Message from Barbara J. Newhouse, President and CEO

January 23, 2015

I have received hundreds of notes and emails during the past couple of weeks regarding a potential treatment that is currently in clinical trials.  Many of those notes describe the horrendous journey people face during their battle with ALS.  Others have shared stories about themselves, their fears, their families, their aspirations and their inspirations.  I have read each one and have spent many hours reflecting on my commitment to you and to our community.

I am taking this opportunity to share a few thoughts with you. The first, and foremost, is that I have gained a greater understanding of your perspectives through your sharing. As best I can, I truly understand the life-altering significance of your situation.  YOU are my priority, and I will continue to identify ways to mobilize our resources to represent you, your families and caregivers.

I support your right of personal choice and access to effective treatments as quickly as possible.  As we are all learning that is easier said than done. I am committed to moving existing relationships and processes forward wherever I can and developing new relationships and processes based on individual situations.

The conundrum, as many of you have pointed out, is there are often many players involved – community, organizations, companies, government – and sometimes their priorities are not aligned.  What I can say is that I am committed to building collaborations that achieve the results that serve you and your families. 

I would be remiss if I did not mention current speculation around Genervon’s news releases on its GM6 study and its implications.  Initial outreach was made to Genervon last week. Since that outreach, we have reached out several more times. Lucie Bruijn, our Chief Scientist, has not had her calls returned. Therefore, we have no information on what their plans are for addressing the FDA, whether or not they would consider an expanded access program, or what the parameters/cost of such a program would look like.  If we had that information, we could develop strategies to optimize our support.

Many of you have shared pieces of your lives with me, and I want you to know how honored I am that you took the time. I am listening, and I understand your frustration. I am committed to continuing to represent your interests with genuine resolve.

Together for a cure,

Barb 

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