Online ALS Advocacy Group Founder Leah Stavenhagen Dies at 33, Nearly 7 Years After Her Terminal Diagnosis
Yahoo News New Zealand • • health
Key Points:
- Leah Stavenhagen, advocate and founder of the nonprofit Her ALS Story, has died at age 33, nearly seven years after her ALS diagnosis and five years after launching the organization.
- Her ALS Story focuses on young women diagnosed with ALS before age 35, challenging the misconception that ALS primarily affects older white men.
- The nonprofit creates a supportive community for young women living with ALS, offering connection, education, and an annual retreat for members and their families.
- Stavenhagen founded the organization after recognizing a lack of attention on younger ALS patients, especially women, and aimed to share their similar experiences and struggles.
- ALS is a terminal neurodegenerative disease with no cure, typically leading to death within three
