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 life-saving information on treatment and management to both medical professionals and affected families.
Awareness: Raising awareness so that no child or adult suffers or perishes from lack of diagnosis and treatment.
Community: Connecting families with urea cycle disorders and 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. Founding Partner of the NIH Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium supporting research and centers of excellence for clinical treatment of children and adults with UCD. Founder of the CureUCD Center for Preclinical Therapeutic Discovery to catalyze development of a cure and help drive new treatments for UCD through the research pipeline.
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
Professional with expertise in this field
I first heard about NUCDF 12 years ago when my son was diagnosed with a different rare disorder that also has hyperammonemia. The executive director was very helpful in explaining hyperammonemia to me and sending us in the right direction. A couple years later, I started a non-profit with other families for my son's disorder. NUCDF has mentored our organization and partnered with us on a number of projects. I am thankful for their advice, support, partnership and friendship. I am a more informed parent as well as a better leader because of NUCDF and would recommend them for 2012 Top-Rated Awards.