Rare Community Profiles

Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

Uplifting Athletes Harnesses the Power of Sport to Benefit the Rare Disease Community

In 2002, Scott Shirley, a football player at Penn State University, learned that his father Don had been diagnosed with a rare disease. His team rallied behind him, with teammate Damon Jones suggesting that they shine a spotlight on rare disease. As Uplifting Athletes explains:

The Penn State football team rallied around the idea of leveraging a summer strength and conditioning competition into a fundraising event called Lift For Life by opening it up to their fans and the media. They soon realized that the benefits of this new organization were far greater than they had imagined.

In 2003, the first Lift for Life was held and backed by the Penn State student-athlete advisory council who distributed funds raised to rare disease research. Following the success of this first event, Uplifting Athletes was founded in 2004 as a 501(c)(3) designated organization with a mission to harness the power of sport to build a community that invests in the lives of those impacted by rare disease. Since its founding, Uplifting Athletes has worked alongside a national network of student-led chapters and partnered with professional athletes to raise money for research, awareness, and unique experiences for rare families. Says Brett Brackett (General Manager and Director of Sport Engagement, Uplifting Athletes):

“At first glance, most people think that sports and rare diseases don’t have much in common. However, we know that in both spaces, one of the most critical values organizations can commit to is teamwork. Uplifting Athletes works across stakeholder categories to aid healthcare providers and researchers, patient advocacy groups, and at the individual level with patients and their families to instill hope so that one day, those facing a rare diagnosis will not have to hear that there is no current treatment or resource available for them.”

The Impact of “Lift for Life”

Lift for Life has also grown over the years. This flagship event now takes place annually throughout spring and summer semesters at Uplifting Athletes’ chapter schools across the country. Each chapter chooses a specific day for a team workout and channels it into a day of impact. Fans can then pledge to donate for each rep completed; for example, Elon’s Women’s Soccer Team earned nearly $1,500 in their first year as a chapter after fans pledged for each completed 65lb back squat repetition. Teams may complete a variety of reps, such as bench presses or yards averaged during a medicine ball throw. Since 2018, Life for Life has brought together 32 men’s and women’s teams to raise over $570,000 to invest back into the rare disease community. Alina Smith (Women’s Volleyball, Lehigh University) says:

“The most rewarding part of participating in Lift for Life is knowing that I can hopefully one day help someone who is fighting a rare disease. While completing the lift, it honestly feels like fuel and motivation to push myself and give it my all. Lift for Life is impactful and rewarding to see what a small amount of change can do for a whole community.”

Abbie Brown (Field Hockey, Lehigh University) agrees:

“It is so exciting to come together as a team to raise awareness and support those with rare diseases. I take part in Lift for Life to be a part of something bigger than myself. It’s crucial that we use the voice and platform we are given through athletics to support others.”

The Davidson Chapter joined Uplifting Athletes in 2017. Co-founded by former Wildcats George Hatalowich and Kevin Stipe, the duo was inspired by their own individual connections to the rare disease cause and made supporting the rare disease community for the Davidson football program a priority. Davidson’s Football Chapter Leaders organized a team workout on Friday, April 21 dedicated to raising funds and research for the rare disease community. The team participated in a 225 lb. bench press workout where they pushed to complete as many reps as possible. The team raised almost $10,000 to support Uplifting Athletes’ mission. Says Storm Monroe (Linebacker, Davidson Football):

“As an athlete who was formerly diagnosed with a rare disease, I know the importance of bringing both attention and resources to rare disease research. Through our Lift for Life, I am excited to aid the research that will benefit those facing their own battles with rare disease!”

Celebrating an Important Anniversary

This is also a special and exciting year for the Penn State football chapter. Why, you might ask? 2023 signifies the 20th anniversary of Penn State’s participation in Lift for Life! There are 11 different position groups from Penn State Football, which represents a huge amount of love and support for the rare disease community.

This event will be held on Thursday, June 22 and will be open to the public. If you would like to pledge, you may do so here. Funds raised through Penn State’s event, as with all Lift for Life events, is used to invest in rare disease research, awareness, building next-generation leaders, and creating unique experiences and events like Uplifting Experiences for the rare community. Each Uplifting Experiences event provides an opportunity for connection and care between those affected by rare disease and the athletes they support.

Additional Resources and Support

Uplifting Athletes places an emphasis not only in planting seeds of change for the future, but supporting those with resources and joy in the present. Outside of Lift for Life and Uplifting Experiences, Uplifting Athletes has a multitude of resources, events, and opportunities for people within and involved with the rare disease community. Applications are now live for the Researcher Travel Program, which will assist with travel expenses for professional students with an interest in rare diseases, as well as researchers who are exploring rare diseases.

Uplifting Athletes also works with athletes like Minnesota Twins’ Michael A. Taylor to make a change. For his first season with the Twins, Taylor is supporting the rare disease community with each home run he hits. Fans can pledge money and Taylor will match up to $75,000. Learn more.

Looking to learn more about Uplifting Athletes, its mission, or the many initiatives that you can get involved in? Head to Uplifting Athletes.