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Our Lives: Our Stories

December 16, 2015 @ 1:00 pm - 2:00 pm EST

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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.



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.




*  Please note that we have just launched our new website. If you are receiving any error messages, please contact us at info[at]wearesrna.org. Thank you for your patience.



Medical professionals are not the only experts in rare neuroimmune disorders. Following a diagnosis of TM, NMOSD, and ADEM, individuals, families, and caregivers become experts, advocate for their own health and well-being, share their stories, and shape their futures. Join Niki Tracy and Danny Stotler as they share their daughter’s story and learn about GG’s TM journey that began in her senior year of college.

Email us at [email protected] with your questions for our community experts on this topic using “Podcast” in the subject line.

During the podcast, you can interact with the speakers and the moderator through our SRNA Facebook page, or using the GoToWebinar “raise your hand” feature for asking questions.



About Our Guest Speakers



RebeccaRebecca 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.

 




GGGabrielle (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_NikiDanny 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.


Details

Date:
December 16, 2015
Time:
1:00 pm - 2:00 pm EST
Event Category:

Venue

SRNA
United States

Details

Date:
December 16, 2015
Time:
1:00 pm - 2:00 pm EST
Event Category:

Venue

SRNA
United States