Uplifting Athletes and STXBP1 Foundation Fund $20,000 Grant to Dr. Alex Felix at University of Pennsylvania

Penn Medicine’s Dr. Felix is among 10 rare disease researchers to be awarded a grant at Uplifting Athletes’ Sixth Annual Young Investigator Draft presented by CSL Behring on Feb. 4 at Lincoln Financial Field

Philadelphia (January 10, 2023) — Uplifting Athletes, a nonprofit organization dedicated to serving the rare disease community, has announced that Dr. Alex Felix, a postdoctoral researcher at the Perelman School of Medicine at the University of Pennsylvania will receive a $20,000 research grant as a member of Uplifting Athletes’ 2023 Young Investigator Draft Class.

Uplifting Athletes is a nonprofit organization that connects student-athletes across the country as well as professional athlete ambassadors with their local rare disease community to raise awareness and funds, and bring inspiration and hope to those impacted by rare diseases, which is approximately one in 10 Americans.

Dr. Felix is among a group of 10 researchers who will each receive an unrestricted grant for medical research at Uplifting Athletes’ sixth annual Young Investigator Draft presented by CSL Behring on February 4, 2023 at Lincoln Financial Field in Philadelphia.

This grant is co-funded by the STXBP1 Foundation, a parent-led patient advocacy organization dedicated to finding a cure for STXBP1 Disorder while improving the lives of STXBP1 patients and families.

The annual event, inspired by the NFL draft, invests in research which could lead to potential rare disease treatments and cures. Just as the NFL Draft rallies around the hope and possibilities that the next generation of game-changing talent will bring a franchise, the Young Investigator Draft celebrates the early-career research investigators who are working toward a brighter future for those affected by rare diseases.

“The members of our 2023 Young Investigator Draft Class represent a group of early-career, diverse researchers who are tremendous assets to the rare disease community,” said Rob Long, executive director of Uplifting Athletes. “These individuals stand to make a profound impact on the 30 million Americans impacted by a rare disease. We are thrilled to celebrate these scientists with the same spirit and fanfare that elite athletes receive and the college and pro athletes who join us every year in this effort love sharing the stage with these deserving researchers who represent so much promise for the future,” Long added.

Including the grants to be presented at the 2023 Young Investigator Draft, Uplifting Athletes will have awarded more than $820,000 in grant funding to 44 rare disease researchers across North America since 2018. Grant submissions for the Young Investigator Draft are evaluated by an expert panel of scientific advisors prior to the selection of each year’s Draft Class. Every researcher is nominated by a patient advocacy organization (PAO) recognized by Uplifting Athletes as a priority partner, with grants equally co-funded by Uplifting Athletes and the nominating PAO. The PAO that nominated Dr. Felix is the STXBP1 Foundation.

Dr. Felix was born and raised in Spain and performed his doctoral studies at the University of Barcelona, where he developed therapeutic oligonucleotides — which are short strands of synthetic DNA or RNA — for gene silencing applications in cancer, which can also be used for gene correction approaches in rare genetic diseases. After receiving his PhD, Dr. Felix’s interest in working on RNA therapies for rare disorders brought him to the laboratory of Dr. Benjamin Prosser at the Perelman School of Medicine at the University of Pennsylvania. There, he is a member of the Epilepsy and NeuroDevelopmental Disorders (ENDD) team, which actively seeks to develop and translate novel therapeutic strategies for rare neurodevelopmental disorders, including STXBP1 and SYNGAP1 encephalopathies.

Affecting one in 30,000 children, STXBP1 Disorder is a rare disease tied to the STXBP1 protein, which is crucial for signaling between cells in the brain. Often first presenting in severe seizures as early as the first day of life, individuals may experience a spectrum of symptoms including developmental delays, cognitive impairment, movement disorders and autism. Epilepsy affects 85 percent of these patients and the vast majority remain nonverbal. Today, no precision therapies exist for STXBP1 Disorder.

“I believe the development of RNA therapies present exciting applications, which includes the treatment of rare diseases like STXBP1 encephalopathy,” Dr. Felix said. “This award bolsters, our work aiming to develop a novel therapeutic strategy for a patient community that urgently needs effective therapies.

CSL Behring is a vital partner to Uplifting Athletes, serving as the title sponsor for the Young Investigator Draft since its inception in 2018.

In addition to honoring the new Draft Class, the 2023 Young Investigator Draft will provide a forum to recognize the newest members of Uplifting Athletes’ Rare Disease Champion Team―an exemplary group of leaders in college athletics who have made a positive and lasting impact on people affected by rare diseases.

For more information or to purchase tickets for the Uplifting Athletes 2023 Young Investigator Draft presented by CSL Behring, please visit https://charity.pledgeit.org/YID2023.

About Uplifting Athletes

Uplifting Athletes is a nonprofit organization founded in 2007 that harnesses the power of sport to build a community that invests in the lives of people impacted by rare diseases. Since its inception, Uplifting Athletes has raised more than $7 million by engaging athletes in order to positively impact the rare disease community through driving action and funding research. To learn more about Uplifting Athletes visit www.upliftingathletes.org.

About STXBP1 Foundation

STXBP1 Foundation is dedicated to finding a cure for STXBP1 Disorder while improving the lives of our patients and families. Founded in 2017, STXBP1 Foundation is a parent-led advocacy organization. STXBP1 Disorder is a rare epileptic and neurodevelopmental disorder caused by changes in the STXBP1 gene. With an incidence of approximately 1 in 30,000 live births, STXBP1 Disorder is one of the most common genetic causes of epilepsy. For more information, contact info@stxbp1disorders.org and visit https://www.stxbp1disorders.org/.