Guthy Jackson Logo

Guthy-Jackson Foundation NMO Roundtable Conference, November 9 – 11, 2009

Pauline and I were honored to be invited to the second NMO Roundtable Conference in Beverly Hills, California.  Victoria Jackson and Bill Guthy established the Foundation shortly after their daughter was diagnosed with NMO.  As with everyone who receives one of the rare neuroimmunologic disorders diagnoses, they had never heard of NMO and they were entirely confused, frustrated and anxious about their daughter’s condition and her future.  But unlike most people who get this diagnosis, the Guthy-Jackson family has the resources and the experience to change the future of science and medicine in regards to our understanding of NMO and the development of effective treatments for this disorder.  Beginning just over a year ago, the Foundation began to assemble the leading neuroimmunologic disorder specialists and researchers in the world.  The Guthy-Jackson Foundation is funding research at some of the most prestigious medical centers across the country.  The Foundation has also created an exceptional leadership and organizational structure that is guiding the directions of the research.  They also announced the establishment of a multi-centered consortium that will be funded by the Foundation.  The Foundation is committed to scientific collaboration and to the rapid translation of research into clinical care and effective and safe treatments. 

During the first two days of the conference, scientists from across the country and around the world presented the results of their research.  The studies are amazingly varied, but all of the work is focused on finding ways to stop the inflammatory episodes and to ultimately find a cure for neuromyelitis optica.  For the third day of the conference, more than thirty people with NMO were invited to a session, along with their caregivers, where they heard presentations from the leading NMO clinicians.  The program included a discussion of the incidence and prevalence of NMO, the diagnostic criteria, the symptoms of the disorder and some of the symptom management strategies.  There were also presentations about the immune-suppressant therapies for NMO.  The patient session concluded with a question and answer program.  Patients and caregivers were provided the opportunity to engage in an exchange with the experts for the entire afternoon.  During this session, Dr. Brian Weinshenker offered a very touching and well deserved acknowledgement of the work of Grace Mitchell who leads the Devics Support Network.  Grace has tirelessly offered support and information to people who have NMO and participate in this internet community.  Everyone in the room appreciated Dr. Weinshenker’s wonderful gesture in recognizing Gracie.

Hollie Schmidt from the Accelerated Cure Project described the history and purpose of the ACP repository.  Through the efforts of Dr. Benjamin Greenberg and his staff from the University of Texas Southwestern, approximately 20 people with NMO were enrolled into the repository during the conference.  The patient session was web cast around the world to people with NMO who were not able to attend. 

The Foundation has committed to including the patient sessions as an important part of the NMO Roundtable Conference.  The Foundation has also developed a portion of their web site, entitled Spectrum, which they are hoping will become the vehicle through which people with NMO can network, as well as seek support and information about their disorder.