Lincoln Financial Field in Philadelphia experienced a Rare Disease Community takeover Saturday night when Uplifting Athletes hosted its 2nd Young Investigator Draft presented by CSL Behring.
And the spotlight at The Linc – home to the NFL’s Philadelphia Eagles – was on the six rare disease research grant recipients drafted by our priority partners to become part of the Uplifting Athletes team.
“We could not of been more excited how the event came together, and what an amazing turnout we had for year two of this event,” Uplifting Athletes Executive Director Rob Long said. “We take pride in our ability to bring together doctors, patients, young investigative researchers, industry partners, rare disease advocates and athletes all together in one room. Each group was well represented.”
Similar to the NFL Draft where teams select the top young prospects they feel can make the most impact on their future, at the Young Investigator Draft, Uplifting Athletes celebrated its 2019 draft class in five different rare disease categories.
The evening started with a social hour that included one-of-a-kind stadium tours of Lincoln Financial Field.
Then it was time to kick off the 2019 Young Investigator Draft and hand out some authentic draft jerseys to research scientists in five rare disease categories: rare cancers, rare autoimmune and immunological disorders, rare blood disorders, rare genetic disorders and rare muscular and neurological disorders.
The 2019 Young Investigator Draft class includes Dr. Shana McCormack, Dr. Elizabeth Harrington, Dr. Alberto Japp, Dr. Eugene Hwang and Dr. Brian Sworder.
Several of the grant recipients said the process of being drafted was a “first” for them and despite being briefed and told how the evening would unfold they said there were no words that fully prepared them for the energy and excitement the evening created.
Young Investigator Draft grants are intended to inspire collaborative and translational research that will benefit the entire Rare Disease Community. The Young Investigator Draft stage provided each doctor a platform to educate and inspire by sharing their research along with its impact on the Rare Disease Community.
The drafted grant recipients were chosen by this year’s priority partners: Accelerate Brain Cancer Cure, Castleman Disease Collaborative Network, Friedreich’s Ataxia Research Alliance, Leukemia Lymphoma Society and Project ALS.
Each priority partner had a guest presenter make the selection. The 2019 list of guest presenters included Kyle Bryant, BethAnn Telford, Dr. David Fajgenbaum, Malik Turner and Adam Breneman.
After draft emcee Stephanie Stahl, a health reporter for media sponsor CBS 3 of Philadelphia, closed the draft it was time for a couple special presentations.
Dr. Brenda Gallie of Children’s Hospital in Toronto received the Uplifting Athletes Young Investigator Draft Collaborative Leadership Award for her decades of commitment to eradicating the rare eye disease retinoblastoma.
She was introduced via video by former USC long snapper and 2016 Uplifting Athletes Rare Disease Champion Award winner Jake Olson, who is legally blind after losing both is eyes to retinoblastoma.
To bring down the curtain on the evening, the 11th winner of the Uplifting Athletes Rare Disease Champion Award, University of Kansas football coach Joshua Eargle, took the stage and delivered a moving and inspirational speech.
Coach Eargle shared the story of his family and their rare disease journey with their daughter Landrey. For nearly six years the Eargle’s stayed quiet about their struggles with the extremely rare diagnosis for Landry.
After sharing their story publicly for the first time in 2019, doors and avenues have opened they never imagined. This has inspired Coach Eargle and his wife Kristen and made them even stronger advocates for the Rare Disease Community.
Uplifting Athletes would like to thank everyone who attended our 2nd Young Investigator Draft and a special thanks to all of our sponsors for making this unique approach to rare disease research possible.
In addition to CSL Behring as our presenting sponsor, Sanofi Genzyme, Horizon, PRA Health Sciences, Retrophin, Bristol-Myers Squibb, Spark Therapeutics, Strongbridge BioPharama, Amicus Therapeutics, We Work For Health (WWFH) and Ultragenyx all contributed to the success of the 2019 Young Investigator Draft.
“It took a lot of teammates who believe in the mission of Uplifting Athletes and have passion for the rare disease cause to make all this happen,” Long said. “The fact that our priority partners joined us in co-funding each grant recipient so that we could direct more than $120,000 directly to the young investigator rare disease researchers to be used at their discretion to support their research is a game changer.”