2017 Cure the Cycle Challenge

Mother and art teacher, Debi West, tells her story of inspiration and hope
in memory of her son, Croy, whose life was cut short by urea cycle disorder.

Help us conquer a killer

Children and adults with urea cycle disorders have a deficiency in one of six enzymes located in the liver which remove ammonia from the bloodstream. Ammonia is normally created in our bodies as a by-product of protein metabolism and is detoxified from the bloodstream by these enzymes. However, in individuals with urea cycle enzyme deficiencies, the toxic ammonia builds up in the blood where it can cause brain damage and, if untreated, coma and ultimately death.

Urea cycle disorders (UCD) are estimated to occur in approximately 1:14,000 births. This is is comparable to the incidence of childhood cancers, and means that every day a baby is born with a urea cycle disorder!

Many experts believe the estimate is low--children and adults are still unidentified, undiagnosed or misdiagnosed, with tragic consequences including developmental delays, seizures, brain damage, coma or death. Common misdiagnoses include sepsis and SIDS (sudden infant death syndrome) in infants, epilepsy, autism and hyperactivity in children, and drug intoxication, ADHD, and even stroke in adults.

 

 

The National Urea Cycle Disorders Foundation is the only organization in the world solely dedicated to saving and improving the lives of children and adults with urea cycle enzyme deficiencies. NUCDF is a lifeline to affected patients and their families all over the world, and a vital resource to the medical professionals who treat them. NUCDF is leading the fight to conquer UCD by:

  • Stimulating and supporting critical research to protect affected children and adults from brain damage associated with UCD, and leading the search for a CURE.
  • Educating families and medical professionals on the identification, treatment and management of UCD.
  • Raising public awareness so that no child or adult suffers or dies undiagnosed.
  • Educating public policymakers on the need for increased research and the needs of UCD patients and families.
  • Providing a caring community where those affected find information, support and Hope.

As you can imagine, our dream is for a cure, and we can't rest until we find it.

For more information, please visit the National Urea Cycle Disorders Foundation online at nucdf.org

NUCDF is a tax exempt nonprofit organization under
IRS code section 501(c)(3). Donations are tax-deductible.
100% of your donation goes to support NUCDF's research and education programs.

We are proudly listed on Guidestar, with a 5-star rating by GreatNonprofits.org

NUCDF is the recipient of the prestigious Child Neurology Foundation Advocacy Award


 

"He who gives when he is asked has waited too long."
— Lucius Annaeus Seneca
HEAD (9606-12488-201709211310) WIN-TVUELO308EK