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The United Leukodystrophy Foundation Inc

Rating: 1 stars   1 review 607


224 N Second St Room Ste 2 Dekalb IL 60115 USA


The united leukodystrophy foundation is dedicated to helping children and adults who have leukodystrophy and assisting family members, professionals and support services that serve them. The ulf is committed to the identification, treatment and cure of all leukodystrophies through programs of education, advocacy, research and service.


The united leukodystrophy foundation serves in excess of 15,000 members, both families and professionals in all fifty states and over 50 foreign countries. Ulf maintains a 24-hour hotline to provide support, and offer advice on both medical aspects and how to cope. The ulf news, a quarterly newsletter provides timely, professional articles relating to the leukodystrophies. Over 300 people attend an annual conference allowing families and professionals to interact. Educational resources are provided on the leukodystrophies in the form of fact sheets on the disorders and an extensive library of video materials.

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Reviews for The United Leukodystrophy Foundation Inc

Role: General Member of the Public
Rating: 1 stars  

This is a membership nonprofit which requires annual dues. This organization was sent a certified letter requesting a copy of the by-laws in order to discover how they add people to the Board of Directors. The certified letter was sent by a dues-paying member. The dues-paying member was completely ignored. The issue has to do with two organizations who both seemingly support CADASIL (a genetic disease) whereby a Board member of one is now on ULF's Board also, and who took a significant amount of money raised by members of the other organization for that organization and gave it to ULF. This gives the appearance of the commingling of funds. In addition, the other organization got address information from the ULF and gave it to the other organization when the other organization had been noticed in writing of the address to be used. Both these instances lead to the appearance of legal impropriety and possibly the misuse of public donations.

Ignoring a dues-paying member who sent a certified letter request for information relative to the organization does not appear seemly or appropriate at all.

I've personally experienced the results of this organization in...

As stated above; although I am not the dues paying member, I am related to the dues-paying member; we worked together to raise the funds which were used as described above.

If I had to make changes to this organization, I would...

Publish all documents including by-laws on their web site, updating such documents as necessary. Respond to certified mail requests for information. Refuse to engage in even the appearance of commingling of funds and the appointment of persons to a Board of Directors which gives an appearance of having "purchased" such an appointment.

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How much of an impact do you think this organization has?

A little

How did you learn about this organization?

Sought out internet information about the disease this nonprofit is supposed to support.

When was your last experience with this nonprofit?


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