Faces of ALS: From caregiver to advocate

Ashley RosenbrockFaces of ALS, Home Page

Tyler Gaetano’s mother Vera, a Navy veteran, worked in the research department at the VA Hospital in West Haven, CT. Because she had been experiencing slurring of her speech, she decided to seek medical advice. Due to her history of blood issues, the doctors suspected blood cancer, so she was prescribed chemotherapy and given plasma infusions. After these treatments proved ineffective and Vera began to develop issues with swallowing, she was diagnosed with bulbar ALS.

“It was shocking when she was diagnosed, coupled with the fact that she had the ‘expedited version’ of ALS,” says Tyler, who was his mom’s primary caregiver. “No one suspected that my mom had ALS. She did, however, know that something was off since she was very in tune with her body.”

Vera passed away in July 2021. Having stepped away from his career in sports marketing, Tyler knew that he wanted to get involved in ALS advocacy.

“I connected with Lauren Webb from the Les Turner ALS Foundation after her presentation at the International Alliance for ALS/MND Associations annual conference in 2021,” says Tyler. “She asked if I could provide feedback on things like the My ALS Decision Tool™ and caregiving guides. We’ve been in touch ever since.”

“Tyler’s insights are helping us empower people living with ALS and caregivers with interactive tools to manage and simplify difficult decisions,” says Lauren Webb, LCSW, Director of Support Services and Education. “We’re grateful to have his input. Advocates who understand the ALS experience can bring valuable perspective to the development of our educational resources, speaking engagements, interviews, legislative outreach, or serve on ALS committees or boards.”

In addition to assisting the Foundation, Tyler has been busy with other ALS advocacy work.

“I worked with the Department of Defense this year on their Congressionally Directed Medical Research Programs as a consumer reviewer, where I provided perspective and insight on various early-stage ALS research projects,” says Tyler. “This program is the first step in helping the DoD determine which researchers and projects to fund in their ALS Research Program. In November, I was also a part of the Northeast ALS Consortium’s (NEALS) Clinical Research Learning Institute Ambassador Program. Currently, I’m a part of a stakeholder group for the National ALS Registry to provide community perspective and enhance utility for people living with ALS.”

Tyler doesn’t know what lies ahead in his career, but he plans to continue advocating for others who are going through a similar situation.

“Someone has to lay a path. It wasn’t clear to me how to get through the ALS journey as a caregiver of someone living with ALS,” says Tyler. “I want to help people find the best tools, give them a roadmap on how to approach ALS, and help them better understand what they and their loved ones are going through. I just know now that I have a strong desire to do something that matters at the end of the day.”

During this season of giving, please consider making a donation to show your support for people like Tyler and his family or in honor of a loved one who you know is living or lived with ALS.