This month, we honor some of our many dedicated volunteers. Today, we’re learning more about Gretchen Duffy, who cared for her mom when she was diagnosed with ALS until her death in 2019. Gretchen volunteers as a Peer Support Specialist with I AM ALS. Read more below!

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

I currently serve as a mentor through the Peer Support Initiative, and have previously spent time as a member of the Thank You Squad and the Legislative Affairs Team. I’ve also participated as a speaker for I AM ALS’ “Ask Me Anything” series (on “Caring for a Parent” and “Raising Kids While Impacted by ALS”), and was a panelist on the “Youth and ALS” panel for last year’s ALS Community Summit.

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

Being my mother’s caregiver was a profound honor, but it was also the most challenging thing I’ve ever done. Caregiving can feel helpless and isolating, and I firmly believe that one of the greatest antidotes to those feelings is finding community with others who have been in your shoes. I’ve met some of the most incredible people through my experiences volunteering in the ALS community, who have inspired me and given me hope and helped me cope with the loss of my mother and the life-changing experience of this disease. Volunteering with I AM ALS has allowed me to honor my mother’s memory by finding purpose and working towards positive change in ALS.

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

I lost my mother in 2019 after a year-long battle with ALS. Her passing left me feeling so shocked and so lost, and I knew I wanted to channel that somewhere. One of the first things I learned about I AM ALS was that they had a whole crew dedicated to sending handwritten thank-you notes. It sounds cheesy, but my mother was famous for her thank-you notes (the amount of fancy stationery I inherited after she passed was absurd!). So, I reached out about joining the Squad – and the more time I spent with the I AM ALS community, the more I wanted to help!

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

Volunteering with I AM ALS has been a really powerful way for me to turn pain into purpose, and find community with those who have this shared experience. You will be exposed to brilliant, kind, and dedicated people who are accomplishing incredible things, and it feels really good to be a part of that. 

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

Don’t be afraid to explore the different community teams if you’re not sure exactly where your time and talents are best spent! A legislative expert I was not, but the team welcomed me with open arms. All you need is the desire to roll your sleeves up – I AM ALS will support you the rest of the way.