My Nonprofit Reviews
Review for cureCADASIL, Plainsboro, NJ, USA
The CADASIL Association is not only fighting for research and a cure, for this little known genetic disease, in an array of different ways, but is helping both patients and family/caregivers to be able to cope with their huge number of uniquely varied issues on a day to day basis. Additionally, they are striving for mental, emotional and physical attention and treatment of both, the patient and caregiver. It is critical that both be considered, and CADASIL Association is accomplishing this with Facebook support, interaction with patients on Facebook, email and messaging patients and caregivers online, teleconferences, along with a variety of other supportive measures. For every person with undetected CADASIL, an entire family’s generations are at risk. With all children that follow to have a 50-50 chance of inheriting it, we need the public to be educated about CADASIL, now…not after they have children. They need to be able to make an informed decision about having children if they have CADASIL. In addition that undetected person’s siblings and parents may also be carrying the genetic disease. One detected person represents his/her entire family and generations to come. It is imperative that the info gets out to not only the medical arena, but to the common public where symptoms can be recognized and patients step forward for diagnosis. Then the medical community can begin to assemble better databases and accurate information to build on for research. The more informed individuals that can recognize their own symptoms the faster the medical field will be exposed to it, and physicians will begin informing themselves in order to treat their patients. Then they will have an accurate source of information to refer to. The CADASIL Association is working to make this happen. CADASIL is a horrific disease with very few answers, and no cure. The Association is dedicated to bringing CADASIL to public awareness, which in turn brings to the medical community. Funding is based strongly on the numbers of people presenting CADASIL. Where none of us want even one more diagnosis of someone having CADASIL, it is still going to happen. To be diagnosed, along with others who are being voluntarily diagnosed, perhaps the expanded funding will find a cure during our generation.
If I had to make changes to this organization, I would...
Have a larger database or point of patient resource of patients and of their immediate family. Personal history of each CADASIL patient. Database having ability to possibly see a larger picture with this much info. Comparison study as result of database info.
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