Our Lives: Our Stories
December 16, 2015
2015 ASK THE EXPERT PODCAST SERIES SPONSORED BY
Chugai Pharmaceutical Co, Ltd is conducting clinical studies to create original and innovative drugs, both in the USA and overseas, to address unmet medical needs in neurological disorders, where the level of pharmaceutical contribution and satisfaction concerning patient treatment remains low.
* The Executive Committee of SRNA with the medical and scientific council determines the content and topics of the podcasts. Sponsors are not able to influence the education program.
Alexion is a global biopharmaceutical company focused on serving patients with severe and rare disorders through the innovation, development and commercialization of life-transforming therapeutic products. Their goal to deliver medical breakthroughs where none currently exist is driven by the knowledge that people’s lives depend on their work.
* The Executive Committee of SRNA with the medical and scientific council determines the content and topics of the podcasts. Sponsors are not able to influence the education program.
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About Our Guest Speakers
Rebecca Whitney is a mom of three, the youngest of whom was diagnosed with transverse myelitis at four months of age. She is committed to learning, educating, and advocating about rare neuroimmune disorders, particularly in the pediatric population. As the Pediatric Programs Manager for SRNA, she works with patients, families, medical personnel and the executive team to further research, networking, and support of our children.
Gabrielle (GG) deFiebre was diagnosed with transverse myelitis in December of 2009. While she has made some progress, she remains a C7 quadriplegic and uses a wheelchair. As a Research Associate for SRNA, GG implements research studies about rare neuroimmune disorders and summarizes new research for our community. GG is also currently pursuing a Doctor of Public Health degree at the CUNY Graduate Center in New York City.
Danny Stotler and Niki Tracey live in Salida, Colorado and are parents to two girls, ages 3 and 5. Their youngest daughter, Rilynn, was diagnosed with transverse myelitis at 9 months old. The diagnosis quickly changed their role from parent to advocate in fighting for the best care for their daughter. Rilynn continues to improve daily going from paralysis at the C2 level to walking with only the aid of forearm crutches today. Danny is Partner at the Stotler and Young CPA Firm in Salida and Niki is the Vice President of? Mortgage Loans at High Country Bank, also in Salida.
