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Apr. 7, 2021

TOPIC: Featured News, Patients & Members

Ray Stevens is Taking Rare Disease Awareness to New Heights

Posted by Valaree DonFrancesco

In 2001, Ray was inspired by a family he met whose daughter was diagnosed with phenylketonuria (PKU). He translated his academic knowledge into clinical treatments and was able to help create two new medicines for this devastating rare disease. Then in 2007, his daughter, who was four years old at the time, was diagnosed with Kawasaki disease, a rare disorder where the immune system attacks the circulatory system. With time playing such a crucial part in his daughter’s diagnosis and eventual treatment, research from the Kawasaki Disease Clinic at Rady Children’s Hospital at the University of California San Diego saved her life.

With those experiences in mind, Ray decided to participate in the 2011 Marathon des Sables to bring awareness to PKU and the long journey to finding treatments for rare diseases. The 156-mile marathon across the Sahara Desert took six days in 120-degree heat in the deep sand. People from around the world were entranced by the “crazy guy” running across the desert for PKU. Ten years after completing that adventure, Ray is excited announce his new challenge which combines both his life goal of exploring the world and giving back to the rare disease community and does so at a whole new height—he is climbing the Himalayas and Mount Everest to raise awareness for all rare diseases!

With more than 25 million Americans living with a rare disease, there is a high probability that you know a rare patient or caregiver. The reality for these individuals can be frustrating as the average patient will take five to seven years to receive an accurate diagnosis. Ray hopes this climb brings an increased awareness of rare diseases and the great work of the National Organization for Rare Disorders (NORD), a fantastic organization dedicated to the identification, treatment, and cure of the over 7,000 rare diseases that have been identified to date.

You can keep up with Ray’s journey by following NORD on Twitter and looking out for news updates from the trip!