|Promising Developments in ALS Research Discussed at Special Event Co-Hosted by MDA and The ALS Association Golden West Chapter
- By Jenica Lancy, Director of Marketing and Communications
(October 12, 2011- Los Angeles, California)
second annual California ALS Research Summit, The ALS Association
Golden West Chapter and the Muscular Dystrophy Association held a
special event open to the public
experts discussing the most promising developments in familial and
evening opened with a facilitated
conversation to increase awareness of key issues facing people with
ALS (fALS) and their families, led by Steve Gibson,
Policy Officer for The ALS Association and by Greg Merfeld, advocate and
person with fALS. Link to Video
was the first of hopefully many meetings of this type,” said Merfeld.
the fALS population is relatively small in size, we have an enormous
play in the ALS community.”
a great opportunity to come together and learn about the exciting
in research and public policy,” shared Gibson.
goal for our
to encourage volunteerism, advocacy, clinical trial participation by
patient and family members, and provide another layer of support and
Steve Gibson and Greg Merfeld, leading the fALS session
continued with a program titled, “Ask the
Experts -Commitment to a Cure.” The
event was moderated by Dr. Lucie Brujin, Chief Scientist for The ALS
Association, with opening comments by Fred Fisher, President and CEO of
Association Golden West Chapter, both of whom are members of the
“It is an incredibly hopeful time for ALS,” Brujin
“There is so much going on in the research arena and such brilliant
working on it. "
Dr. Robert Miller and Dr. Lucie Brujin, listing to questions
Dr. Seward Rutkove during his presentation
"What you will hear today
will reflect some of that excitement and give you an opportunity to ask
directly of the researchers," said Brujin.
the following featured presentations:
Forbes Norris MDA/ALS Research Center,
“Clinical Trials for ALS”
Link to Video
Dr. Clive Svendsen
Director of Regenerative
“Overview of the ALS California
Link to Video
Dr. Richard Smith reviewing the ISIS Study
- Dr. Bob Baloh,
Assistant Professor of Neurology, Washington
University, “The Role of the Protein TDP43 in
Link to Video
Dr. Richard Smith,
Director, Center for
“ISIS Study Update”
Link to Video
Dr. Seward Rutkove,
Division of Neuromuscular Disease,
Beth Israel Deaconess Medical Center
Winner of the Prize4Life ALS Biomarker Challenge.
Link to Video
The Experts’ was a very good conclusion of the Research Summit, as
excellent speakers could stay on and inform the ALS community,” said Dr.
Martina Wiedau-Pazos, Assistant Professor of Neurology, UCLA School of
and member of the Network. “I would like to continue this model for
California ALS Research Summits,” said Svendsen, who also serves as the
of the California ALS Research Network. “Knowing that we will be
rotating the Summit location each year
will enable us to access different patient groups in different
areas. I am very committed to presenting this emerging science directly
patients and families. It is essential to those who are holding on
disease and relating their clinical experience to us. The scientists
are very indebted to the ALS
community and I think many would really like to talk one-on-one with
More than 150
people with ALS and their families were in attendance, through the
of The ALS Association and The Muscular Dystrophy Association.
traveled long distances from areas like Bakersfield, Fresno, San Diego
Francisco to be at the UCLA campus in person for this
event. The event was also the Chapter's first live web cast, and to date, more
than 1760 streams, of which 245 unique viewers from 9 countries have been able to view the presentations. The videos are all now on the Chapter's YouTube Channel.
“I was very excited that both The ALS
Association and Muscular Dystrophy Association co-promoted this event,”
shared. “It is truly all about the
patients and to have both national organizations reach out to the
community was outstanding.
"The ALS Association's efforts to live stream
via the Internet enabled questions to be asked and answered from both
attendance and from the audience watching.
It created a great atmosphere for all.
Many people with ALS and their families have great difficulty in
attending these key meetings in person and the ability to participate
whenever and wherever these events take place, was a godsend."
from the webcast chatted in their words of appreciation. “We want to express our thanks for
opportunity to listen, to learn, and to participate,” said one. "We
the efforts on the part of the scientists, sharing their time and
another. "I was encouraged to see so many
recent advancements in somewhat rapid succession," said Linda
Della who's husband's family has experienced three generations of ALS.
"It is also so helpful to be able to attend these meetings via webcast
and stay connected to the latest breakthroughs that may help us
understand the many causes of familial ALS."
Event organizers and speakers agreed about the
importance of broadening the audience for these educational events.
the continued involvement of people with ALS and their families, we can
even greater progress in the fight to find a treatment as soon as
evening’s conclusion, Jim Barber, Co Chair of the California ALS
and a person with ALS, offered his personal insights. “I would like to
my thanks to my wife Cheryl and to extend that thanks to all of the other
and caregivers who helped their loved ones attend this event tonight.
There have been more breakthroughs in
research since I was diagnosed four years, than have been in the history
disease. The members of California ALS
Research Network are absolutely first rate and worthy of our support.”
many people with ALS and their families who, like Jim Barber and Greg
are engaged in the fight against this disease,” said Fred Fisher,
CEO, The ALS Association Golden West Chapter.
“We invite you to join with them in their efforts and others across the
country as we continue to fight this disease.
We are here for you in this fight.
It is very exciting to be a part of this time in ALS research.”
To view more photos, please visit our flickr site.