The ALS Association Hosts 15th Annual International Symposium on ALS/MND
by Gary Wosk, Staff Writer
For the first time, The ALS Association will host the Annual International Symposium on ALS/MND.
Nearly 700 international experts in the field of Lou Gehrig’s disease will reveal the latest progress being made on identifying the cause of the disease as well as new and improved ways to care for patients.
More than 100 presentations will be made by the world’s leading scientific and clinical investigators — and debated by the research attendees — at the 15th Annual Symposium in Philadelphia, December 2-4, at the Marriott Hotel.
Mary Lyon, R.N., M.N.
“The Annual International Symposium on ALS/MND is the preeminent scientific meeting on ALS,” said Mary Lyon, R.N., M.N., vice president of Patient Services. Lyon leads the organization’s efforts in improving the quality of life for people with ALS. “The ALS Association is proud to be the host organization this year and we welcome everyone to join us in Philadelphia.”
Lyon, responsible for developing, implementing and evaluating patient and caregiver programs, will co-chair two presentations: “Continuity of Care,” and the Allied Professionals Forum.
The Symposium is planned and organized by the Motor Neurone Disease (MND) Association, based in Great Britain, and also is hosted by ALSA’s Greater Philadelphia Chapter.
“The importance of the high degree of positive synergy generated by convening the Symposium each year cannot be under-estimated,” said ALS Association President and CEO Gary Leo. “The spirit of teamwork that pervades this event fuels future international collaboration to find a cure for the disease, and that translates into new-found hope for people with ALS and the professionals looking for answers.”
The Symposium is two parallel meetings, one on scientific research and the other on clinical management research (the care and management of people affected by ALS/MND). Joint sessions consider issues of mutual concern, challenging current views and practice.
Throughout the Symposium, nearly 200 research posters will be displayed, illustrating how studies were designed and conducted and the results.
“The dual tracks of science and clinical management research presentations and posters offer the most concentrated gathering of world-wide ALS research and newest scientific findings,” Lyon said. “It is impossible to attend the International Symposium and not be encouraged and stimulated by the growing body of knowledge gained one year to the next and the advances in clinical care.”
Lucie Bruijn, Ph.D.
ALSA’s science director and vice president since 2001 has played an important role in shaping this year’s Symposium.
“The Symposium provides an excellent platform for review of the most current data in ALS research and brings together world leaders in the field,” said Lucie Bruijn, Ph.D., who serves on the Symposium’s program committee.
ALS is an equal opportunity disease, stressed the director of Research Development at the MND Association.
“ALS does not respect national boundaries,” said Dr. Brian Dickie. “The scientific and clinical research communities from all four corners of the world must work closely together if we are to understand and defeat this devastating disease.
Dr. Brian Dickie
“Simply by bringing like-minded specialists together under one roof we foster international collaboration, which undoubtedly accelerates the rate of scientific progress.”
ALSA also is co-sponsoring two events before the Symposium begins.
November 30 — A program of the 12th Annual Meeting of the International Alliance of ALS/MND Associations, “Ask the Experts,” is an educational Q&A program designed for patients and families.
December 1 —Allied Professional’s Forum, a collaboration between the Allianceand MND Association. The purpose of the one-day seminar is to foster the exchange of information and good practice among health and social care professionals in order to facilitate the highest standard of care for people living with ALS.
Topics of interest during the 12th Annual Meeting of the International Alliance of ALS/MND Associations, Allied Professionals Forum and Symposium include:
Trends in Care Management: Continuity of care
Cognitive Changes: The identification and management of cognitive and behavioral abnormalities in ALS/MND
ALS- Frontal Temporal Dementia: Impact on the patient and career
Establishing subtypes of the continuum of frontal lobar impairment in ALS
Non-invasive ventilation: Randomized controlled trial of non-invasive ventilation in ALS
Communication: Brain-computer interfaces
Dysphagia and Nutritional Management: VitalStim for the treatment of dysphagia in patients with motor neuron disease
ALS and soccer: from media to scientific data
Environmental neurotoxins, ALS/PDC and ALS
Axonal Transport Abnormalities in axonal transport lead to motor neuron death. Experts in this field will share their recent data on how this relates to understanding disease mechanism.
Biomarkers Identification of signatures that will allow for earlier diagnosis and improved clinical trials
VEGF
The role of Vascular Endothelial Growth Factor (VEGF) in ALS
ALSA’s national office and the Greater Philadelphia Chapter are working closely with the event’s organizer to decide how and where volunteers can best make contributions during the Symposium, as well as advising delegates on travel options.
“The Chapter’s volunteers and staff are doing everything they can to make sure this year’s Symposium is the most successful and exciting one yet,” said Chapter Executive Director Jim Pinciotti, “and that includes handling many of the logistics issues such as transportation and on-site volunteer coordination. We hope that our involvement will contribute to a positive experience for everyone.”
ALSA National Trustee Andrew Fleeson, diagnosed with ALS 22 years ago and a former member of the Board of the MND Association, will be among the ALSA officials participating at the Symposium.
Andrew Fleeson
“This gathering is the most important, influential and significant annual event for the ALS community,” Fleeson said. “Its impact on and value to ALS/MND patients cannot be overstated. No other event demonstrates better the substantial strides that have been, and will continue to be, made to conquer Lou Gehrig's disease. No other event raises, and provides, more hope that there will be an end to this nightmare."
Previous Symposiums have been held in England, France, Germany, Denmark, Australia and Italy. The last Symposium in the United States was held in Oakland, Calif., in 2001.
Last year’s 14th Symposium was held in Milan, Italy. Highlights included presentations on improvements in the management of ALS, reports on end-of-life care, stem cell implants, non-invasive ventilation, mental depression, the role of epidemiology in research and care provision, Riluzole experience in patients, a trial of creatine in patients, and placebo-controlled studies of minocycline in ALS.
