Training for a Cure: CF Researcher Raises Funds for EE

Emily’s Entourage (EE) is incredibly honored to have a group of scientists dedicated to accelerating research and drug development for nonsense mutations of Cystic Fibrosis (CF). In the next year, 90% of the CF population could see the benefits of a life-saving drug on the market (currently pending FDA review and approval), but those in the final 10%, including those with nonsense mutations, will not benefit from these new breakthrough drugs. 

And in fact, the commitment of the scientists run so deep that it is not merely limited to their “day job” at the lab advancing critical research. Rather, at times, it permeates many aspects of their lives. There is no better example of that than University of Rochester’s John Lueck, PhD, who has decided not only to do research to speed breakthroughs and a cure for the final 10%, but also to raise the funds that will drive the critical research.

Over the last few months, Dr. Lueck has trained to climb The Matterhorn in the Swiss Alps, a mountain he tackled on August 22 that reaches almost 15,000 feet high. As a two-time EE grantee through the Catalyst for a Cure Campaign, he flipped the script and committed to raise funds for EE throughout the entire training process!

In 2017, while at the University of Iowa, Dr Lueck was a member of the team led by Chris Ahern, PhD that received an EE grant to further their research on engineering transfer-RNA molecules to correct nonsense mutations of CF. Based off of the results gained through EE’s initial funding, Dr. Lueck received a Vertex CF Research Innovation Award of $750,000 over three years to further his research on nonsense mutations of CF. He attended EE’s third scientific symposium, Therapeutic Development for Nonsense Mutations: The Final Frontier for CF, in September 2018 and most recently received an EE stimulus grant to purchase Ussing chambers, specialized equipment to measure the effectiveness of CF nonsense mutation suppressing ACE-tRNAs.

More recently, Dr. Lueck turned to his childhood love for the outdoors and mountaineering skills to attempt one of his biggest adventures yet. Not only has he been to all 50 states, but he has also traveled the world and has summited peaks over 14,000 feet in Mexico, Ecuador, and now Switzerland! 

You learn from what you’ve done and keep pushing forward. I have the mule gene, it makes me just keep going. 

When asked what contributes to his fondness for mountaineering, Dr. Lueck brought it back to what drives him as a researcher saying, “You learn from what you’ve done and keep pushing forward.” Having to overcome obstacles does not stop his perseverance for victory. “I have the mule gene,” he joked, “it makes me just keep going.”

Dr. Lueck acknowledges the crucial role EE has played in him becoming an independent researcher in the CF space. With every training session and every dollar raised, he interlaced the journey of the CF scientist with the journey to the top of The Matterhorn. Though he was not able to reach the highest peak due to dangerous weather conditions (grateful for his caution and safety!), his expedition alone has contributed $2,780 to more critical funding for life-saving breakthroughs! Dr. Lueck recognizes his part in the ultimate quest for fast breakthroughs of CF and deeply hopes that he also can be part of finding breakthroughs and a cure for the final 10% of the CF community. 

Emily’s Entourage is beyond grateful to Dr. Lueck for his impassioned commitment to expediting breakthrough for nonsense mutations of CF in more ways than one.