The Inspire Hope Foundation for Urea Cycle Disorders, Inc. is a non-profit organization which was founded in honor of our daughter, Sophia, who was diagnosed with a Urea Cycle Disorder (UCD) when she was four days old.
Our families worked together to create the Inspire Hope Foundation to support Sophia and the community of other children facing the challenges of living with a UCD every day.
What are the goals of the Inspire Hope Foundation?
- To raise funds in support of the ongoing research efforts to find new medications, treatment options and a cure for urea cycle disorders.
- To raise awareness about urea cycle disorders. Most people do not know what a UCD is unless a family member or friend is affected.
- To educate individuals and medical professionals about the presenting symptoms of the disorders to prevent delayed diagnosis. A timely diagnosis can mean the difference between life and death.
- To support Newborn Screening awareness programs.
Individuals living with a urea cycle disorder face multiple challenges on a daily basis. Many have a feeding tube to aid in the administration of medication and formula. On a daily basis, they must adhere to a very strict medication and diet regimen. Things that are difficult to control can cause them to become metabolically unstable very quickly – coming down with a fever or stomach bug; eating a bit too much or too little protein; not consuming enough calories each day. Liver function must also be monitored regularly, as many people with UCDs require a liver transplant at some point in their life.
