Friends in the Fight: Athlete’s Loss Inspires Support for Tay-Sachs Research via Uplifting Athletes’ Young Investigator Draft

In the hallowed halls of Colgate University, a young man named Greg Hadley found his calling in an unexpected place: the field of rare diseases.

Little did he know that his journey would evolve into a decade-long commitment, uniting organizations and researchers in a collective effort to combat the devastating impact of rare diseases.

Greg Hadley with his teammates supporting Uplifting Athletes. Greg has blonde hair and is wearing a maroon outfit that says Uplifting Athletes.
Photo courtesy of Greg Hadley and Uplifting Athletes

Sports and rare disease are more similar than people think. Both involve community, resilience, and strength. Scott Shirley saw this connection; driven to shine a light on the challenges faced by rare disease families like his own, Shirley launched Uplifting Athletes in 2007 at Penn State University.

Uplifting Athletes is a nonprofit organization with a mission to harness the power of sport to build a community that invests in the lives of people affected by rare diseases. The organization empowers athletes to use their platform for a greater purpose.

Hadley, a linebacker on the Colgate team, embraced this mission wholeheartedly. As a student-athlete, he recognized the potential of sports to transcend competition and make a lasting impact. Hadley founded and ran the Colgate chapter of Uplifting Athletes—one of the first college chapters—and did a phenomenal job growing and supporting the community throughout his time at school.

Greg Hadley, who launched the Uplifting Athletes chapter at Colgate
Photo courtesy of Greg Hadley and Uplifting Athletes

2010: Hadley graduated, handing over the reins of the Colgate chapter and jumping into his career. He was grateful for the connections and knowledge that Uplifting Athletes brought him, and eager to dive into his next chapter.

Ten years later, life had other plans. Hadley’s close friends’ daughter was diagnosed with Tay-Sachs disease, a rare, devastating, and fatal neurodegenerative disorder. Fueled by the determination to make a difference, Greg leveraged his connections with Uplifting Athletes, resulting in a meaningful relationship that will soon play out on stage at the Young Investigator Draft, taking place on February 3, 2024.

The Shock of Tay-Sachs

Hadley’s wedding day was beautiful. He celebrated amongst friends and family, including Myra Sack, who stood as his wife’s Maid of Honor, and her husband Matthew Goldstein. It was an atmosphere of love, support, and genuine happiness.

Greg Hadley and his friend stand with their daughters. His friend's daughter passed away from Tay-Sachs disease.
Photo courtesy of Greg Hadley and Uplifting Athletes

When Sack and Goldstein’s daughter Havi Lev was diagnosed with Tay-Sachs disease, it felt like tragedy struck close to home. After all, Hadley considers these people to be practically family.

Infantile Tay-Sachs disease is the most common form of Tay-Sachs. Symptoms often appear before or around six months old, with the disease becoming fatal by age five. There are no cures, nor approved treatments. Unfortunately, Havi Lev passed away on January 20, 2021.

Turning back to the skills and connections he made during his collegiate experience, Hadley set out with a question: what can we do to fund research and make a difference? He reached out to Uplifting Athletes and to the National Tay-Sachs & Allied Diseases Association (NTSAD), setting up phone calls and conversations. NTSAD currently leads global efforts to find treatments and an eventual cure for Tay-Sachs and related conditions by driving research, facilitating collaboration, and nurturing community.

This connection marked the beginning of a powerful alliance between Uplifting Athletes and NTSAD, bringing together athletes, advocates, and researchers towards a common cause. The collective effort of both organizations extends far beyond the confines of athletic fields or medical settings, reaching communities across the nation.

Young Investigator Draft 2024

One of the most significant milestones emerging from this relationship is the impact on the 2024 Young Investigator Draft. During the Young Investigator Draft, Uplifting Athletes grants researchers with funds for collaborative basic bench research to positively impact treatments and potential cures for the rare disease community. This event celebrates the spirit of discovery while providing a lifeline to researchers dedicated to unraveling the mysteries of rare diseases.

At this year’s draft, Uplifting Athletes is awarding a $20,000 grant to Dr. Toloo Taghian, PhD, of the UMass Chan Medical School. Dr. Taghian, whose research focus is to develop and translate gene therapies for rare neurological disorders, was nominated for the Draft by NTSAD. This grant represents a beacon of hope for families affected by Tay-Sachs and underscores the importance of supporting transformative and innovative research. Even more excitingly, Hadley will present the grant to Dr. Taghian.

When Hadley thinks of Havi Lev, he still feels incredibly sad about the loss that her family must grapple with. But he holds her at the heart of his pursuits in rare disease and hopes that this grant will honor her memory.

Reflecting on the ongoing efforts of Hadley, Uplifting Athletes, and NTSAD highlights the profound ripple effect that even one person’s commitment can create. In the spirit of the Young Investigator Draft we are reminded that each act of kindness, partnership forged, and dollar raised brings us closer to a future where rare diseases no longer have such a challenging impact on families.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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