We are teaming up with Zevra Therapeutics to launch an awareness campaign during the month of October to improve the diagnosis of urea cycle disorders (UCDs). Our goal is to highlight the critical importance of promptly checking blood ammonia levels and using proper testing techniques.

Resources on recognizing and testing for hyperammonemia are featured on the campaign website, checkammonia.com.

Quickly diagnosing UCDs is critical. Toxic ammonia levels can rise rapidly in affected individuals if left untreated, causing coma and death.

Newborns with severe UCDs typically become catastrophically ill within 36-48 hours after birth. It is estimated that up to 20% of sudden infant death syndrome (SIDS) cases may be attributed to an undiagnosed inborn error of metabolism such as a UCD. Adults with undiagnosed UCDs may present at emergency rooms with staggering, confusion, combativeness and disorientation that is mistaken for alcohol or drug intoxication, and many die.

The campaign’s primary message is that a blood ammonia test, performed promptly and properly, can save lives. Downloadable campaign resources focus on (1) Recognizing the signs of UCDs and promptly ordering a test and (2) Following proper test procedures.

The Cure the Cycle event successfully raised over $55,000 for the National Urea Cycle Disorders Foundation. In-person riders met in Napa Valley to ride for the cure, while others took part virtually. 

Thank you to each and every one of you that helped to make this event a success! Click below or check out our socials to see more pictures from the event! There is still time to donate to the Cure the Cycle event. You can donate here.