Rare Disease Research

2019 Young Investigator Draft recap
2018 Young Investigator Draft recipients
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.

 

 

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 »