My Nonprofit Reviews
Cindy Crowe Shrum
Review for National Urea Cycle Disorders Foundation, Pasadena, CA, USA
This foundation has truly been a beacon of light and hope for our family. Our grandson, Anders Ericson Leon, was born in November 2010 to our daughter, Amanda, and her husband, Eric. To our overwhelming sadness....Anders lived only 18 days. The diagnosis was OTC which none of us had ever heard of before. As you can imagine, we were all on our computers trying to find out as much information as we could possibly find out about this terrible disease and what we could do to save our grandson's life. In our research we got the name of Cynthia Le Mons and the NUCDF. Needless to say, we called her from the hospital and Cynthia spent hours talking to us and giving us information to help us try to understand this disease. Unfortunately we were not able to save the life of our darling angel, Anders, but at least we had found an organization that would continue to support us. My daughter and I have stayed in contact with Cynthia Le Mons and the NUCDF as we have had so many questions about OTC and what the implications were for our future. We know that when we call her....she will respond in a timely manner and when we email her....we know that she'll get back to us quickly. This has given me great comfort during the difficult days that have passed since we lost Anders. Thank you, Cynthia and NUCDF...please know how much you have meant to me!
I've personally experienced the results of this organization in...
helping our family understand OTC and its relevance to our future.
If I had to make changes to this organization, I would...
make no changes.
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