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2 reviews

Review for The United Leukodystrophy Foundation Inc, Dekalb, IL, USA

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.

Will you volunteer or donate to this organization?


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?


Role:  General Member of the Public & Tried to obtain relative information which should not be shielded from public view.

Review for Cadasil Together We Have Hope Non-Profit Organization, Round Rock, TX, USA

Rating: 2 stars  

This is part 1 of a review of this organization. I have serious concerns with regard to CTWHH. They were addressed in writing to the organization which promised by e-mail to respond but did not. The letter was sent certified and can be viewed by Facebook public link at:

As it has been entered as a jpeg file, it needs View Enlargement to read it well. CTWHH have taken some of the issues of the letter and have improved, but serious concerns remain.

I did submit a formal request for investigation for the possibility of Unauthorized Practice of Law to the State Bar of Texas; the follow-up date with the State Bar appears to be around December 2011.

A second letter of inquiry to CTWHH is being prepared, and likely a request for investigation to the Texas Attorney General's office which did inform me that my concerns might be valid upon investigation (however, the outcome of any such investigation is never guaranteed). This has to do with CTWHH taking the proceeds of a fundraiser held specifically for them and giving those proceeds to another 501(c)3 entirely. I am concerned with regard to the propriety of that action and feel investigation is needed.

This is a very young nonprofit, and the Board doesn't seem to recognize that there is help and free help for them to improve. They have not utilized possible volunteers and appear to discourage help. This type of documentation has been retained by me.

They represent a disease (CADASIL) which is genetic and runs throughout my family and so my interest in their competence is very deep. Also because it may be that a significant number of Multiple Sclerosis cases may not be MS but rather CADASIL and since some of us who are activists are working to bring this awareness to the MS comunity, CTWHH would have to be properly prepared for a possible influx of new constituents and their failure or refusal to correct or expand would not serve well.

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

I believe my desire to participate in this organization has been wrongly categorized as unjustified attempts to tarnish its' efforts. Primarily, its' efforts appear merely educational through their web site. I am at all certain that they are meeting their Mission Statement.

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

Continue to do as I have done, and will do again; name the issues that concern me, submit them in writing, make them public for all to see, and to request assistance from authorities with regard to issues that can only be rectified in that way should the authorities agree they exist.

Role:  Client Served & As stated, I have worked to share my information with them to seek improvement.