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PRESS RELEASE: I AM ALS Congressional Testimony

April 9, 2019  -  I AM ALS

WASHINGTON – Today, I AM ALS Co-Founder Brian Wallach testified in front of the House Appropriations Subcommittee on Labor, Health and Human Services, Education and related Agencies regarding the need for increased funding for amyotrophic lateral sclerosis (ALS) research.

Full testimony below:

“Chairwoman DeLauro, Ranking Member Cole, Members of the Committee, thank you for the opportunity to testify before you today. My name is Brian Wallach. 

I am 38. At the age of 37, I was diagnosed with ALS.  My diagnosis was a shock because I have no family history of ALS.  It turns out that 90% of ALS patients don’t.  That’s because ALS, like cancer, can and does affect anyone.  In fact, in just the five minutes I am before you someone else will be diagnosed with ALS.  

I am the father of one and three-year-old girls. In the aftermath of my diagnosis, my wife, Sandra—who is here with me, and I cried, and held our family tight. 

We did so because today an ALS diagnosis means I will not see my daughters grow up. ALS is currently a death sentence. Not because it cannot be cured. But because we have underfunded the fight against ALS year after year after year.

I am here today to ask you to rewrite the ALS story. I am here as a co-founder of I AM ALS, a patient-led, patient-centric movement to defeat ALS. I am here on behalf of my family and the incredible ALS community. To ask you to see us, hear us, and to fully fund our fight so we can finally defeat ALS. 

A year and a half after my ALS diagnosis I am, as Lou Gehrig famously said, lucky. I am alive. Of those diagnosed the same day as me, nearly one-fifth are dead. This time next year, nearly half will be dead.  

I am also lucky in that I can still walk, speak and hug my young daughters. And while I am lucky to be alive--as you can hear in my voice--my body is starting to fail me.  

Despite this, I sit here filled with hope.  Why?  Because we can actually cure ALS.   How?  By fully and boldly funding the fight against ALS. Just like you did with HIV 30 years ago. And when you do, it will help unlock cures for Alzheimer’s, Parkinson’s, and beyond.

The research this Subcommittee has funded over the last decade enables me to say—and truly believe—that it is no longer a question of if we will find cures for ALS, but when. The opportunity to end ALS is here. Now. But to do so requires a significant, bold new investment to make when “as soon as possible.” 

In 2017, NIH spent approximately $13,000 on ALS research per person in the U.S. who died from ALS.  We spend between 3 to 16 times that amount on diseases that kill a fraction of the people that ALS does. We spend 5 to 10 times that amount in public and private care costs for people living with ALS. Much of which is shouldered by families fighting ALS.

Imagine, for a moment, if we spent the same amount on cures for ALS as we do on caring for those given this death sentence?  If we did, we would finally end ALS. 

If we did, I will have a chance to see my daughters graduate from kindergarten, high school, and college.  You have the power to make that happen.

I beg you to give me and the tens of thousands of Americans living with ALS that chance.  We can’t wait another decade for a cure. If we do, more than 1.3 million people across the world will die from ALS.  Including me.  

I know you don’t often hear from people with ALS in hearings like these. You don’t because ALS is a relentless churn.  We are diagnosed.  We die.  Quickly.  We don’t have time to advocate.  Every day is a fight for survival.  And it is a fight we will all lose.  All of us.  

This is not acceptable.  

You have the power to change this reality. 

You have the power to save our lives.  

I thank you for having the courage to do so. And I look forward to working with each of you to finally defeat ALS.”

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About I AM ALS

Founded in 2019 by Brian Wallach and his wife, Sandra Abrevaya, I AM ALS was born out of their desire to change the future for Brian and the thousands of other ALS patients in the world. I AM ALS brings together patients, advocates, organizations and scientists to deliver critical and innovative resources for patients, empower and mobilize patients and their networks to lead the fight for a cure, and transform the public understanding of ALS with a goal of flooding the research pipeline with new, lifesaving drugs. A cure is possible ... if we work together to re-imagine the fight against ALS. Learn more here: https://iamals.org.

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