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Community Outreach Committee: Connecting the Dots

May 7, 2019  -  Steve Haberstroh

This is me with my mom, Patty Haberstroh this past summer.  She was diagnosed with ALS in the fall of 2017, roughly nine months after her first symptoms. Our lives would forever be changed; not over, just changed.

Mom is a fighter.  She always has been.  As a child, she was told she wouldn’t go to college because, well, “girls didn’t really do that back then.”  She graduated from Smith College in 1971. She took a job at Chemical Bank at a time when “women just didn’t work in finance” and required equal pay, paving the way for all the women that would follow in her footsteps.  My father fondly tells me that when Mom decided to be a full-time mom, she was making more than him (he was also a banker).

Upon her diagnosis, she told us we were going to fight.  Not just for her but for the hundreds of thousands of warriors battling the disease.  So we did what we have always done (sort of) and obeyed our mother.

We got to work. We created the ALS Pepper Challenge raising $640,000 to go towards ALS research through ALS TDI, brought hundreds of new advocates into this fight, and started connecting with anyone we could who would help us in this fight.

One of those people was Brian Wallach.  We spoke on the phone for hours over many weeks sharing frustrations and visions for a world without ALS.  It became clear that the only way to beat this thing was to bring everyone together. Fight as a family. Just like mom taught us.

So when Brian founded I AM ALS and asked my brother Chuck and me to co-chair the community outreach committee, we were honored.  

Our committee of 15 or so patients (pALS) and caregivers (cALS) strives to bring the ALS community together to work as one force and provide valuable resources to patients and their families. We all hit the ground running late last year and in a few short months we have:

  • Developed an FAQ page for iamals.org (to be published shortly).
  • Originated by Greg Kenoyer and assisted by Juan Reyes, built a Protocol for EMS and first responders who respond to a call to treat someone with ALS.  
  • Are developing a “Common Application” for grant requests across multiple organizations.  Imagine visiting iamals.org, filling out one electronic grant application and sending to multiple organizations with one click.  It’s coming soon.
  • Are personally contacting over 30 ALS organizations each week to learn more about what they are doing and connecting them to those who can help with their mission.
  • Are developing a National ALS Events calendar on iamals.org where folks can see all the wonderful events being hosted nationwide by countless ALS organizations.
  • Built a team to personally respond to emails, Facebook messages, Twitter direct messages, etc. that come into our group.
  • Cried, laughed and supported each other. Every day.

And the best part, we’re just getting started.  This fight won’t be easy. But, hey, I come from a long line of fighters. So that’s what we are going to do. Fight and dream every day until we have a cure.

If this sounds like your kind of group and you would like to join the movement, please reach out to us via [email protected]  Title your email Community Outreach and let us know you are ready to fight too.

Here’s to this community. We are better together. We will win this fight together.

Steve

I AM ALS Community Outreach Committee Members

  • Steve Haberstroh
  • Chuck Haberstroh
  • Adam Wilson
  • Deb Paust
  • Donna McArthur
  • Greg Kenoyer
  • Mandi Bailey
  • Phil Green
  • Ryan Tofteland
  • Sandy Morris
  • Cathy Collet
  • Larry Friedman
  • Sean Command
  • Lorri Carey
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