I am DAWN BAXTER

Receiving the diagnosis of ALS was, obviously, life changing … however, what I would love to see changed is the messages we receive from the medical field from “get your affairs in order” to “how can we help you LIVE with ALS?” Life is not over, it just looks very different than what you may have planned.

As with most of my fellow PALS, my journey started with gait issues in Dec 2021. After seeing two chiropractors, orthopedic surgeon, rheumatologist, four EMGs, two MRIs of brain and spine, enough bloodwork to feed a small family of vampires :-), and five different neurologists did I finally get my diagnosis. I still remember my first words out of my mouth after hearing those words “you have ALS”, I said I will not live in a wheelchair. And here I am today, sitting in a wheelchair doing my best to educate and advocate.

I threw myself into the ALS world by doing as much research as I could; I entered the Healey F Trial; participating in TARGET, Beiwe app (iPhone), and ALS TDI ARC; I am a NEALS Research Ambassador; sit on a number of committees (ALS PCAC; IAMALS Community Outreach; IAMALS Tim Lowrey Panels; Barrow Patient Education; and NEALS OfficeHours project); and so grateful for the IAMALS weekly support group – it has, literally, been a lifeline for me.

Thank you for allowing me to share my story and thank you and the IAMALS team for all you do.