Brian Wallach

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Nikki J

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Mar 22, 2012
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16,385
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PALS
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04/2014
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US
State
MA
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Boston
I hope many of you saw the congressional hearings yesterday. There was a lot of discussion about ALS and questions for the FDA. Several ALS specialists testified. The absolute high point though was Brian Wallach the founder of IAMALS. He testified with his wife Sandra.

please share the link freely
 
That was a long day yesterday Nikki. I don't think anything was as compelling as when Brian and Sandra spoke.
 
I agree. They didn’t say anything I didn’t know of course but I was in tears Every politician and the entire FDA should be forced to watch it multiple times. How anyone with a shred of humanity could listen and not be moved to help is beyond me
 
Now let's hope it doesn't fall on deaf ears. They need to understand that we have nothing to lose by taking experimental drugs, time is not on our side to wait for the drugs that show promise to get FDA approval. I hope everyone contacts their congressmen to let them know how important it is for resolve now not later.
 
I’ve watched this powerhouse presentation three times and cried like a baby each time. I have grown to love Brian, Sandra, and their family. I am thankful every day for their tireless efforts through IAMALS.

The strength of will for Brian to travel to DC, sit in the chambers for ten hours, and then give this presentation with his amazing partner is incredible. His voice has never been stronger.
 
Great guy, I've had the opportunity to talk to him a couple times. I am ALS is doing fantastic things.
 
Thank you for sharing. Brian and his wife have led efforts to help ALS patients and I am grateful.
 
Wow. That was so moving. It really hits the heart. Let’s hope it hits theirs. Thank you for sharing Nikki.
 
Wow! That is powerful!

Dr. Cudkowicz shared this in her testimony, which I find simple yet profound:

The husband of one of my patients shared these thoughts about the chance to be part of research:

“What does your research mean to us? It gives us HOPE. Hope begins at diagnosis. You hope they got it wrong. Then you hope you have a slow version. Then you hope you’ll get to experience specific holidays and graduations. But through it all, the greatest HOPE is that someone will find something to make this all go away. And research provides that.”


Could someone help me out on this? I'll be reaching out to my congressman and two senators. How do I articulate what we hope to accomplish here so it resonates? Is there currently specific legislation, such that I can reference a bill? Should I propose they introduce legislation? Or are we simply looking for our representatives to pressure the FDA for increased transparency and access to promising treatments through true implementation of the 2019 Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment Guidance for Industry?

Thanks...Jon
 
Go to IamALS dot org and click on take action there are links to contact your congresspeople on the specific legislation
 
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