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Brian Wallach Profile picture
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14 Sep, 3 tweets, 2 min read
Yesterday, 7 Senators joined as co-sponsors of #ACTforALS.

A few weeks ago I wrote a thread about ACT (see below).

In summary: this bill will save lives and give hope to those living with a 100% fatal disease while furthering research into ALS and dozens of other diseases.
Right now ACT is the House and Senate Committees but that will change soon.

To make soon ASAP, go to the link below and look up your Rep and Senators.

If they are already a co-sponsor send them a thank you and urge them to make ACT a priority.
iamals.org/legislation/ac…
If they have not yet co-sponsored ask them to do so and ask for any concerns they have.

We have answers for nearly every concern ready to go and a team ready to get your back.

All we need is your passion, voice and story.

Let’s f’ing do this. #ItsTime

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More from @bsw5020

Brian Wallach Profile picture
1 Sep
When I was diagnosed with ALS one of the first things I did was sign up for the @CDCgov ALS Registry.

I assumed it was doing good work and that after a decade in existence it was helping lead the fight for cures.

I was so wrong. Enough is enough. /1
It is universally accepted that the CDC’s number for ALS patients in the US is wrong, missing HALF of all ALS patients, including a disproportionate share of people of color.

Thinking that they would be doing everything possible to correct this I met with them 2x in 2019. /2
After a 45 minute presentation on the virtues of the Registry, they told me they had updated numbers showing a much larger patient population and were working to release them asap.

2 years and more than 12,400 ALS patient deaths later they still have not released new numbers. /3
Read 12 tweets
Brian Wallach Profile picture
30 Aug
When the House and Senate formed ALS Caucuses at the request of advocates I was elated.

Those who represent us recognized that we needed to act now to end a 100% fatal, 160 year old disease.

That enough was enough. /1
The Caucuses have helped transform the fight—raising funding, awareness and helping pass SSDI reform.

I and the entire ALS community are grateful to these amazing champions.

But we need them more than ever right now to pass ACT for ALS. /2
Today more than 50% of ALS patients, including me, are excluded from being a part of ANY clinical trial.

This means we have no way to access promising therapies and are simply left to die.

I hope we can all agree that this is not right. /3
Read 10 tweets
Brian Wallach Profile picture
6 Jul
In the heart of the 2020 campaign, @JoeBiden met with @AdyBarkan and made a promise to create ARPA-H, modeled after DARPA, to end ALS, Alzheimer’s, Cancer and Diabetes. As someone living with ALS, which has been terminal for 160 years, I literally danced when I saw👇 video. /1
After his election, @POTUS made good on part of his promise: he submitted to Congress a request to fund a $6.5 billion ARPA-H. The problem was that the request named Alzheimer’s, Cancer and Diabetes as the focus, conspicuously leaving out ALS. /2
sciencemag.org/news/2021/04/b…
Why does this matter? ARPA-H is a once in a generation moonshot. As NIH states: it is “investment in bold and emergent research opportunities is both high-risk and high-reward, and will collapse barriers and speed the development...of urgently needed health breakthroughs.” /3
Read 6 tweets
Brian Wallach Profile picture
26 Mar
When I go to bed and wake every morning, I think the same thing: I want to be here to see my daughters grow up. Six months ago I thought that and then got out of bed on my own. Now I wait for my wife to help. This is life with ALS. Always has been and will be unless...
...we act now. The love and support I’ve found here are amazing, but if you ask what I really want, it is action. A movement of people that rise up together to say this system in which we watch ALS patients fade into death is unacceptable and must change now. A clarion call...
...to attack ALS with the urgency of COVID. That is what I dream of and fight for. But I need you to help rewrite the ALS story, otherwise the ending will always be the same. So go here 👇, act now for those who simply seek a chance. As for me...

iamals.org/action/
Read 4 tweets
Brian Wallach Profile picture
25 Jan
I’m often asked how I am doing. I usually don’t answer as the answer is complex.

The simple one line response is: I’m alive and life is indeed beautiful.

The truth is, as always, more complicated. Six months ago I could walk around our block with just a cane, I could.../1
...get on the peloton on my own, get out of bed, get dressed, shower and shave on my own. And my voice was strong enough for 9 hours of conference calls a day. Today, my wife and others help me with each of these things. Today, the voice is at times so weak my wife has to.../2
...interpret for me on calls. Today I zoom around in a wheelchair and walk slowly, haltingly up and down stairs.

At the same time, my mind has never been sharper, the amount I get done in a day has never been greater, and my capacity to be present in a moment never higher. /3
Read 5 tweets
Brian Wallach Profile picture
19 Dec 20
After dinner my mom and I began talking about growing up in DC and she told me the most amazing story about Dr. Fauci.

My father passed away in 2001. My youngest brother was 14. He grew up to become a good baseball player. His senior year my mom would go to every game. /1
At one game she sat next to a nice man who introduced himself as Anthony Fauci. He asked my mom if she had a son on the baseball team. She said yes and pointed to my brother. He then asked if my dad came to the games. She explained that he had passed away a few years ago. /2
After that game Dr. Fauci attended as many games as possible, each time cheering for my brother as if he was his own son. When my brother made a good play, Dr. Fauci would congratulate my mom. When my brother got a hit, Dr. Fauci’s cheers were eclipsed only by my mom’s. /3
Read 4 tweets

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