In memory of Matt Toole

someone we've lost to ALS


**Matt passed away on March 29, 2022. Below is his story in his own words.**


1993 – B.S. Engineering Technology (Mechanical) Southern Illinois University (Carbondale)
2003 – M.S. Engineering, Purdue University (Hammond)


I am 51 years old living with ALS. My ALS started when first having left arm weakness in the Fall of 2009. I receive my care from the Les Turner ALS Foundation ALS Center at Northwestern Medicine in Chicago. I am a NEALS ALS-CRLI certified ALS Research Ambassador.

Living with ALS for so long has given me the opportunity to navigate the many challenges and changes associated with the progression of ALS. With my wife Karen and children Regan (19) and Paddy (18), we have been able to adapt to the daily battles we face while living with ALS and try to keep life as normal as possible.

I have seen many others go through their journey with ALS. I am involved in ALS efforts by participating in the NEALS PEACe committee meetings, patient advisory boards, ALS support group meetings, online discussion forums, webinars/events and try to participate in as many ALS advocacy/outreach activities as possible. Participating in these opportunities allows me to gain a perspective on the greater ALS/CALS community. I am motivated to help advance ALS research to hopefully one day be able to say I had ALS. I believe there is progress to be made in understanding the science of ALS and opportunities to improve the research process for development of ALS therapies.

Professionally, prior to my career being cut short by ALS, I was a manager and part of the leadership team at Sargent & Lundy (S&L) in Chicago. S&L is annually ranked a top engineering design firm in the power industry by Engineering News Record. I led a team of mechanical engineers that produced quality deliverables for multi-discipline projects at nuclear power plants. I am a registered Professional Engineer in the state of Indiana. My responsibility is to ensure the health and safety of the public.

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