Rare Disease Research

2019 Young Investigator Draft recap

2019 Young Investigator Draft recap

Lincoln Financial Field in Philadelphia experienced a Rare Disease Community takeover on March 9, 2019 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.

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.

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.

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.

 

 

2019 Young Investigator Draft recipients

2019 Young Investigator Draft recipients

Researcher: Dr. Brenda Gallie

Category: Collaborative Research Grant

About: Dr. Brenda Gallie, a native of Canada, is part of a team that is making a huge difference in the battle against the rare eye disorder retinoblastoma. She started her education at Queen’s University in Kingston, Ontario in the pre-med program and ultimately received her MD from Queen’s University, as well. She did her residency at the University of Toronto and her post-graduate research training at Memorial Sloan-Kettering Cancer Center where she began her research  on retinoblastoma. Currently, Dr. Gallie is President of the International Retinoblastoma Consortium, Director of the Retinoblastoma Program at the Hospital for Sick Children, a Pediatric Ocular Oncologist at Calgary Children’s Hospital, a Professor at the University of Toronto, and Adjunct Scientist and Lead of Health Informatics Research in the University Health Network TECHNA Institute. Learn More

Researcher: Dr. Elizabeth Harrington

Category: Rare Muscular and Neurological Disorders

About: Dr. Harrington attended the University of Redlands, where she spent four years as a student-athlete on the varsity women’s soccer team and graduated with a degree in Biology and Communicative Disorders. Interested in the field of medicine, she accepted an Intramural Research Training Award at the National Institutes of Health in Washington D.C., where she worked in a clinical genetics research laboratory focused on rare inborn errors of metabolism. Ellie received her master’s degree in Human Genetics and Genetic Counseling at Stanford University School of Medicine. Dr. Harrington is the genetic counselor at the Eleanor and Lou Gehrig ALS Center at Columbia University Medical Center in New York and works as a researcher and counselor. Learn More

Researcher: Dr. Eugene Hwang

Category: Rare Cancers

About: Dr. Hwang was drawn to the brain and the uphill climb for pediatric brain cancer patients inspires him to be part of a team looking for daring solutions in his roles as a clinician and researcher. He started his education with an undergraduate degree in cell and molecular biology from Rice University. He went to medical school at Duke University where he obtained his MD and became a huge fan of Duke Blue Devils basketball. Dr. Hwang did his residency in pediatrics at Brown University’s Hasbro Children’s Hospital, returned to Duke University for his fellowship in pediatric hematology-oncology. Dr. Hwang’s final post-graduate training was also at Duke University in pediatric neuro-oncology. He is currently a pediatric neuro-oncologist at the Children’s National Medical Center and cares for children with brain tumors. Learn More

Researcher: Dr. Alberto Japp

Category: Rare Autoimmune Disorders

About: Dr. Japp is a native of Brazil and has done research all around the world noting that each country has its own unique style and approach. He went to Universidade Federal do Rio de Janeiro (UFRJ) for his undergraduate work and obtained a Bachelor’s Degree in Pharmacy. He then moved to Berlin, Germany and received his Master’s degree in Molecular Medicine from Charite. Dr. Japp stayed in Berlin and attended Humboldt University of Berlin where he obtained his Doctor of Philosophy – PhD, Biology, Immunology. He is currently a Postdoctoral Fellow at the University of Pennsylvania as a postdoctoral researcher in immunology. Learn More

Researcher: Dr. Shana McCormack

Category: Rare Genetics Disorders

About: Dr. McCormack started her education at Harvard where she studied biochemistry and was part of an NCAA National Championship rowing team. In her research she is finding a lot of cross-pollination and is excited to be collaborating with so many fellow researchers who are looking for common ground to help people. She obtained her MD from Harvard Medical School and the Massachusetts Institute of Technology and did her internship and residency in pediatrics at Massachusetts General Hospital in Boston. Currently, Dr. McCormack is an attending physician and Scientific Director of the Neuroendocrine Center in the Division of Endocrinology and Diabetes at Children’s Hospital of Philadelphia (CHOP). She also serves as a member of the clinical research team for Mitochondrial Medicine at CHOP. Learn More

Researcher: Dr. Brian Sworder

Category: Rare Blood Disorders

About: Dr. Sworder is a California native who considers himself a huge Los Angeles Dodgers baseball fan and got married in early 2019. He received his undergraduate degree in biology from UCLA before receiving his MD/PhD in molecular medicine from the Boston School of Medicine. He was an HHMI-NIH Research Scholar for 22 months as the Howard Hughes Medical Center and was an Internal Medicine Resident at Icahn School of Medicine at Mount Sinai for two years. Dr. Sworder is currently a Hematology and Oncology Fellow at Stanford University School of Medicine and is drawn to helping people who are handed a difficult and often scary diagnosis. Learn More

2019 Young Investigator Draft grant recipients

 

2018 Young Investigator Draft recipients

2018 Young Investigator Draft recipients

 

Researcher: Dr. David C. Fajgenbaum

Category: Rare Autoimmune and Immunological Disorders

About: Dr. Fajgenbaum leads the Castleman Research Program at Penn as primary investigator of 18 translational research studies, including an international history study and the first-ever NIH R01 grant. His published research has changed the way idiopathic multicentric Castleman disease is researched and treated. Learn More

 

Researcher: Emily Rhodes Lowry

Category: Rare Muscular and Neurological Disorders

About: Rhodes Lowry received her BA from Barnard College in neuroscience and behavior then went to Rockefeller University for graduate school and earned her PhD in neurobiology and genetics. Since graduating from Rockefeller in 2012, she has been working in the research laboratory of Hynek Wichterle, PhD at Columbia University. The focus of the work she does is to screen for drugs that can potentially treat ALS. Learn More

 

Researcher: Dr. Alessia Stornetta

Category: Rare Blood Disorders

About: Dr. Stornetta grew up in Ticino, the Italian-speaking region of southern Switzerland. She received her bachelor and master degrees in food science and in 2016 obtained her PhD all from the Swiss Federal Institute of Technology (ETH) in Zurich. In 2017, Dr. Stornetta joined the research laboratory of Dr. Silvia Balbo as a postdoctoral associate at the University of Minnesota with her research focusing on studying exposures in the oral cavity of people with the rare blood disorder Fanconi Anemia. Learn More

 

Researcher: Dr. Angela Waanders

Category: Rare Cancers

About: Dr. Waanders, a native of South Korea, began her research in 2007 as a pediatric hematology oncology fellow with a research project using SNP-array technology to profile childhood brain tumors. Since that time she has been directly involved in the genomic discovery and molecular characterization of brain tumors. Learn More

 

Researcher: Dr. Aimee Layton

Category: Rare Genetic Disorders

About: Dr. Layton's research focuses on lung disease and how exercise can be used to improve patient outcomes and predict how a person with a lung disease will respond to certain interventions, such as a lung transplant. She also researched how the mechanics of breathing can be impacted by disease and how the environment (pollution for example) impacts how our lungs work. Learn More

 

2018 Young Investigator Draft grant recipients

 

News

Posted on Wednesday March 13, 2019
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 […] Continue Reading »
Posted on Thursday February 28, 2019
The Young Investigator Draft is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers. These Young Investigators will pursue rare disease research in one of five different areas: rare cancers, rare autoimmune and immunological […] Continue Reading »
Posted on Tuesday February 26, 2019
The Young Investigator Draft is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers. These Young Investigators will pursue rare disease research in one of five different areas: rare cancers, rare autoimmune and immunological […] Continue Reading »
Posted on Tuesday February 26, 2019
The Young Investigator Draft is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers. These Young Investigators will pursue rare disease research in one of five different areas: rare cancers, rare autoimmune and immunological […] Continue Reading »
Posted on Monday February 25, 2019
The Young Investigator Draft is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers. These Young Investigators will pursue rare disease research in one of five different areas: rare cancers, rare autoimmune and immunological […] Continue Reading »
Posted on Monday February 25, 2019
The Young Investigator Draft is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers. These Young Investigators will pursue rare disease research in one of five different areas: rare cancers, rare autoimmune and immunological […] Continue Reading »
Posted on Monday February 18, 2019
Uplifting Athletes will host its 2nd Annual Young Investigator Draft presented by CSL Behring on Saturday, March 9th at Lincoln Financial Field, home of the NFL’s Philadelphia Eagles. The Young Investigator Draft is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while […] Continue Reading »
Posted on Tuesday February 12, 2019
Uplifting Athletes is excited to host the 2nd Annual Young Investigator Draft on Saturday, March 9th at Lincoln Financial Field, home of the NFL’s Philadelphia Eagles. The Young Investigator Draft is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the […] Continue Reading »
Posted on Wednesday January 16, 2019
Brett Brackett moves into General Manager role to complete leadership team Uplifting Athletes is excited to officially announce the promotions of Rob Long to Executive Director and Brett Brackett to General Manager. The duo will comprise a new executive team formed in the final quarter of 2018. Uplifting Athletes former Executive Director Scott Shirley, who […] Continue Reading »
Posted on Thursday January 10, 2019
Uplifting Athletes is pleased to announce global biotechnology leader CSL Behring will return as the title sponsor in 2019 for the second annual Young Investigator Draft on March 9th at Lincoln Financial Field in Philadelphia. The Young Investigator Draft, tying the theme of the NFL Draft and Rare Disease Research together, is the result of […] Continue Reading »