National Urea Cycle Disorders Foundation
Rating: 4.95 stars 19 reviews
Location: 75 S Grand Ave Pasadena CA 91105 USA
Results: Recipent of 2010 Child Neurology Foundation Advocacy Award of Merit, recognizing outstanding achievements on behalf of children with developmental and neurological disabilities.
Target demographics: Save the lives of children and adults affected by urea cycle disorders
Direct beneficiaries per year: over 700 patients, their families and medical professionals
Geographic areas served: International
Programs: research, education, support
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As one of the original members of NUCDF back more than 20 years ago, I can hardly believe the organization that it has become. From a tiny grassroots organization with a handful of families that could barely make it through the day because their children were so sick, never mind run an organization - NUCDF has become a thriving, educational, research organization of the highest caliber. The quality of care that it gives to afflicted families is bar none and I fully attribute this to its director Cindy Le Mons. Her passion and commitment is unequaled at all levels as exemplified in the hours spent helping family members get the help they need, to her intelligence, diplomacy, and executive business skills. I do not believe that any one individual knows as much as she does about this disease. This leadership has attracted the highest caliber medical professionals. The results speak for themselves. The treatment options available today, are sophisticated and successful to the point that one could say that the survival rate of a child diagnosed with this disease would have almost 100% survival rate. As a family, we know that if we are ever in trouble, any where in the world, that Cindy will answer the phone day or night and get us in touch with the medical professional or treatment we need. We know that the organization is strong and well supported financially, professionally and the interaction between families and the professionals is solid and consistent. This has resulted in new research design, discovery and growth far beyond our tiny numbers.
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As the former VP of Clinical Operations for a small biotech, I was introduced to the NUCDF in affiliation with my company's UCD research program. Cindy LeMons, as well as several members of the UCD Consortium provided critical input and expert advice to aid in designing feasible studies for this rare and very special patient population. Earlier this year, I stepped down from my executive position in order to devote more time to my personal endeavors including helping non-profits with high impact potential, like the NUCDF. When I attended my first NUCDF Family Conference in June 2008, I not only learned all the ways the NUCDF has supported UCD patients and their families through research, awareness and education, but I had the rare experience of meeting and listening to the testimonies of dozens of UCD patients, their families and the physicians and nurses who treat them. In my 25 yrs of working in clinical research, I had never witnessed such a collaborative and meaningful exchange of data and information with the sole purpose of finding a cure for UCD. That meeting as well as those before and after were made possible by the NUCDF, as well as the testimonies of how the long, loving arms of this special organization has and continues to reach out to the countless children and adults throughout the country who are affected by UCD. I am privileged and honored to be an active donor and volunteer for the NUCDF.
I've personally experienced the results of this organization in...
hearing direct feedback from UCD patients and their families who have received, in many cases, life-saving information and support.
What I've enjoyed the most about my experience with this nonprofit is...
The determination and drive to find a cure for UCD and actively provide support to these patients and their families until such time that a cure is found.
The kinds of staff and volunteers that I met were...
the dedicated Executive Director (Cindy LeMons) and some of the board members.
If this organization had 10 million bucks, it could...
enable more targeted UCD research and save more lives by expanding their current reach.
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