2010 Patient Day
The Guthy-Jackson Charitable Foundation 2010 NMO Patient Day
“You’ve given me hope and a home.” This was the clear message during the 2010 NMO Patient Day as people affected by neuromyelitis optica spectrum disease (NMO) came together for a day of personal, clinical and scientific sharing at the Beverly Hilton Hotel in Beverly Hills, CA, on Nov. 10.
Most patients have never met another person who has NMO. They live with their disease isolated from others like them, unable to relate their experience and frustration. NMO is a rare neuroimmunologic disease that affects approximately one in 100,000 people. In fact, NMO is so rare, many clinicians aren’t aware of it and thus are challenged to provide treatment or even answers for these patients – two facts that leave NMO patients feeling alone and without hope.
That is what The Guthy-Jackson Charitable Foundation’s NMO Patient Day gave NMO patients, family and friends: hope and a home.
During a colder-than-remembered November in Beverly Hills, the second annual NMO Patient Day warmed attendees’ spirits. Patients and Caregivers were once again reunited with each other and some of the best NMO scientists and clinicians in the world. Those who have never even seen another NMO patient were finally able to share their stories, make new friends and talk to the experts about their condition. Audience members were informed about the latest research in NMO science funded by the Foundation and leading clinical treatments used by NMO clinicians.
“The 2010 Patient Day was everything that I thought it would be and more,” said one attendee. “How wonderful it was to meet face to face with fellow patients whom I have communicated over the telephone and via email for the last five and a half years. Even more wonderful was to see all of those beautiful faces filled with hope.”
Patients, caregivers, friends and family came from all over the world to attend NMO Patient Day – a day that is fast becoming one of the most anticipated days of the year for some.
“I have returned [home] with many new and old friends for life and a great deal of enthusiasm, positivity and hope for my daughter’s future,” said another attendee. “It was a wonderful and life changing experience to meet so many others. Thank you Victoria.” Click here to read more comments about NMO Patient Day.
Those who could not attend in person, joined via live webcast. Approximately 130 online participants logged on to watch the NMO Patient Day. Viewers watched the day’s events from all over the world including, Canada, Israel, Norway, the U.S. and many other countries. Click here to watch the NMO Patient Day webcast.
The most anticipated session of the day was an open Q & A discussion about NMO. Attendees sought advice from clinicians and scientists as they asked questions about their conditions, treatments and the future of NMO. The panel was made up of eight NMO clinicians and scientists who represented the Mayo Clinic, the Univ. of Texas Southwestern, Univ. of Colorado Denver, UCLA and Northwestern University.
The day ended with a feeling of validation and solidarity. Over 300 people experienced Patient Day (in person and online), many of whom thanked Founder, Victoria Jackson for what she has done for the NMO community. Since its formation in mid-2008, the Foundation has worked to fund those select scientists who are on the cutting edge of NMO science applications.
Click here to learn more about the Foundation’s funded NMO science projects.
NMO Patient Day is part of the Foundation’s NMO Roundtable Conference.
Click here to read about the NMO Conference.