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“Don’t Help Us, Join Us”: Reimagining the Fight to Find Cures for ALS

Brian Wallach is a former Obama staffer, an associate at Skadden, Arps, Slate, Meagher & Flom, a husband, and a father—and in February 2018, he was diagnosed with amyotrophic lateral sclerosis, better known as ALS. If the first thing that comes to mind when you hear ALS is the Ice Bucket Challenge, you’re not alone. For many of us, the viral social media sensation that raised millions for ALS research is our only context for the disease.

 

Wallach was one of many who did not have a deep understanding of ALS when, in November 2017, his doctor alluded to what would soon be confirmed as his reality. Today, Brian Wallach and his wife, Sandra Abrevaya, are making it their mission to ensure that ALS is no longer a mysterious disorder associated to a viral social media campaign, but a challenge with a roadmap to a cure.

 

I AM ALS, which launched today, is reimagining the fight against ALS. It is a movement toward cures based on the belief that together, we can do anything. Through this movement comes a new army of people who feel empowered, engaged, and aware, which translates into action. That action, Wallach shared, is a gift to the entire [ALS] community. The commitment is to continue the conversation, making sure that people aren’t learning about ALS and this movement just once, on launch day.

 

“The question wasn’t ‘why should we act?,’ it was ‘why shouldn’t we act?’,” Wallach said. “You have to take something so big—where people feel like they can’t make a difference—and make people feel like they can be a part of the solution.”

 

Brian Wallach and Sandra Abrevaya met on the Obama campaign trail. When they reflected on how they could apply the engagement work they did with the Obama campaign, they thought, “if you are able to breakdown a fight like ALS into pieces, where everyone can find a piece that’s their speed,” you can really make a difference. People who have never been engaged with ALS before are more likely to join the fight because they have a chance to be a part of something where they can see their own impact. This is the strategy that I AM ALS will employ to achieve their goal of raising $100 million in research funding in three-years’ time.

 

“Selfishly, I would love to see a cure in my lifetime, but if that’s not going to be the case, I would like to know that we played a small part in changing the narrative,” said Wallach, when explaining his dedication to a cause that is much bigger than his personal fight.

 

I AM ALS proposes that if you give your effort, the narrative will change from “if there is a cure” to “when there is a cure.” Wallach is confident that when cures are found for ALS, it will unlock cures for other neurological diseases, like Parkinson’s, Alzheimer’s, and dementia.

 

The first step to join the movement is the simple act of raising your hand. Wallach and Abrevaya are asking that, today, we find one simple action to take to make an impact and follow the @iamalsorg movement on Twitter, Facebook, or Instagram.

 

“There is power in saying that the fact that I don’t know what’s coming next isn’t going to define me; what defines me is how I approach it. There are infinite possibilities, instead of dread. When I wake up in the morning, it’s about which possibility I am going to work toward that day.”

 

Wallach’s ask of you? “Don’t help us, join us.”

 

Here are some ways to take action today: 

FOLLOW @iamalsorg on Twitter, Facebook or Instagram

JOIN I AM ALS and stay up to date on the movement

TAKE ACTION and find simple things you can do today to make an impact

BUILD congressional champions by asking your Representative or Senator to join the ALS Caucus

GIVE to ALS research and help bring treatments and cures to the hands of patients

Vanessa M. Buenger is the director of marketing & content at Chicago Ideas. She is passionate about storytelling and the power it has to change the world.

Comments (2)

  • My daughter have been suffering from amyotrophic laterals sclerosis (ALS) disease for the last three years and she had constant pain, especially in her knees. And then the inability to eat without getting choked, strangled, and coughing. Thank God she have finally recovered after two months of taking a medication I feel so happy and excited to see my daughter recover from ALS very fast. you can ask for the doctor email if you need their help

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