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The Guthy-Jackson Charitable Foundation’s 2009 NMO Roundtable Conference and NMO Patient Session

“I’m not alone anymore, ” was echoed across the room by patients attending the Guthy-Jackson Charitable Foundation (GJCF) Patient Session dedicated to NMO patients and caregivers. For the first time in history, a session solely dedicated to people with Neuromyelitis Optica (NMO) Spectrum Disease was held in Los Angeles, CA, on Nov. 11, 2009.

Dedicated to taking “A Rare Approach to a Rare Disease” GJCF hosted the “Living with NMO” Patient Session as part of the Foundation’s second annual NMO Roundtable Conference. Leading NMO scientists and clinicians from all over the world convened to further NMO research collaboration at The Tower Beverly Hills on Nov. 9 – 11, 2009.

The day-long NMO Patient Session offered patients and caregivers a rare chance to meet and talk with others who live with NMO. During a highly-anticipated Panel Discussion, where nine panelists responded to questions from members of the audience, everyone had an opportunity to ask questions and receive informed responses. Panelists included the Founder of GJCF, Victoria Jackson, as well as leading NMO clinicians, alternative medicine practitioners, and researchers from the Mayo Clinic, the University California at San Francisco, the Colorado Neurological Institute and others.

As the daytime sun faded into evening, members of the audience asked questions one-by-one regarding their personal NMO experiences. Questions from a mixed audience of nearly 130 people were addressed as panel members provided extensive answers, giving NMO patients what they have sorely lacked: personal attention and time with NMO experts.

“The Guthy-Jackson Foundation sponsored NMO conference was outstanding,” said NMO clinician and panelist, Dr. Benjamin Greenberg who works at the University of Texas Southwestern Medical Center in Dallas, TX. “Beyond the exciting science was the quite motivating patient question/answer session. Seeing the many varied faces and hearing the many stories of NMO were inspiring. So many people have been facing this disease with courage and now they have a forum in which to work together. It’s outstanding,” Greenberg said.

Over 50 people affected by NMO including caretakers, family and friends attended the Patient Session. Many traveled across the United States to reach Los Angeles to participate in the session, during which they found vindication and a sense of recognition as their voices were heard.

“Meeting all the patients, doctors and caregivers was the best part,” said Jesus Loreto who traveled from Florida to attend with his wife Maria. “The day we got to be in the same room with the doctors, specialists, patients, caregivers and all, I shed tears, but tears of hope, faith and mostly tears for being proud of all of them. They are all my heroes.”

Contributing to this scientific progress during the Patient Session preregistered attendees with NMO participated in the Foundation’s Blood Draw. A total of 19 samples were collected onsite to be cached at The Guthy-Jackson Repository for NMO. The repository makes NMO blood samples available for scientific study to qualified researchers who work to find a possible cure for NMO.

Those who were not able to travel to Los Angles to attend the Patient Session logged onto the Foundation’s streaming webcast, where users watched live video and typed their questions to the panel. Other portions of the Patient Session included presentations about the incidence and prevalence of NMO, NMO treatments, NMO community social networking and more. At the end of the session, attendees had a chance to share their stories to members of the press and media to help raise awareness of NMO and tell others that they are not alone in this fight against this rare orphan disease.

“It never ceases to amaze me how powerful human interaction can be,” said Dr. Greenberg. “Listening to the stories of individuals and families living with NMO reminded myself and the other clinician scientists why it is we are working to end this condition. It also reminded us that we are partnered with one of the most dedicated and passionate groups of patients in the world.”

The Foundation gives special recognition to The Annenberg Foundation for its generous financial contribution supporting the 2009 NMO Roundtable Conference.

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