Having a rare disease can be challenging and isolating. It’s often difficult to describe the experience to someone who hasn’t gone through it. Mobilizing funds for support, resources, and research is difficult. In many times, the burden of care falls onto the community.

This is why the Uplifting Athletes Young Investigator Draft, which took place this year on February 3, 2024, is so important. This extraordinary event wasn’t a clash of titans on the football field, but rather a celebration of a different kind of victory – the uniting of a broad scientific and athletic community to make a change for people living with rare diseases.

Inspired by the NFL Draft, the Young Investigator Draft flips the script, shifting the spotlight from athletic prowess to scientific innovation. During the Draft, Uplifting Athletes provides ten researchers with $20,000 grants to fund collaborative basic bench research, transforming the treatment landscape for the rare disease community. The Draft highlights Uplifting Athletes’ continued commitment to cultivating resources to accelerate scientific advancements in rare disease while also contributing to the next generation of researchers.

In a historic moment, Uplifting Athletes crossed the $1,000,000 threshold of total grants awarded through the Young Investigator Draft program. This milestone is a testament to the unwavering dedication of Uplifting Athletes to fueling progress in rare disease research.

I was privileged to attend the Draft, an evening that showcased the brightest minds and boldest dreams in the field of rare disease research. The event began with an opportunity to tour Lincoln Financial Field, to share food and drinks with friends both new and old, and to learn about the many organizations supporting rare disease research.

As I stepped out of the Philadelphia Eagles locker room and made my way out to the field, a profound sense of happiness and peace flooded through me. I was surrounded by cheering, by conversation, and – most importantly – by others who understood the deep importance of the draft and its mission. These encounters with researchers, athletes, and members of the community such as Alex Gaudlap of the Raging Raymond Foundation and Marianne Clancy and Cassi Friday of Cure HHT, were profoundly invigorating, poignant reminders of the impact of collective advocacy and support.

The Pick is in: How the Uplifting Athletes YID24

At 7pm sharp, the draft commenced. Anticipation hung thick in the air. Joe Spivak, an American professional wrestler and titan in his own right, hosted the draft, exuding an electric energy.

The Draft recipients, whom you can learn more about here, included:

• Anthony Anzell, PhD: From the University of Pittsburgh, Dr. Anzell was nominated by Cure HHT. His category of research is rare genetic disorders.
• Eleonora D’Ambrosio, MD: Hailing from Nationwide Children’s Hospital, Dr. Ambrosio was nominated by Cure VCP Disease in the category of rare muscular and neurological diseases.
• Marta Garcia-Forn, PhD: Dr. Garcia-Forn works with the Icahn School of Medicine at Mount Sinai. Nominated by the DDX3X Foundation, her research focus is rare genetic disorders.
• Noah Guiberson, PhD: Dr. Guiberson works with Weill Cornell Medicine. He was nominated by the STXBP1 Foundation, and his research will center around rare muscular and neurological diseases, as well as rare genetic disorders.
• Julian Halmai, PhD: Dr. Halmai works with the University of California, Davis. He was nominated by the Foundation for ARID1B Research and his research category is rare muscular and neurological diseases, as well as rare genetic disorders.
• Daniel Kennedy II, PhD: From the Baylor College of Medicine comes Dr. Kennedy, nominated by the TBRS Community. His research categories include rare autoimmune diseases, rare genetic disorders, and rare blood diseases.
• Dorottya Laczko, MD, PhD: Dr. Laczko, nominated by the Castleman Disease Collaborative Network, works with the University of Pennsylvania. Her research categories include rare genetic disorders and rare autoimmune diseases.
• Anusha Sivakumar, PhD: Dr. Sivakumar of the University of California, San Diego, aims to advance research into rare muscular and neurological diseases, as well as rare genetic disorders. She was nominated by the Friedreich’s Ataxia Research Alliance.
• Toloo Taghian, PhD: Nominated by the National Tay-Sachs & Allied Diseases Association, Dr. Taghian plans to pursue research into rare genetic disorders through her work at UMass Chan Medical School.
• Andrea Wilderman, PhD: Dr. Wilderman was nominated by the TANGO2 Research Foundation. Her work at Baylor College of Medicine will more deeply explore rare genetic disorders and rare muscular and/or neurological diseases.

I was truly inspired by these researchers and their dedication to making a difference. Their multidimensional approaches underscore the complexities of rare diseases and the urgent need for innovative solutions. Hearing from the student-athletes at Uplifting Athletes’ chapters about how this work further inspires and motivates them only makes me more excited for the future. These research grants are invaluable, and the opportunity to educate and raise awareness around rare disease trickles down and catalyzes even more change.

As I reflect on my experience, I’m filled with hope and gratitude. Together, we stand on the brink of a new era in rare disease research – one defined not by the challenges we face, but by the boundless possibilities that lie ahead.

About Uplifting Athletes

Uplifting Athletes—a Patient Worthy partner—is a 501(c)(3) nonprofit organization that harnesses the power of sport to build a community that invests in the lives of people impacted by rare diseases. The organization was founded in 2007 by Penn State University football player Scott Shirley, who sought to shine a light on the challenges faced by families with rare diseases like his own. Uplifting Athletes is a unified collective of next-generation talent including patients and their caregivers, allies, healthcare providers, researchers at all stages of their careers, and families who are experiencing bereavement or still in search of a diagnosis. Uplifting Athletes is planting seeds of hope for the future through initiatives that reinforce foundational research and educating emerging professionals from underrepresented backgrounds while serving those who need resources now with one-of-a-kind events.