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Brooke Eby's Remarkable Journey in ALS Advocacy

On March 26, 2026, the ALS Network declared that Brooke Eby is the recipient of the Dean and Kathleen Rasmussen Advocate of the Year Award for 2026. This honor recognizes her exceptional efforts in championing awareness and support for individuals living with amyotrophic lateral sclerosis (ALS) while navigating her own battle with the disease. Eby has become a significant voice in the ALS community, mobilizing large audiences and reshaping public perceptions about the condition.

Brooke will be celebrated at the annual Champions for Cures and Care gala on June 20, 2026, in San Francisco, California. This event aims to unite families, corporate leaders, medical professionals, researchers, and supporters of the ALS community in a shared mission to advance the fight against ALS. In a heartfelt statement, Eby expressed her gratitude, stating, "I didn't choose ALS, but I did choose to get loud, and be irreverent about it. I'm not getting quiet anytime soon!" This reflects her unapologetic and vibrant approach to advocating for others living with ALS.

Known for her compelling writing, public speaking, and social media presence, Brooke has built a reputation for candidly sharing her experiences battling ALS with humor and resilience. After being diagnosed in March 2022, she began to document her life, revealing the joys and struggles of living with a terminal illness while maintaining a lively spirit. Her storytelling not only raises awareness about ALS, but also creates a strong sense of community among those facing similar challenges. Brooke emphasizes authenticity through vulnerability and wit, helping others feel connected and understood.

One of Eby's monumental contributions to ALS advocacy is founding the online community "ALStogether," employing a Slack platform to foster connection and share experiences among those affected by the disease. Earlier this year, ALStogether became integrated into the ALS Network's family of support, a strategic move designed to expand resources and connections for individuals living with ALS. Currently, this dynamic community has amassed over 1,700 members, serving as a strong peer-to-peer network filled with shared knowledge, emotional support, and a safe space for individuals managing the complexities of ALS.

Sheri Strahl, MPH, MBA, the president and CEO of the ALS Network, remarked on Brooke’s influence, stating, "Brooke embodies what it means to transform personal experience into purpose. With candid storytelling, wit, and courage, she is reshaping how the world understands ALS. We are honored to recognize her as our Advocate of the Year." This recognition speaks volumes about Brooke's impact not only within the ALS community but also in the broader public arena.

In addition to her advocacy work, Brooke has remarkably raised over $1 million for ALS research through various initiatives. Her enthusiasm, engaging humor, and earnest dedication to making a difference resonate deeply with anyone who encounters her narrative. By sharing her experiences with mobility devices, clothing adaptations, and family dynamics, she offers her audience an honest view of living with ALS, breaking down barriers and dispelling misconceptions about the disease.

The event honoring Brooke also provides opportunities for sponsorship, ticket purchases, donations, and advertisements, emphasizing collective action within the ALS community. Individuals who wish to contribute and celebrate Brooke's remarkable achievements can find further information at alschampions.org.

Through her journey, Brooke Eby stands as a testament to the power of advocacy, resilience, and community. Her remarkable transformation from a patient to a celebrated advocate shines a light on the importance of raising awareness for ALS. The ALS Network's recognition of her contributions underscores a message that despite personal challenges, one can emerge as a beacon of hope and inspiration for many.

For more information on ALS and the work of the ALS Network, visit alsnetwork.org or connect with them on social media at @yourALSnetwork.