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At the beginning of The Guthy-Jackson Charitable Foundation’s 2012 NMO Patient Day, the conference room was abuzz with excitement, hope, wonder and even some trepidation. Since NMO is classified as a rare disease, many new attendees had never even met another person with NMO and they didn’t know what to expect or how they would feel. What they also didn’t know was that NMO was about to step into a new light like never before.
As audience members found their seats in the ballroom the lights dimmed. A large projection screen powered on. A black screen faded to light. The picture that came into focus was of talk show host Ellen DeGeneres
holding a hardback book. The title of the book was “Saving Each Other”
written by Victoria Jackson
and Ali Guthy
about living with neuromyelitis optica
(NMO). Then Ellen introduced Victoria and Ali to the world as mother and daughter discussed their experience living with NMO. Patient Day audience members sat in silence as they watched the daytime television show cast a national spotlight on the disease with which they have lived for so long – a disease which until now, was in the shadows. Click here to watch The Ellen Show video.
faded out and an emotional applause erupted. But it was more than just applause. It was an audible symbol of acknowledgement that the NMO community is finally getting the attention it so desperately needs. It was the type of awareness Patient Day attendees always hoped NMO would receive which was long overdue since NMO has received marginal attention in the medical world and even less in the mainstream media.
The ballroom lights came back on and GJCF Founder Victoria Jackson and Ali Guthy took the stage welcoming a record number of attendees to the foundation’s fourth annual event. Approximately 300 people attended NMO Patient Day with another 100 viewers participating in the live webcast
streamed across the world. Audience members consisted of NMO patients and advocates, clinicians, scientists and researchers, pharmaceutical reps, caregivers, family and friends. Click here to view the webcast.
For many participants, attending NMO Patient Day is becoming a pilgrimage of sorts. People come from across the world attending to learn about the latest scientific and clinical advances in NMO, meet others with NMO, reunite with friends, or even attend in memory of love ones lost to NMO. For everyone, NMO Patient Day is a therapeutic like no other that offers comfort, support and knowledge, while instilling hope for the future.
As the foundation transitions to Phase III
, a new collaboration was announced that will exponentially expand GJCF’s NMO Biorepository
across the U.S. Working with Laboratory Corporation of America® Holdings
(LabCorp), the foundation’s biorepository donation sites will increase to nearly 1,700. Qualified donors will be able to walk into any LabCorp office in the U.S. and donate to the NMO Biorepository. All blood samples will then be available to qualified scientists for NMO research projects. The official launch is estimated to occur in 2013.
NMO Patient Day also debuted a new inspirational video
(created by Wondros
) titled “How Can We See in the Dark?”
about NMO and its progress, and is narrated by Christine Ha
a.k.a. “The Blind Cook”
who won Master Chef Season Three
The morning’s events included four panel sessions of questions-and-answers. These scientific and clinical sessions allowed audience members, both present and virtual, to ask nearly 20 clinicians/scientists questions about NMO research and clinical scenarios. For over two hours, detailed answers were given by each clinician and scientist addressing NMO symptoms, reactions, conditions, treatments and much more. Questions from webcast viewers were also read to panelists.
After lunch attendees broke out into individual breakout sessions. Topics discussed were:
• Simplifying the Science of NMO
• Managing Stress and Fatigue of NMO
• Nutrition and Diet
• Meditation and Yoga
• Patients’ Rights
• NMO Advocacy Actions
View the full agenda here (PDF).
The end of NMO Patient Day invited NMO Advocates to share the different types of advocacy campaigns they have conducted to raise NMO awareness. Participants stood up in the crowd reporting actions like running races while raising donations for NMO, creating public service announcements (PSA), walking in parades, pie throwing contests, and many more. The events reported were unique and inspirational.
Overall, NMO Patient Day is just that – an inspirational day that offers more insight into NMO on many levels: clinical, scientific, advocacy and personal. For those new to the event, making new friends and connections is something they never thought would occur, but can’t imagine being without. After the day ended and attendees returned to their homes the friendships evolve into the growing support system – a critical component to solving this rare disease.
NMO Patient Day was hosted at the LAX Hilton Hotel
in Los Angeles, CA, on Oct. 24, 2012.