Inspirational athletes tackle funding for rare disease research and awareness


At first glance, football and science seem like disparate fields of play, but the nonprofit Uplifting Athletes finds common ground by leveraging the popularity of college games to fund rare disease research. .

Its nearly two dozen chapters – representing college football teams across the country – organize fundraisers to help young researchers find cures for the nearly 7,000 known rare diseases.

Rob Long, Executive Director of Uplifting Athletes, attends Global Genes 8th Annual RARE Champions of Hope Celebration at Sheraton San Diego and Marina on September 20, 2019 (Photo by Mike McGinnis / Getty Images)

“We can really generate real awareness for the rare disease community through the athletics platform,” said Robert Long, executive director of Uplifting Athletes, in a video interview.

“We have so many people who support us purely on the basis of the sporting aspect of what we do and this gives us the opportunity to educate them on the needs of the rare disease community,” said Long, a former Syracuse bettor whose career was interrupted. short due to rare brain cancer.

Over the past three years, Uplifting Athletes has awarded $ 440,000 in grants to more than 20 scientists as part of its Young Researcher Draft, which is modeled after the NFL Draft for professional football teams in the United States. . This project selects investigators from the United States and Canada in the early stages of their research careers working on rare diseases.

A patient advocacy group appoints an eligible researcher, and the Scientific Advisory Board then rates each researcher against a rubric that focuses on the feasibility of the project and the applicant’s relevant education and training. The impact that research will have on the rare disease community is also a key objective. The prizes will be awarded to the best applicants, the number of which depends on the funding available.

Applications for 2o22 are now open; the deadline to apply is November 18th and the winners will be announced by the end of the year. The grant is for one year, with a minimum scholarship of $ 20,000, half of which is funded by Uplifting Athletes and the other half by the nominating group.

The 2021 “class project” included research focused on diseases such as Charcot-Marie-Tooth disease, blinding retinal disease, and DDX3X syndrome, a newly discovered neurodegenerative disease that commonly occurs in women and is associated with developmental delays and autism spectrum disorders.

Uplifting Athletes is also working to include researchers from diverse backgrounds as part of its Under-Represented Medical Researchers initiative, which began in 2020. Through this program, the Advisory Board is ensuring that at least a project of under-represented researchers is selected.

“What we are trying to accomplish is to create more diversity and equity in the research space and to provide researchers from under-represented backgrounds with opportunities to be celebrated among their peers through the project. research, ”Long said.

Garrett Hopkin, a boy with Niemann-Pick Types A and B, meets Buffalo Bills quarterback Josh Allen. (Photo courtesy of Uplifting Athletes)

Uplifting Athletes was launched in 2003 after the father of former Penn State football player Scott Shirley was diagnosed with kidney cancer, which is classified as a rare disease by the National Institutes of Health because it affects less than 200,000 people in the United States.

In order to raise funds for research into rare cancers, Shirley and her Penn State teammates opened up their summer strength training to the public; they called it Lift for Life and thus raised $ 13,000. The following year, they raised $ 38,000.

Uplifting Athlete’s main source of funding comes from its chapters, which host events on campus, such as Lift for Life, now the nonprofit organization’s longest-running program.

Until 2015, each university campus was responsible for working with a patient advocacy organization for a specific rare disease. The University of Washington football team, for example, had started their chapter to raise funds and raise awareness about pediatric multiple sclerosis because the father of one of the team’s offensive linemen had the adult form of the disease.

However, as the organization grew, it was difficult for Long and his small team of employees to stay on top of relationships with more than 20 nonprofits. He also found it difficult to stay on the message with a broad mission of serving all rare diseases.

Thus, the Uplifting Athlete chapters are now pooling their funds to support the organization as a whole and the scientists of the Young Investigator Project.

“It was a more efficient way to use funding and support where we could specifically name the researchers and research that we were funding, rather than just passing it on to different organizations and in different amounts,” Long said.

Uplifting Athletes is using the millions of eyes watching college football to their advantage by raising awareness in the under-represented rare disease community.

Players from participating universities wear badges on their uniforms during spring games. During the season, some will put Uplifting Athletes stickers on their helmets.

Awareness also spread when some of the players entered the NFL. A dozen players wear custom Uplifting Athletes cleats each year in December as part of the NFL’s My Cause My Cleats campaign, which allows players to support charity by wearing unique cleat designs.

The “Uplifting” part of the organization’s name also refers to college players, as the non-profit organization helps its student-athletes develop leadership skills after completing their amateur or professional careers.

For the past 13 years, Uplifting Athletes has hosted a Chapter Leadership Leadership Conference. According to Long, the goal is to help student-athletes first understand the goals and mission of the organization, and second, coach them in life and leadership skills to prepare them as they go. eventually hang up their headphones.

“As a Division 1 football player, you don’t have the option of working full time or doing an internship,” Long said. “We provide this by uplifting athletes and trying to help athletes become the best version of themselves as they can be.”

Each year for the past 12 years, the organization has honored a rare disease champion – any leader in college football who has helped the rare disease community.

Before COVID-19, part of the Uplifting Athletes’ mission was to connect rare disease families with the football players they root for. Every summer before the pandemic, the entire Notre Dame college football team met rare disease patients for an evening of bowling. Last July, Garrett Hopkin, a boy with Niemann-Pick disease types A and B, met Josh Allen, quarterback for the Buffalo Bills pro football team.

Long himself was touched by Uplifting Athletes in 2012 after the players started a chapter at Syracuse University, New York, focused on brain cancer research in his honor.

At the end of his final year as a gambler in December 2010, doctors discovered a large tumor in his brain that would require immediate surgery. She was subsequently diagnosed with grade 3 anaplastic astrocytoma, a rare type of brain cancer.

Even though Long would eventually recover, after a long and difficult treatment cycle, his hopes of playing in the NFL were dashed. Yet he has always had a successful college career in the punting, and in 2016 he became Director of Rare Disease Engagement at Uplifting Athletes, and ultimately Executive Director of the organization.

“I wanted to take what I’ve been through and what I’ve been through and use it as a way to pay it forward,” Long said. “That’s when I got involved with Uplifting Athletes.”

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