Feb 08, 2015 at 11:05 AM

ALSA, GM604 and Right-to-Try - Open, Honest Discussion Needed

By Jos Cofio

Discussing Issues Around ALS: ALSA, GM604, Right-to-Try

Open and honest discussions are essential in the discovery of fact and the forming of opinion. In the past days, much has been said about ALSA National, GM604, Right-to-Try, etc. We have joined in this debate on this page and elsewhere. There are people we respect who have spoken out on all sides of each topic and we learn from reading their sober thoughts and opinions. We love them and cherish them for their love, passion and compassion.

ALSA, GM604 and Right-to-Try - Open, Honest Discussion Needed


We have said that ALSA doesn't speak for us. What we meant by that is that those associated with ALS, in whatever form, are not a monolithic group. We believe that different opinions must be heard, and, in fact, encouraged. There are many bright, educated, insightful people among us, and there are many topics to discuss. Social media provides an opportunity to share, debate, disagree and reach consensus. We agree with those who say pointing fingers and using derogatory language does nothing to further the cause. We do not agree that falling in blindly, without question raised behind ANY organization is the proper course of action.

ALSA, GM604 and Right-to-Try - Open, Honest Discussion Needed


For example, the discussion about GM604, in our view, is less about that particular drug and more about the process by which drugs are developed. A process that, for ALS, has yet to yield any real results. We have supported efforts to accelerate access to this drug as a way to shed a bright light on the underlying problem with the overall process. We think that this is a valid debate.


We urge all involved to continue civil discourse. We pledge to do this ourselves. We must continue open and honest discussions, silence no one, and fall in shoulder-to-shoulder, not behind any institution, but behind the goal that ultimately does unite us - the end of ALS in our lifetime - the lifetime of those of us living with ALS. Onward!


Thank you.

Posted in Living With ALS.

Feb 09, 2015 Arrow1 Down Reply
Jeff Trull

I have ALS and have emailed my Senator and Senator Patty Murray My Story And Respectfully Requested That She And the FDA HELP Committee support Genervon GM604 Accellerated Approval for ALS and let them know that I Would Rather Be Allowed to Be Part of the Solution to the disease Rather than Merely A Statistic in Our Failure to Try! Please Do the Same To Show Your Support If you Agree!

Feb 10, 2015 Arrow1 Down Reply
Stephanie Jeffers

Please! I urge you to support the accelerated approval of GM604 for a friend and colleague who has recently been diagnosed.

Feb 10, 2015 Arrow1 Down Reply
Bill Kenyon jr

i was diagnosed two years ago my breathing is so bad I get out of breath just standing up. I want to believe there is a cure out there but I don't think I will be here much longer I am willing to try anything to stay alive Its hard to imagine a worse way to die This disease must be stopped

Mar 05, 2015 Arrow1 Down Reply
Francoise K. Pierre-Pierre

My daughter who is a single head of household, mother of two teenagers was diagnosed with ALS at the end of 2013. She is a professionally engaged in a field of activity whose purpose is to equip our society with committed, competent, compassionate and badly needed Social Workers. She is a marvellous human being, now in need of help to extend her life and that of her fellow sufferers, allowing them all to make their contribution. And she would be the first to say that all ALS patients, parents and friends need Hope, the kind of hope Genervon's GM604 may provide. Please support accelerated approval for this discovery which is making a difference. Bless all of you for your support .

Mar 10, 2015 Arrow1 Down Reply
Kathleen Dilkes

This diagnosis is a certain death sentence for those afflicted. These people DESERVE the right to this drug. They have every right to make the choice whether or not to try this medication.I am certain that my beloved niece would not hesitate for a chance to at least stop the progression of ALS.LETS GO FDA,GET IT TOGETHER!!!

Mar 15, 2015 Arrow1 Down Reply
Dean Hartman

I was diagnosed Oct 2015, and how my life has changed !!!GM604 cives me hope...only GOD knows how we feel... It's TIME,"HELP"

May 07, 2015 Arrow1 Down Reply
Peggy Duncan-Hughes

We have a great niece, newly diagnosed with ALS. She is in her 30's. Please help.

Jun 11, 2015 Arrow1 Down Reply
Mike Boydstun

I was diagnosed July 2014. From my perspective, we should have at least the right to make one of two basic choices with our life. Choices that should be ours to make:
1. Die from ALS,
2. Be given special access to experimental drugs showing to help, and let it be our decision to accept any/all risk involved based on positive results and risks from early trial results. Even if the drug resulted in 3 deaths per 10...that 70% better chance that what I have now.

The FDA bureaucracy is literally overwhelming. Humans have a very strong instinct to survive but any potential help from experimental drugs is controlled by another humans with much different motives and agendas. The FDA is extremely valuable but lacks common sense.