CSL Behring Partners with Uplifting Athletes for Rare Disease Research and Honors Those Making an Impact

2022 Young Investigator Draft grant recipients w_ Rob Long (left)_Brett Brackett (right)
Images via Uplifting Athletes.

At the celebratory event, presented by global biotherapies leader CSL Behring, Uplifting Athletes awarded $180,000 in research grants to nine promising young investigative rare disease researchers and honored the six newest members of the organization’s Rare Disease Championship Team―an exemplary group of college football players who support Uplifting Athletes’ mission to inspire the Rare Disease Community with hope through the power of sport.

A dedicated group of collegiate and professional athletes, rare disease patients, patient advocacy organizations, and biotech and pharmaceutical professionals teamed up to celebrate some of the best and brightest young scientists making an impact on the Rare Disease Community when Uplifting Athletes hosted its fifth annual Young Investigator Draft on February 5, 2022, at Lincoln Financial Field in Philadelphia.

The Young Investigator Draft is inspired by the NFL Draft but shifts the focus from the selection of emerging talent on the football field to recognize the next generation of promising young medical researchers in the rare disease space.

It is one of several signature initiatives created by Uplifting Athletes to raise awareness and research funding for rare diseases, which affect one in every 10 individuals in the US.

“Uplifting Athletes is proud to support the nine brilliant young scientists comprising our 2022 Draft Class, and those who have come before them, in the search for new treatments—and potentially cures—for the millions of children and adults living with a rare disease,” said Rob Long, Executive Director, Uplifting Athletes. “During my own journey, I became keenly aware of the heroes going to battle for me―the rare disease researchers working tirelessly to save my life and the lives of others. We believe these all-star scientists deserve to be lauded with the same excitement afforded to college and professional athletes.”

Long played college football at Syracuse University and was slated to be the top punter in the 2010 NFL Draft Class before he was diagnosed with anaplastic astrocytoma—a rare and aggressive brain tumor. He is here today because of science and remains passionately committed to helping others with rare diseases.

Uplifting Athletes’ mission is fulfilled through the support of 26 collegiate chapters led by student-athletes, including 25 men’s football teams and one women’s soccer team, and more than 80 ambassadors from across America’s professional sports leagues, including representatives from the National Football League (NFL) and Major League Baseball (MLB). 

All leverage their own powerful platforms to give voice to the 30 million Americans diagnosed with rare diseases.

Grant submissions for the Young Investigator Draft are thoroughly evaluated by an expert panel of scientific advisors prior to that year’s Draft Class being selected. Each researcher selected is awarded a $20,000 unrestricted grant to support their vital work. This year marked the largest Draft Class in the five-year history of the event.

Over the past five years, the Young Investigator Draft has awarded more than $620,000 in grant funding to 34 rare disease researchers across North America. CSL Behring, the global leader in treating rare and serious diseases, has served as the presenting sponsor of the Draft since year one in 2018.

“CSL Behring is thrilled to have joined Uplifting Athletes once again in recognizing the imperative work of these young scientists, who like us, are dedicated to advancing rare disease research,” said Kevin Kovaleski, Vice President, Global Commercial Development, Transplant, CSL Behring. “We extend our heartfelt congratulations to this year’s exceptional grant recipients and applaud the efforts of the young athletes who use their own platforms to support this work. It’s a winning combination and we’re grateful to be a part of it.”

Meet the Grant Recipients Selected to the Uplifting Athletes 2022 Young Investigator Draft Class

Researcher: Wu Chen, PhD

Category of Research: Rare Muscular and Neurological Diseases, Rare Genetic Disorders

Institution: Baylor College of Medicine

Nominated by: STXBP1 Foundation

Researcher: Naomi Dirckx, PhD

Category of Research: Rare Muscular and Neurological Diseases, Rare Genetic Disorders

Institution: The John Hopkins University School of Medicine

Nominated by: TESS Research Foundation

Researcher: Karine Doiron, PhD

Category of Research: Rare Muscular and Neurological Diseases, Rare Cancers, Rare Genetic Disorders

Institution: CHU Sainte-Justine Research Center, Université de Montréal

Nominated by: TBRS Community

Researcher: Michael Gonzalez, PhD

Category of Research: Rare Autoimmune Diseases, Rare Blood Disorders, Rare Cancers

Institution: University of Pennsylvania

Nominated by: Castleman Disease Collaborative Network

Researcher: Gaurav Goyal, MD

Category of Research: Rare Blood Disorders

Institution: University of Alabama at Birmingham

Nominated by: ECD Global Alliance

Researcher: Sushant Kumar, PhD

Category of Research: Rare Autoimmune Diseases, Rare Blood Disorders

Institution: University of Pennsylvania

Nominated by: The Aplastic Anemia and MDS International Foundation

Researcher: Shu-Yi Liao, MD, MPH, ScD

Category of Research: Rare Autoimmune Diseases, Rare Genetic Disorders

Institution: National Jewish Health (Denver)

Nominated by: Foundation for Sarcoidosis Research

Researcher: Maurizio Risolino, PhD

Category of Research: Rare Blood Disorders, Rare Genetic Disorders

Institution: University of California, San Francisco

Nominated by: T.E.A.M. 4 Travis (Together Ending Asplenia Mortality)

Researcher: Ji Zha, PhD

Category of Research: Rare Cancers, Rare Blood Disorders, Rare Genetic Disorders

Institution: Children’s Hospital of Philadelphia

Nominated by: Team Telomere

Meet the Student-Athletes Selected to the

Uplifting Athletes 2022 Rare Disease Championship Team

The Uplifting Athletes Rare Disease Champion Team Presented by Sanofi Genzyme highlights leaders in college football who are making a positive and lasting impact on the Rare Disease Community. This marks the 14th year of this initiative, which is part of the National College Football Awards Association (NCFAA).

Mac Brown, University of Mississippi

Brown began raising money for ALS research in his youth via lemonade sales to honor a childhood friend’s father. His original goal was $500 and today he has raised $150,000.

Sam Fraley, Formerly Temple University; Entered Transfer Portal

Nearly four years ago, as a senior in high school, Fraley became paralyzed due to Guillain-Barre Syndrome, a rare disorder where the body’s immune system attacks its own nerves. He battled the disorder and, in the summer of 2020, walked on at Temple as a long snapper. 

Dillan Gibbons, Florida State University

Gibbons planned to attend the Draft with Timothy Donovan, a young man who has inspired Gibbons’ philanthropic efforts in the rare disease space. (Bad weather causing flight cancellations prevented Donovan from attending.) Gibbons has expanded his charitable endeavors into his own nonprofit organization Big Man Big Heart.

Tyler Lavine, Southern Methodist University

Lavine found out in college he had a rare heart condition called Wolff-Parkinson-White Syndrome which, left untreated, can be fatal. He underwent heart surgery and made a full recovery before walking on and earning a scholarship as a running back for SMU in 2020. 

Peter Snodgrass, Northwestern University

Through his Uplifting Athletes leadership role on campus, Snodgrass has gone above and beyond to create a deeper connection between student-athletes and those impacted by rare diseases, including offering seats to members of the Rare Disease Community at Wildcat games, and recruiting Northwestern’s NFL prospects to participate in campus fundraising events.

Zeke Zaragoza, Oklahoma State University

Zaragoza was diagnosed with a rare disorder of the nervous system that affects just one in 10 million people annually. Zaragoza’s doctors expected the disorder would take away most of his physical abilities. He was able to overcome being confined to a wheelchair to walk on at Oklahoma State. Today, he uses his sports platform to raise awareness of the rare disorder.

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