My Nonprofit Reviews
Review for National Urea Cycle Disorders Foundation, Pasadena, CA, USA
My son was in a coma at the age of 8 due to hyperammonia. We had no idea what was happening -- we were fortunate to have a Pediatric Neurologist recall from his early days of medical school training that it was not Meningitis or Reye's Syndrome. He suspected it was a Urea Cycle Disorder. Via Ammonul and 2 rounds of blood dialysis -- his life was spared -- and eventually he awoke from the coma. It was after we received our first shipment of Cyclinex-2 that we found out of the NUCDF and its annual family conference. We attended the San Diego NUDCF and were so thrilled to meet Cindy LeMons! She is a dynamo and so helpful to all families.
I've personally experienced the results of this organization in...
attending the annual NUCDF conference.
If I had to make changes to this organization, I would...
Help with more funding.