Rob Faulstich’s advocacy journey began when his sister-in-law, Diane Costello, was diagnosed with ALS in late 2018.
“Prior to Diane’s diagnosis, she had difficulty walking and was tripping frequently going up stairs and curbs,” says Rob. “When she sought treatment and answers, she went through the normal process of diagnosis by exclusion that ALS patients must often endure before hearing the devastating news that she has an incurable fatal disease that will gradually rob her of her ability to move, speak, and ultimately breathe.”
Diane began working under the care of neuromuscular physician-scientist Colin Franz, MD, PhD. Through Dr. Franz, the team at Shirley Ryan AbilityLab, and the Les Turner ALS Center at Northwestern Medicine, Diane and her family became familiar with the resources and the comprehensive coordination of care that patients and their families get through the Les Turner ALS Foundation.
Because of Rob’s career in the pharmaceutical industry, the family reached out to him to help with understanding the potential treatments for her disease.
“I had worked in many therapeutic areas, but ALS was not one of them, so I started researching the disease,” says Rob. “I looked at all types of treatments available at that time including clinical trials and alternative treatments. It quickly became clear that there was a paucity of available treatments for ALS and very little on the near-term horizon.”
From Rob’s perspective, the options for ALS patients were very limited several years ago and the disease was under appreciated by decision makers at the national level. Rob felt little hope for Diane as he watched her ALS progress. He couldn’t help but imagine the thousands of people living with ALS, and those who are yet to be diagnosed, facing the same experience as Diane. So, once Rob retired in late 2019, he decided to use some of his newfound free time for ALS advocacy.
When the COVID pandemic hit in 2020, Diane’s family lost precious time with her. 
“Diane worried that COVID would be fatal, given her increasing breathing difficulty, so she and her husband Mike justifiably all but eliminated contact with the outside world,” explains Rob. “They stopped traveling. Family get-togethers consisted of Mike and Diane staying inside the house, while everyone else was outside.”
Adds Rob, “When we started to get out of the house again and gradually returned to our usual routine, we realized that time with Diane was lost. Everyone felt robbed of time with her, but they did everything they could to make up for it. This included a large outdoor 70th birthday party for Diane – a final celebration with family before she passed in July of 2021.”
“Toward the end of Diane’s ALS journey, I asked her how I should direct my advocacy. Her response was, ‘Find a cure.’” says Rob. “I want to continue to be a part of this community until the work is done.”
The Foundation provided several opportunities to help Rob launch his advocacy work. He became a Research Ambassador through the Foundation-sponsored NEALS Clinical Research Learning Institute, and Lauren Webb, LCSW, Director of Support Services and Education, wrote a letter of recommendation for Rob to join a panel reviewing ALS research grant proposals for the Department of Defense’s Congressionally Directed Medical Research Program.
“The ALS community needs everyone’s help,” says Rob. “Whether by raising funds, raising awareness, raising your voice in advocacy, or raising the spirits of someone impacted by this disease, the most amazing part is that getting involved will raise you up as well.”
We are grateful to Rob and the thousands of other advocates in the ALS community. Please consider making a contribution to support ALS advocates like Rob, who play a vital role in advancing ALS awareness, research funding, and getting us closer to a world free of ALS.
