‘I Am ALS’ Campaign for Better Resources Gains Obama Foundation Support

‘I Am ALS’ Campaign for Better Resources Gains Obama Foundation Support

As part of a series of profiles of people doing great things for their communities, the Obama Foundation has released a video spotlighting the efforts of a patient and his wife who want to reimagine the fight against amyotrophic lateral sclerosis (ALS).

The Chicago couple, Brian Wallach and Sandra Abrevaya, founded a patient-led campaign this year called I AM ALS, which brings together patients, advocates, organizations, and researchers to drive collaboration, provide critical resources, and increase disease awareness with the ultimate aim of funding a cure.

Following its recent release, the video was viewed more than 1 million times in less than 24 hours. Former President Barack Obama tweeted about the video and the movement. During Obama’s 2008 campaign, Wallach was a political director and Abrevaya  a communications director. They dated then married.

Then in 2017, when Wallach was 37, he got the devastating news: ALS. At the time, the couple had two daughters under age 3.

“Most people who get ALS, the average lifespan is two-to-five years,” Wallach, a former U.S. attorney, says in the video. “So, you don’t become an advocate because you’re simply consumed by trying to live your day-in-day-out life by trying to deal with the changes that confront you every day.

“And so our thought was, what if we could build something that would help give everyone in this fight that little bit of mental space so they could actually be empowered to help us accelerate this fight to the natural conclusion that we all want.”

After coming to terms with the diagnosis and vowing to fight back, the couple couldn’t understand why the disease wasn’t better funded or understood. They decided to create a patient-centric movement and research-funding model that could be used for all rare diseases.

“We are just like we were back in ’08, back in campaign mode,”  Abrevaya, president and chief impact officer at Thrive Chicago, says in the video. “We spend our date nights editing website copy and coming up with awareness strategies.”

The two are using what they learned on the campaign trail, including how to organize. They enlisted the help of friends, many of them veterans from both sides of the political aisle, to help craft a plan that incorporates campaign tactics.

“The group of people we brought together have stood by us from the beginning,” Wallach said in a news release. “They have been there to augment our ideas and challenge the basic assumption that we can do things only one way. They are a reminder to me that the Obama ethos is what truly inspired us to begin this journey.”

Now in its fifth month, I AM ALS has grown to a community of 16,000. It also has helped garner $10 million in federal funding for ALS research, and raised more than $1 million in seed funding. It has created scientific and patient advisory councils, brought in multiple industry partners, and established relationships with patient advocates in ALS and other diseases. The expectation is that curing ALS will lead to cures for other disorders.

But for Wallach and Abrevaya, first things first.

“I fight for myself, my husband, our girls,” Abrevaya said. “I want a world where good triumphs over evil, where impossible just means it hasn’t been done yet. This campaign is about building a movement to change the world.”

6 comments

  1. dianne barret says:

    i’m the mum of my 36year old son who has been diagnosed with this devil disease. I am English and my husband French and we live in France with our family of two daughters and our son. Between them they have given us 5 beautiful granddaughters. The uplifting chapter concerning the two people who worked on President Obama’s election has turned my afternoon into sunshine. I was soooo happy when Barak Obama was elected and just love the man (and his wife)! so i shall be following this very closely and have great faith in the researches working for a cure. we need it in the immediate future. so please pour in MORE MONEY as in France and the rest of the world we are all raising as much money as possible by competing in races or organising sales etc etc. Governments must give MORE;

  2. Susan Jaworski says:

    Susan Jaworski

    Yesterday marked 1 year since diagnose. After months of testing which what I thought was a botched knee replacement I was told I had ALS at the Mayo Clinic in Rochester MN. I live in the Northern suburbs of Illinois. Yesterday on the anniversary my husband and I spent it at Northwestern ALS Clinic Chicago. We are still trying to wrap our heads around this devastating diagnose. I am a 62yr old retired flight attendant with American Airlines. I flew for 40 years and was forced to retire since I can no longer balance or walk safely without assistance. It seems so hard to believe that a cure has not been found yet. This is one complicated disease where everyone reacts and progresses differently without any rhyme or reason. Thank you Brian and Sandra for opening doors, and discussions, and funding, and hope for a cure. I am ALS!
    Count me IN with your Movement!

  3. Per says:

    My name is Per. I live in Sweden. Here the reserge lives on schraps. The communication is zero. The disese is al to rare, to ber taken serusly. The pations substans is to small. Maby in 10 yaers but not in the near future.

  4. Clare Crawley says:

    Great to read – pushing to get the attention on this devastating disease is so important .When you think of the resources that go into cancer ………

  5. Natalie Huppee says:

    I too have just passed the one year mark with ALS. Luckily it only took a few months for Mayo in Jacksonville to diagnose me. I think I cried all the way back to southwest Florida that day. I haven’t had much progression at this point. It is still just my right leg that is involved. I too thought that my problems were from a knee replacement but my ortho dr sent me to a neurologist here and he then sent me to Mayo. I am using a power wheelchair because of numerous falls and broken bones. Hopefully, ALS will soon get the attention of more government officials who in turn will support research at a higher level. My husband and I attend a clinic in Tampa at USF and also a community support group in Naples, Fl. The attendees have given us so much support in this journey that I don’t know how we would be doing without them. Prayers for all going through this horrible disease.

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