Emily Rhodes Lowry to receive rare muscular and neurological disorders research grant at Young Investigator Draft presented by CSL Behring


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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 disorders, rare blood disorders, rare genetic disorders and rare muscular and neurological disorders.

To learn more about the Young Investigator Draft and to purchase tickets click here

Researcher: Emily Rhodes Lowry

Category: Rare Muscular and Neurological Disorders

Education: 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, Rhodes Lowry has been working in the research laboratory of Hynek Wichterle, PhD at Columbia University.

Research: Lowry summarizes, “The focus of the work we do in the lab is to screen for drugs that can potentially treat ALS. To do this, we’ve developed a system where we can use stem cell technology to generate motor neurons, the cells that control muscle movement and get sick and die in ALS, from actual human patient tissue. We then add thousands of drugs at a time to those motor neurons to look for the compounds that prevent the neurons from dying. Once we have a promising set of drug candidates, we work with chemists to modify the structures of the drugs to make them more stable and more likely to reach the spinal cord, where motor neurons live. To date, nobody really understands why motor neurons suddenly die in ALS after they’ve been totally fine for most of the patient’s life. The targets that our best drugs are acting on can tell us more about what gets turned on and what gets turned off in a motor neuron when it decides to die.”

In Their Words: “Neuroscience was the perfect combination of biology, chemistry, physics, and, because so little is known about the brain, creativity. The next summer I interned in a neuroscience lab at UCSF, and after that I knew I had found what I wanted to for the rest of my life!” – Emily Rhodes Lowry

Emily Rhodes Lowry is a San Francisco native who remembers with crystal-clear clarity when neuroscience became much more than just another science class.

Growing up in Northern California Emily had two passions, science and creative pursuits, but wasn’t sure how to blend these two interests into something she could envision as a potential career or future.

Emily qualified, through eighth-grade standardized testing, for summer classes at Johns Hopkins University. At the time, she wanted nothing to do with summer school and was looking forward to a summer of hanging and out spending time with friends.

Her parents insisted she go and, for no clear reason, Emily signed up for a neuroscience class without any real knowledge of the brain or what she was signing up for.

“I ended up totally loving it, so thanks mom and dad” said Lowry, who in her free time outside the lab has a strong passion for underserved youth – especially girls – and helping access hands-on science education. “This work is really exciting to me not only because we might be able to directly help ALS patients someday with optimized drugs, but also because figuring out how these drugs are working is teaching us new things about the disease.”

A love of science, a passion for creativity and a dose of compassion for people suffering has driven Emily to the lab looking for answers to very tough medical questions.

“When I started doing my own research, I focused on neurodegeneration,” Lowry said. “Because it’s a dual opportunity to find new ways to help patients and to figure out what’s going wrong in these diseases in the first place.”

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Dr. David Fajgenbaum to receive rare autoimmune and immunological disorder research grant at Young Investigator Draft presented by CSL Behring


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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 disorders, rare blood disorders, rare genetic disorders and rare muscular and neurological disorders.

To learn more about the Young Investigator Draft and to purchase tickets click here

Researcher: Dr. David C. Fajgenbaum

Category: Rare autoimmune and immunological disorders

Education: BS in human sciences from Georgetown University, MS in public health from Oxford University, MD from University of Pennsylvania Perelman School of Medicine and MBA in health care management from University of Pennsylvania.

Research: Dr. Fajgenbaum leads the Castleman Research Program at Penn as primary investigator of 18 translational research studies, including an international natural history study and the first-ever NIH R01 grant. His published research has changed the way idiopathic multicentric Castleman disease is researched and treated. He is also a patient himself, who is in his longest remission ever thanks to a precision treatment that he identified, which had never been used before for Castleman disease.

In Their Words: “I think at the end of the day, if you boil me down, I am somebody who gets something done. I spend a lot of time thinking about what I’m going to do, but I don’t spend a lot of time talking about what I’m going to do. I’m a doer and I want to get things done. There are people counting on me, patients need answers from me and I need to provide them. I need to stay on the horse and keep pushing.” – Dr. David Fajgenbaum

Video: Treating My Own Disease

During his third year of medical school in 2010, Fajgenbaum, who was studying to become an oncologist, became extremely ill battling his rare disorder, spent five months in the hospital and reached the point of having his last rites read.

If that wasn’t enough to inspire and motivate the brilliant doctor, four more near-fatal relapses gave Fajgenbaum all the motivation required to carve out his own unique Castleman disease research path.

Fajgenbaum, who along with his wife Caitlin are expecting their first child later this month, co-founded the Castleman Disease Collaborative Network in 2012, through which he has spearheaded the “Collaborative Network Approach” to research. His particular sub-type of Castleman disease, idiopathic multicentric, involves the immune system attacking and shutting down the body’s vital organs. It affects people of all ages and the sub-type iMCD has only a 50 percent five-year survival rate.

“What keeps me working hard is the realization that, after many years in and out of the hospital and nearly dying, if I want something to happen, and I want solutions and cures for Castleman disease, I can’t wait and hope somebody else finds the answers,” Fajgenbaum said. “If I want something done, I need to do it myself. That’s what keeping me pushing hard and going forward. If I don’t jump into action that hope for solutions and cures will not turn into reality.”

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Jordan Culbreath, former Princeton RB and Rare Disease Champion, to serve as Keynote Speaker for Young Investigator Draft presented by CSL Behring


 

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Uplifting Athletes is set to tie the theme of the NFL Draft and Rare Disease Research together on August 18 in Philadelphia.

The inaugural Young Investigator Draft presented by CSL Behring will take place at Lincoln Financial Field, home of the Super Bowl champion Philadelphia Eagles.

Former Princeton running back and 2011 Uplifting Athletes Rare Disease Champion winner Jordan Culbreath will serve as the Keynote Speaker.

Culbreath was living out his dream at Princeton in 2009. The native of Falls Church, Virginia was getting the Ivy League education he desired and the walk-on was having a real impact on the football field for the Tigers as a standout running back.

Prior to the 2009 season, Culbreath was experiencing severe headaches and fatigue. He chalked it up to football and the added pressure of being named a team captain so he kept his symptoms to himself. Luckily, he sprained his ankle in the second game that season against Lehigh and told the team doctors the other symptoms he was dealing with.

The medical staff immediately had his blood tested and it revealed Culbreath was battling the rare blood disorder aplastic anemia. Had he not sprained his ankle the second game of the year it could have been much worse. Culbreath’s blood count numbers were dangerously low and potentially fatal.

“I’m very lucky. I know that. Had I not sprained my ankle who knows what would have happened to me,” said Culbreath, who works on Wall Street in New York City for Merrill Lynch. “I don’t take anything for granted. Uplifting Athletes and the work they do is important to me and I’m honored to be asked to share my story at the Young Investigator Draft.”

Culbreath immediately started treatment and missed the remainder of the 2009 season. At first, his priority was to get healthy, nothing else. Once he was healthy enough to think about playing football again, Culbreath focused on a return to the field and was cleared to return after six months.

He came back in 2010 and played his final season for the Tigers, scoring the winning touchdown in overtime against Lafayette in only his second game back. His courage and ability to overcome served as an inspiration for not only his teammates but also the entire Rare Disease Community.

The Young Investigator Draft presented by CSL Behring 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.

CSL Behring is a global biotechnology leader focused on serving patients’ needs. Their scientists use the latest technologies to develop and deliver innovative therapies that are used to treat rare and serious conditions, including immunodeficiency and autoimmune diseases, hereditary and acquired bleeding disorders, chronic inflammatory demyelinating polyneuropathy, hereditary angioedema and Alpha-1 antitrypsin deficiency, as well as transplantation and critical care.

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Global biotechnology leader CSL Behring becomes title sponsor for inaugural Uplifting Athletes Young Investigator Draft


YID 18 TITLE SPONSOR GRAPHICUplifting Athletes is pleased to announce CSL Behring as the title sponsor for the 2018 Young Investigator Draft on August 18 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 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.

CSL Behring is a global biotechnology leader focused on serving patients’ needs. Their scientists use the latest technologies to develop and deliver innovative therapies that are used to treat rare and serious conditions, including immunodeficiency and autoimmune diseases, hereditary and acquired bleeding disorders, chronic inflammatory demyelinating polyneuropathy, hereditary angioedema and Alpha-1 antitrypsin deficiency, as well as transplantation and critical care.

“We are so fortunate to have the support of a company like CSL Behring for our inaugural event. Having such a big player in the rare disease space as our title sponsor is a tremendous honor,” Uplifting Athletes Director, Rare Disease Engagement Rob Long said. “The Young Investigator’s Draft will provide funding for inspirational, intelligent, and driven researchers in the rare disease space. The support of CSL Behring as our title sponsor shows their commitment to this as well.”

At the event, individual $10,000 grants will be given to five Young Investigators who pursue rare disease research in these five different areas: rare cancers, rare autoimmune and immunological disorders, rare blood disorders, rare genetic disorders and rare muscular and neurological disorders.

“CSL Behring is driven by its promise to develop lifesaving therapies for patients with rare and serious diseases,” said Jens Oltrogge, CSL Behring’s Head of Global Commercial Development Hematology. “We’re thrilled to sponsor this unique initiative that provides vital funding and inspiration to bright young researchers focused on rare diseases.

The 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 will provide a platform for these young scientists to educate and inspire the audience by sharing their research along with its impact on the Rare Disease Community.

Tickets are available through the Young Investigator Draft registration page. The event will include heavy hors d’oeuvres and beer and wine prior to the program for the evening.

The challenges faced by the rare disease community are bigger than any one individual, team or organization can tackle alone. At Uplifting Athletes we take pride in providing opportunity for college football student-athletes and NFL players to use the platform they are afforded to shine a spotlight on rare diseases and support the cause.

Founded in 2007, Uplifting Athletes has college football student-athlete led chapters nationwide in FBS and FCS programs including nearly half the schools in the Big Ten and ACC conferences.