Advocate for ALS patients, including herself, recognized for work
Writer/speaker/social media creator named ALS Network's Advocate of the Year
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- Brooke Eby, a writer, speaker, and social media creator who lives with ALS, has been named ALS Network's Advocate of the Year.
- Through her advocacy work, Eby has increased awareness and raised more than $1 million for ALS research.
- Eby created ALStogether, an online support community for people living with the progressive disease.
Brooke Eby, who was diagnosed with amyotrophic lateral sclerosis (ALS) in 2022 at age 33, has been named the ALS Network’s 2026 Dean and Kathleen Rasmussen Advocate of the Year for turning her personal experience as an ALS patient into a platform for advocacy, community building, and awareness.
The U.S.-based nonprofit announced Eby as this year’s award winner, recognizing her wide-ranging advocacy efforts, which include raising more than $1 million for ALS research and building an online support networks. Eby shares her experiences in living with ALS to help others better understand life with the disease, the advocacy organization noted.
“Brooke embodies what it means to transform personal experience into purpose,” Sheri Strahl, president and CEO of the ALS Network, said in a press release announcing the award. “With candid storytelling, wit, and courage, she is reshaping how the world understands ALS. We are honored to recognize Brooke as our Advocate of the Year.”
A writer, speaker, and social media creator, Eby began documenting her daily life after her diagnosis, offering an unfiltered look at the realities of living with ALS. Her posts, often marked by humor and honesty, have resonated with a broad audience and helped make conversations around the disease more accessible, according to the ALS Network.
Award recipient created ALStogether for real time patient support
The nonprofit said Eby’s work has made her one of the most visible advocates in ALS today — she notes she’s also one of the loudest.
“I didn’t choose ALS, but I did choose to get loud, and be irreverent about it, so don’t worry, I’m not getting quiet anytime soon! I’m so grateful for this award because it tells me I’m helping in my own weird way,” Eby said.
Eby also launched ALStogether, now part of the ALS Network. ALStogether is an online support community hosted on the messaging platform Slack where people with ALS can ask questions, share advice, and find emotional support in real time.
Today, the community has more than 1,700 members. Together, patients and families now connect with healthcare professionals and researchers to find ways to prevent, treat, and, hopefully, one day cure ALS. This partnership also aims to help more people affected by the disease to access resources and connect with others.
I didn’t choose ALS, but I did choose to get loud, and be irreverent about it, so don’t worry, I’m not getting quiet anytime soon! I’m so grateful for this award because it tells me I’m helping in my own weird way.
Eby will be honored at the Champions for Cures and Care gala, which will be hosted by the ALS Network on June 20 at the Hyatt Regency Embarcadero in San Francisco.
To help honor Eby and support the ALS community, advocates can go to the ALS Champions website to explore sponsorships, tickets, donations, and advertising opportunities.
