In April, we honor some of our amazing, dedicated volunteers. Today, we’re learning more about Katie Brownlee. Katie joined I AM ALS after her dad Joe was diagnosed with the disease. Read on for more about why Katie got involved with I AM ALS and what her involvement gives back to her.
In what roles do you currently volunteer at I AM ALS? (Please include all roles, if you have multiple!)
I serve as a co-chair with the amazing Jacob Wentworth on the Community Fundraising Team. I initially joined the Veterans team, but realized my skill set could be better utilized in a fundraising group so we started one! I’ve been a career fundraiser for almost 20 years and love helping people share more about I AM ALS’s impact and invite their community to support the mission if they’re interested and able.
How has volunteering with I AM ALS changed your life or the life of your family?
I have met the most incredible people through I AM ALS. I learned about support groups, clinical trials, research, legislative advocacy, and how to personally advocate for my dad who was a military veteran with ALS. This community is the most supportive and caring group of people who help each other navigate all the change and uncertainty that happens while caring for someone living with ALS.
Why did you initially decide to get involved with I AM ALS as a volunteer?
I first saw a segment on CBS Sunday Morning called “Fighting the good fight against ALS” in November 2023 that showed Brian Wallach and Sandra Abrevaya’s incredible efforts to give ALS patients a voice in their own care. It was ironically one month before my dad was diagnosed with ALS. The minute my dad was diagnosed, I knew I wanted to get involved with this incredible organization. The guide for military veterans navigating this disease was instrumental in our family establishing care and navigating the VA process. We knew immediately what to do to support him. Supporting a family member with ALS is daunting and often feels hopeless.
This group gave me hope that we can take incremental steps to help those living with it to amplify their voices and make sure they are heard.
What would you tell others who are facing similar circumstances about what they could gain by volunteering with I AM ALS?
I would tell them that they will find the most supportive group of people. Whether you are a caregiver, a loved one supporting someone living with it, or a random person who learned about ALS and wants to help, there is something for everyone to do. My goal is for ALS to become a household name that everyone knows so they feel compelled to advocate for those living with this disease. While I can’t promise that there will be a cure in my lifetime, I am confident that thanks to I AM ALS, we will continue to do everything possible to make sure those living with ALS have a voice in their care and advocacy efforts. We will listen, support them, and do everything we can to help them.
Navigating this disease can be daunting and heart breaking, but building a community with the incredible I AM ALS volunteers and staff, helps make it feel less overwhelming and provides a great group of people to build camaraderie and support.
