NATIONAL UREA CYCLE DISORDERS FOUNDATION

Rating: 4.94 stars   16 reviews

Issues: Health, Cancer

Location: 75 S Grand Ave Pasadena CA 91105 USA

Mission: Our mission is to save the lives of children and adults suffering from the catastrophic effects of UCDs. We do this through REACH: Research: Stimulating research for new treatments and a cure. Education: Providing information on treatment and management to both medical professionals and affected families. Awareness: Raising awareness so that no child or adult goes undiagnosed. Community: Providing support for all those affected. Hope: Together, we WILL conquer urea cycle disorders.
Results: Recipent of 2010 Child Neurology Foundation Advocacy Award of Merit, recognizing outstanding achievements on behalf of children with developmental and neurological disabilities.
Geographic areas served: International
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EIN 41-1661444
626-578-0833
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Community Reviews

Rating: 5 stars  

2 people found this review helpful

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.

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2009-3-01

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