering advice on both medical aspects of the diseases as well as on how to cope.
  2. The ULF provides educational resources on the leukodystrophies. These include fact sheets on the disorders (available for download on this website as well as in hard copy) and an extensive library of video materials.
  3. The ULF is deeply involved in research on leukodystrophies, and works closely with physicians and scientists throughout the world. The ULF is consulted on many of the clinical studies related to the leukodystrophies, and can put patients in contact with physicians that are running relevant studies.
  4. The quarterly newsletter ULF News provides timely and professionally prepared articles relating to the leukodystrophies. This newsletter is available online or in hard copy.
  5. The ULF runs an annual conference which is attended by nearly 300 people offering direct contact between professionals and families.

How does the ULF work with doctors and scientists?

The ULF provides available funds to research projects that are approved by the Medical and Scientific Advisory Board. In addition, the ULF is directly involved in field and laboratory studies. This includes assisting in patient recruitment for clinical trials by alerting members of the ULF to new clinical trials that might be of interest to them.

How is the ULF funded?

The vast majority of funding is provided by the members through dues, honorariums, memorials, and local fund raisers; United Way designation and the Combined Federal Campaign [#10575] is available. We are very proud of our operating costs, which over the past years have averaged only 12%.

How could your support help children and families with the leukodystrophies?

The motto of the United Leukodystrophy Foundation (ULF) is “You Are Not Alone.” Many patients and families face serious and progressive problems without knowing the cause and without being able to communicate with others who have been through similar difficulties. In addition to this devastating lack of moral support, these children are also denied access to therapies that now exist or are evolving. Also because of the rarity of these diseases and the lack of knowledge of them, insurance and education benefits are denied or delayed. The United Leukodystrophy Foundation needs your support to remedy this tragic deficiency. A videotape is available for classroom, media, and group presentation. We are confident that general awareness of the existence of these serious problems, combined with the realization that they are no longer hopeless, will lead to widespread support; and then prove to be of great benefit to these patients who are helpless and alone.

We can not achieve these goals alone. We need and ask for your assistance. To help and for further information please contact us.