In June we attended MDA’s conference, ALS Clinical Trials: The Challenge of the Next Century, in Tarrytown, N.Y. We were thrilled to have this opportunity to speak to more than 150 experts in clinical studies and other avenues of ALS research. (See “Drugs, Stem Cells, Trial Designs,” July 2003, for a complete report on the conference.)
When we told our MDA ALS support group that we were going to speak to researchers, one member, then in the late stages of ALS, typed out a message for us to share. This spirited and positive woman wrote:
“Speed ‘em up.”
That was the theme of the conference and the message we shared — the urgency of getting research findings into clinical trials and treatments as quickly as possible — because friends and loved ones are losing the battle.
Intense Conversation
At the first evening’s dinner, we sat with Stanley Appel, director of the Ronny & Linda Finger MDA/ALS Center at Baylor College of Medicine in Houston, and his wife, Joan; Jeffrey Rothstein, director of the MDA/ALS Center at Johns Hopkins University in Baltimore; Rothstein’s research fellow, several other doctors and a bio-statistician. We were thrilled to hear the intense conversation buzzing around the table as these experts discussed theories and results.
These scientists’ dedication to ALS research was unquestionable, and the evening provided us with a renewed outlook on their ongoing efforts. We were both deeply moved, and Jennifer tearfully thanked them all for their support.
We attended the next morning’s session, chaired by conference co-director Hiroshi Mitsumoto, who had invited us to New York. He’s co-director of the Eleanor and Lou Gehrig MDA/ALS Center at Columbia University in New York.
We were very impressed with the detail in each presentation as well as the wide range of subjects covered. It was evident to us that the overall goal of the event would be achieved, i.e., to advance the methods and procedures of ALS clinical studies and to minimize or eliminate the need to reinvent the wheel.
The afternoon session on lessons from studies in other diseases and clinical trials was testimony to the progress MDA scientists want to make in ALS. From our conversations and observations, we came away believing that the conference had a profound impact on the participants. Several scientists commented on the need for collaborative efforts among institutions and suggested our time at the podium could encourage this theme. They felt that adding a human element to the scientific process would be of great value.
Personal Message
The evening dinner celebrated Lou Gehrig’s 100th birthday (June 19). After an overview of Gehrig’s life and presentations by several researchers, we were introduced by Victor Wright, a member of MDA’s Board of Directors.
We told our story and pleaded for all parties to work together and share their findings, failures and successes. We told them about the message from our friend in Denver, and emphasized that we have friends dying from this disease.
We were honored to be invited to the conference and to share our thoughts of appreciation, encouragement and urgency with this influential group. We commend Dr. Mitsumoto and his co-chairman, Serge Przedborski, as well as the other organizers, presenters and participants for the time and energy they expended on this event.
On June 17, two days after we returned home from New York, our friend who had urged researchers to speed up lost her battle with ALS. Her loss was another sad reminder of how important it is to get the word out about ALS and how many people it truly affects.
Thank you to MDA for sponsoring the conference and for trusting us to add meaningful insight. It’s events like this that continue to provide us with hope that there will be a treatment or cure for ALS — maybe in time for Steven, and certainly for others who’ll be affected by this revolting disease in the near future.
ALS Living - The Bishops' Perspective 
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