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Community Advisory Council: Leaders in the Fight

May 7, 2019  -  Brian, Cathy, and Sandy

The first thing you need to know about ALS is that it forces you to accept a lot of things that you cannot change. The second thing you need to know is that not having a cure is not one of those things. It is within our power to make a cure real.

Making a cure real takes courage from the men and women living with ALS, their families, the communities, their medical teams, and all those who have loved and lost someone to this disease.

This, however, is not a post about finding a cure. It is a post about the community that will help find that cure. It is a post about our dream. An audacious, multi-part dream:

What if every patient living with ALS who wanted to could participate in a clinical trial?

What if every drug company was able to make all of their drugs available to terminally ill patients?

What if the government helped seed innovation and exploration and eliminated duplication?

What if every data set generated through ALS research was shared freely and completely?

What if we found a way to explain to the world that ALS can affect everyone and that curing it takes everyone?

What if we paid tribute to those who have died from ALS and those who walked with them by organizing the ALS community to change the course of this fight?

What if we stopped dreaming of a cure and came together to bring it about?

Would we have a cure for ALS then?

Do you want to find out?

We do. So we have come together as the I AM ALS Community Advisory Council. We are patients, caregivers, advocates, and beyond. We meet every week to talk about our hopes and our dreams. Our plans for I AM ALS and how we can augment the amazing work going on in every corner of our fight.

Since our first meeting in August 2018 to today, we have grown from 5 to 25 members. As we grew, we realized that one group wasn’t enough. There was too much work to do. So we set up three more committees: (1) Community Outreach; (2) Clinical Trials; and (3) Legislative Advocacy.  And then we rolled up our sleeves and began learning, building and fighting. Because we don’t have time to waste.

We are you--your brothers, sisters, mothers, fathers, sons, daughters, neighbors and friends. We will fight for you every day. We promise that.

We also promise that we will make public our efforts so you can see what we are doing and help us do it better. We also promise that we will not rest until we have a cure. We may stumble along the way, but we will always get back up. Alway push forward. Because we are absolutely Better Together.  

We can and will defeat this thing. Check back here and on the other committee blogs (legislative affairs, clinical trials, and community outreach) for regular updates. And when you do, email us at [email protected] to let us know your thoughts, to push us and to make sure your voice is heard.

Thank you for being amazing. Thank you for daring to do something great.

Thank you for helping us make a cure real.

Sincerely,

Brian Wallach
Sandy Morris
Brian Andre
Lori Andre
Deb Bellina
Matt Bellina
Alison Burell
Cory Burell
Nicole Cimbura
Mike Cimbura
Cathy Collet
Mara Dolan
Pat Dolan
Brian Wayne Galentine
Phil Green
Chuck Haberstroh
Steve Haberstroh
Shea Harden
Shelly Hoover
Greg Kenoyer
Donna McArthur
Tim McDaniel
Juan Reyes
Adam Smith
Jay Smith
Christa Thompson

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