This month, we honor some of our many dedicated volunteers. Today, we’re learning more about Jake Wentworth. Jake joined I AM ALS just last year after losing his mother, Becky, to ALS. Read on to learn more about Jake.

In what roles do you currently volunteer at I AM ALS? 

When I first started volunteering with I AM ALS in June 2024, it was just weeks after my mother passed away at the age of 59, after our courageous battle against Bulbar ALS. Losing her was devastating, but I knew I couldn’t walk away from the ALS community—I had to stay and fight for others still in the battle. Over the past few years, I had been involved in the Loved One Support group, where I met so many incredible I AM ALS staff and members who became my friends and my support system. 

Now, I have the honor of serving in multiple roles: I am part of the Community Outreach Team, Co-Chair of the New Community Fundraising Team, and a member of The Cure Collective. While I’m no longer a regular member of the Team Up for ALS group, I still jump in to help whenever needed.

This work isn’t just volunteering to me—it’s a way to honor my mother and continue the fight she could no longer carry.

How has volunteering with I AM ALS changed your life or the life of your family?

Volunteering with I AM ALS has helped me process my grief in ways I never expected. Losing my mom at just 31 years old felt unbearable, but through I AM ALS, I found a place where my pain could be turned into purpose. Before my mom passed, I AM ALS helped us in so many ways—pointing us toward equipment resources, grants, clinical trials, and anything that could give her a better quality of life. That kind of support is something I will always be grateful for, and now I get to be part of providing that same support to others. Grief doesn’t just disappear, but being part of this incredible team gives me strength. We are all here for a shared purpose—to help, to fight, and to find a cure. That purpose keeps me going. 

Why did you initially decide to get involved with I AM ALS as a volunteer?

In my mother’s final days, I made a promise to her—I told her I would never stop fighting for a cure. Even though ALS had stolen her voice for over two years, she found the strength to try and say, “I love you.” That moment is forever etched in my heart, and it’s what drives me every single day. I didn’t just lose my mom—I lost my best friend, my safe place, my world. But instead of letting grief consume me, I chose to channel it into action. Every day I volunteer is another day I fight for her and for every other family affected by ALS.

What would you tell others who are facing similar circumstances about what they could gain by volunteering with I AM ALS? 

To anyone navigating the heartbreak of ALS, I want you to know that you are not alone. Being part of this community means surrounding yourself with people who truly understand—who have walked this road or are walking it right now. Through I AM ALS, you will find support, encouragement, and a place where your pain is acknowledged but not in vain. You will feel valued, seen, and empowered. Whether you need someone to vent to, a team to stand with, or just a reason to keep moving forward, this community is here for you. Volunteering with I AM ALS has given me a purpose beyond my grief. It has given me a team, a mission, and a family. I promise, if you take that step, you won’t regret it.

Any other words of advice you’d like to share?

Always share your story. Always spread awareness. You never know who is out there feeling lost, just like we once did, desperately needing the support we were lucky to find. ALS took my mother, but it will not take my fight. And if we keep pushing forward together, we will make sure that one day, no family has to endure this pain.