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A Note From Our Board: I AM ALS Becomes a 501(c)(3) Organization

October 18, 2019  -  Louise Langheier

My name is Louise Langheier and I am honored to be the Board Chair of I AM ALS. I joined this movement the day Brian Wallach and Sandra Abrevaya told me their vision. For me and my husband Jay, they are two of our closest friends in the world and godparents to one of our sons. We love each other’s families. We want to grow old together.

Beyond their friendship, I believe deeply in what they are trying to do. I lost my Mom to a rare disease thirteen years ago. When she was diagnosed, I was devastated that no treatment was available. Unfortunately, the ALS story is similar. “We’re sorry; there is not much we can do.”

We believe the truth is that there is a lot we can do. It starts with empowering patients and those of us who love them to show up and fuel a cure. ALS and other rare diseases haven’t seen anything the likes of this community, 25,000 strong and growing, ready to make it happen. 

I know many of you visiting this site have someone you love affected by ALS, another rare disease, or a health issue. You show up here ready to support us and fight with us. We, the I AM ALS board and our full-time team, feel a huge responsibility to you to deliver on the I AM ALS vision. 

We built the I AM ALS board with patients, those who have been in the ALS fight for years, and new partners who will bring fresh and diverse perspectives to the work. So far this board includes 11 members: (i) Danielle Carnival, CEO of I AM ALS, (ii) Brian Wallach, co-founder of I AM ALS and attorney at Skadden, (iii) Sandra Abrevaya, co-founder of I AM ALS and CEO of Thrive, (iv) Jessie Rossman, attorney at ACLU of Massachusetts, (v) Edwin Cohen, founder and first CEO of Echoing Green Foundation, Inc., (vi) Daniel Tate, Jr., founding partner at Forbes Tate Partners and a person living with ALS, (vii) Clare Durrett, associate executive director at Team Gleason and managing coordinator at Answer ALS, (viii) Peter Bowen, partner at Bain & Company and a loved one of someone who battled ALS, (ix) Michael Slaby, chief strategist at Harmony Labs and previous chief innovation and integration officer for Obama for America, (x) Jano Cabrera, global chief communications officer at General Mills, and (xi) Myself, co-founder and CEO of Peer Health Exchange.

Today, on behalf of the I AM ALS board I am very excited to update you all that I AM ALS has been granted 501(c)(3) status by the IRS and is now a standalone nonprofit. 

We would like to thank the Les Turner ALS Foundation who has served as our fiscal sponsor the past 9 months. We are so grateful for their partnership that ensured we could continue making serious progress as we awaited this IRS status.

This new status will allow us to run faster and further as we help raise awareness and speed up progress, connect patients to critical resources, and flood the ALS research pipeline with new funding.

Sandy Morris, the President of the I AM ALS Community Advisory Council, says that we have to do this work on the ALS clock. In other words, we have to move at the speed of light to find a cure. We have to beat this thing. Just like Brian, Sandy is an inspiration to me, as are so many ALS patients and their families who wake up every day and move mountains in response to their illness. It is an honor to work to move mountains with them. And when we find a cure, we hope our patient-led model can help other diseases find theirs. 

Thank you so much for joining us. Let’s do this.


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