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Cadasil Together We Have Hope Non-Profit Organization

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Community Stories

5 Stories from Volunteers, Donors & Supporters

Vic S.

Client Served

Rating: 5

Great video for Rare Disease Day created. It hlep me cope with CADASIL.

Review from Guidestar

Client Served

Rating: 5

My blood test was negative and I am so relieved I don't have CADASIL. Thank you for your organization and support during the waiting period.

General Member of the Public

Rating: 5

I found the CADASIL foundation on-line & was so happy to see that more research & info available for CADASIL which I find most doctors don’t know anything about. I have to tell each doctor I go to what it
Is & take information to them. That is how I found the foundation on-line I was going to a new doctor for my hearing so I wanted to print off the info for the doctor.

Review from Guidestar

Client Served

Rating: 5

When I was first diagnosed with Cadasil I was scared and broken. I had no where to turn!!! I had search the internet for a while and came across Cadasil Together We have Hope..I was a bit scared to call but in the end did so!!! They were so welcoming and answered all my questions. They eased my fears and treated me like family! They have helped me find doctors and are a great support group!!! I will always be grateful to them for easying my fears and helping my family learn to cope!!

1

Client Served

Rating: 2

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:

https://www.facebook.com/media/set/?set=a.2155940465356.123755.1451810825&l=4bc9a14d74&type=1

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.

Review from Guidestar