Following the 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 with ALS experts discussing the most promising developments in familial and sporadic ALS research.

The evening opened with a facilitated conversation to increase awareness of key issues facing people with familial ALS (fALS) and their families, led by Steve Gibson, Chief Public Policy Officer for The ALS Association and by Greg Merfeld, advocate and person with fALS. Link to Video

“This was the first of hopefully many meetings of this type,” said Merfeld. “While the fALS population is relatively small in size, we have an enormous role to play in the ALS community.”

“It was a great opportunity to come together and learn about the exciting developments in research and public policy,” shared Gibson.

“Our goal for our presentation was to encourage volunteerism, advocacy, clinical trial participation by both the patient and family members, and provide another layer of support and resources," said Merfeld.

Steve Gibson and Greg Merfeld, leading the fALS session

The evening 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 The ALS Association Golden West Chapter, both of whom are members of the California ALS Research Network.

“It is an incredibly hopeful time for ALS,” Brujin said. “There is so much going on in the research arena and such brilliant minds 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 your questions directly of the researchers," said Brujin.

The program the following featured presentations:

• Dr. Robert Miller,
  Medical Director,
  Forbes Norris MDA/ALS Research Center,
  “Clinical Trials for ALS”
  Link to Video

• Dr. Clive Svendsen
  Director of Regenerative Medicine Institute,
  Cedars-Sinai,
  “Overview of the ALS California Research Summit"
  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 ALS”
  Link to Video

•  Dr. Richard Smith,
  Director, Center for Neurologic Study,
  “ISIS Study Update”
  Link to Video 

• Dr. Seward Rutkove,
  Chief of the Division of Neuromuscular Disease,
  Beth Israel Deaconess Medical Center
  Winner of the Prize4Life ALS Biomarker Challenge.
  Link to Video

More than 150 people with ALS and their families were in attendance, through the invitation of The ALS Association and The Muscular Dystrophy Association. 

Many traveled long distances from areas like Bakersfield, Fresno, San Diego and San 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,” Merfeld shared.  “It is truly all about the patients and to have both national organizations reach out to the patient community was outstanding.

"The ALS Association's efforts to live stream this event via the Internet enabled questions to be asked and answered from both those in 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 live, whenever and wherever these events take place, was a godsend."

Participants from the webcast chatted in their words of appreciation. “We want to express our thanks for the opportunity to listen, to learn, and to participate,” said one. "We appreciate the efforts on the part of the scientists, sharing their time and expertise,” said 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. “Through the continued involvement of people with ALS and their families, we can make even greater progress in the fight to find a treatment as soon as possible,” said Gibson.

“There are many people with ALS and their families who, like Jim Barber and Greg Merfeld, are engaged in the fight against this disease,” said Fred Fisher, President and 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.”

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