People with the rare genetic disorder, Alpha 1 Antitrypsin Deficiency or Alpha 1, don’t produce the proteins necessary to protect their lungs from damage due to inflammation. The condition can weaken lungs and put them at higher risk of early-onset emphysema, as well as liver disease.
There are treatments, but no cure.
That’s why a team of eight CSL Behring employees recently suited up for a long-distance bike ride alongside the shores of Cape Cod, Massachusetts. Nearly 50 other CSL riders participated in “Riding for a Reason” virtually, logging miles closer to home. CSL Behring, a global biotech, develops and manufactures medicines for patients who have rare and serious diseases, including Alpha 1.
“We’re supporting those with the disease, riding for those who can’t but would like to and most importantly, raising awareness about the disease and working to improve patient lives through research,” said Patient Engagement Associate Linda Cornwell, who traveled to Cape Cod for the event.
The event raises funds for the Alpha-1 Foundation. Cyclists could choose to go 50 or 100 miles in a single day – known as a half-century and a century. Each are milestones in the career of a recreational cyclist, so the ride offered a chance for cyclists to complete one of their biggest rides of the year in honor of Alpha 1 patients, Cornwell said.
Other cyclists included Melissa Zyla, Associate Director of HR Technology, and Ellyn Getz, Director of R&D Patient Partnerships.
“It required lots of cross-training: running, rowing and boxing, in addition to time in the saddle,” Getz said. “Gearing up for this ride has been a lot of fun and has kept me motivated.”
Training to go the distance was certainly worth the effort, Getz said. She enjoyed riding through coastal New England with CSL colleagues from across the United States – and for a good cause.
“I wore an Alpha Angel badge to honor Wilson Smith, who was a beloved member of the Alpha 1 community,” she said. “There was so much love and support for one another. I loved hearing stories about why people were riding – whether it was on behalf of a family member or for a friend.”
Zyla appreciated the opportunity to meet patients in person.
“I had the pleasure to meet a few Alpha 1 patients who thanked CSL for all we do to help them with their condition,” she said. “I am so glad I had the opportunity to be part of this event and speak to patients firsthand and hear how we have helped them live better lives.”