Scroll
To Top

Jun. 11, 2021

TOPIC: Patients & Members, Research, Advocacy, Patient Stories

Ray Stevens’ Rare Disease Reflections from 22,000 Feet

Posted by Valaree DonFrancesco

Ray Stevens, rare disease researcher, advocate, and adventure seeker, has concluded his Himalayas and Mount Everest trek to rare awareness for NORD and our community. Ray made it just past 22,000 feet of elevation, which marks camp two of four before reaching the mountain’s summit. According to Ray, climbing Everest was an amazing lesson about how hard it is to live without enough oxygen. While traveling home, he reflected on his journey by saying, “Although I can never fully understand what those with rare diseases like pulmonary arterial hypertension go through every day of, I felt what it is like to struggle for oxygen with each step. This experience has only increased my passion to create the next generation of medicines to help combat pulmonary and rare diseases.”

As for what is next, Ray says that he will try again next year with more knowledge and experience under his belt. He has no plans to give up on either of his goals to reach the top of Everest or to develop next generation medicines for those with rare diseases. In the words of Ray, “Stay tuned, the journey is not over.”

We would like to thank Ray for his commitment to raising awareness for rare diseases and look forward to seeing him take on the challenge next year.