NMO Roundtable Conference & Patient Day to Discuss Advances Toward Solving NMO

LOS ANGELES, March 2, 2015 /PRNewswire/ -- Encouraged by new, targeted smart-drug candidates and promising research into re-training the immune system to restore health, 150 of the world's top doctors and medical researchers, joined by representatives from healthcare, pharmaceutical and other industries, will share their insights into solving NMO at the 2015 NMO Roundtable Conference.  The seventh annual conference will take place March 2-3, segueing into the sixth annual NMO Patient Day on March 4, at the Hilton Los Angeles Airport, sponsored by The Guthy-Jackson Charitable Foundation.

The NMO Roundtable Conference, entitled "A Rare Approach to A Rare Disease," is focused on a cure for neuromyelitis optica (NMO) spectrum disease, a rare disorder often misdiagnosed as multiple sclerosis.  Also known as Devic's Disease, NMO attacks the optic nerves and spinal cord, causing vision and sensory loss, paralysis of the extremities, and potentially worse.

This year's Roundtable Conference will draw medical professionals from 15 countries around  the world, representing such leading research institutions as the Mayo Clinic, Stanford University, Johns Hopkins University, Harvard Medical School, Duke University Medical Center Cedars-Sinai Medical Center, University of California (Irvine, Los Angeles and San Francisco) Harbor-UCLA Medical Center, New York University, Oxford University, Swedish Neuroscience Institute, University of Southern California, and Yale New Haven Medical School, among others.

Dr. Michael Yeaman, Professor of Medicine at UCLA, and Chief of Molecular Medicine at Harbor-UCLA Medical Center / LABioMed, serves as Chair of the Foundation's advisory team and will moderate several sessions.  "This is the first Roundtable Conference to take place following the initiation of encouraging new clinical trials which were catalyzed by the Foundation," says Dr. Yeaman.

The 2015 Conference will discuss advances that allow a better understanding of immune dysfunction in NMO patients, including recent research into "reeducating" the immune system to restore tolerance through treatments that aim to end the need for lifelong therapy. In addition, the field is leveraging a shift toward smart drugs that use antibodies to achieve targeted results with potentially fewer side effects.  The Foundation also welcomes the imminent publication of two papers:  one on updated diagnostic criteria that will help to more clearly and rapidly identify NMO and distinguish it from lookalike diseases such as MS, the other laying out a consensus blueprint for the design of clinical trials to best serve unmet patient needs by integrating perspectives of all stakeholders, including regulatory guidance.

Currently, NMO in the United States is estimated to affect approximately 1 in 25,000 people (previously published studies cited 1 in 100,000), and seems to occur at roughly this frequency around the world. Global statistics on the prevalence of NMO has yet to be determined.

"The fact that several major pharmaceutical companies will be at the Roundtable Conference says a lot about the potential opportunity to develop new strategies and drugs that not only address NMO, but also hold promise to benefit more common autoimmune conditions, such as multiple sclerosis and type 1 diabetes," explains Dr. Yeaman.

The subsequent NMO Patient Day enables both patients and caregivers to learn about new research and clinical advances, personally interact with medical experts, and network with one other.  Nearly 400 people will attend sessions on topics ranging from medical advances to lifestyle tips.  The Foundation provides dozens of full and partial travel grants assisting patients and caregivers with financial needs, both across the U.S. and worldwide.  While receiving a breadth of education, including a comprehensive take-home resource guide, patients also volunteer in making essential contributions to solve NMO:  donating blood samples and medical data onsite to The Guthy-Jackson Biorepository for NMO.

The only such organization dedicated to this rare disease, The Guthy-Jackson Charitable Foundation was founded by Bill Guthy and Victoria Jackson in July 2008 shortly after the diagnosis of their daughter, Ali, with NMO.  Jackson, a prominent Los Angeles entrepreneur and philanthropist who founded Victoria Jackson Cosmetics, has been the driving force behind the Foundation, leveraging her passion, resources and relationships to fund research and champion a cure for a disease that has been largely unknown within the medical community.

Jackson will open the 2015 Roundtable Conference on the morning of Monday, March 2.  As in previous years, she will also bring a team of nearly a dozen makeup artists to give free makeovers to NMO patients as they arrive the afternoon of Tuesday, March 3 in advance of Patient Day on Wednesday, March 4, when Jackson's daughter, Ali, will present her story to attendees.

"Because there was no organization focused on solving NMO before us, the Foundation has had the opportunity to create a blueprint for tackling a rare disease – from developing standardized protocols for research, to facilitating clinical trials, to engaging some of the best and brightest people and institutions worldwide in convergent thinking – allowing us to make significant progress in less than seven years," says Jackson.  "We see how far we've come, and it's an inspiration for the work ahead.  If we can find a cure for NMO, it's exciting to foresee its potential benefit for other autoimmune conditions and millions of people everywhere."

About The Guthy-Jackson Charitable Foundation
The Guthy-Jackson Charitable Foundation is dedicated to funding research that will lead to the prevention, treatment and eventual cure for neuromyelitis optica (NMO) spectrum disease, also known as Devic's Disease, a rare neurological disorder often misdiagnosed as multiple sclerosis (MS).  It also provides centralized information resources and an online community for those diagnosed with NMO.  Founded by Bill Guthy and Victoria Jackson in July 2008, the Foundation was established shortly after their daughter was diagnosed with NMO.

Since 2008, Bill Guthy and Victoria Jackson have funded appx. $40 million to support NMO research. They have funded 45 NMO research projects at top medical institutions in the U.S. and worldwide, hosted annual NMO-dedicated medical conferences, and launched an NMO repository to collect much-needed blood samples and data for continued research. For more information, please visit www.guthyjacksonfoundation.org. Information about "Saving Each Other," by Victoria Jackson and Ali Guthy, the story of a mother and daughter's fight against a rare disease, can be located at http://savingeachother.org/.

SOURCE The Guthy-Jackson Charitable Foundation

Related Links

http://www.guthyjacksonfoundation.org