ALS is a devastating disease for both the people living with it and their loved ones.
Joel was diagnosed in 2019. As the disease progressed, it became harder for my husband, Joel, to do things on his own. As a wife and caregiver, I became stressed, anxious, and depressed.
The ALS United Rocky Mountains’ support group became a lifeline for me. They provided resources for equipment, referrals to vendors, guidance for caring for Joel, and a shoulder to cry on.
Refusing to be a victim, we chose to be an advocate by helping fund the ALS United Rocky Mountain’s Quality of Life Grant.
In addition, Joel wanted to leave a legacy by helping develop a resource that would make life easier for caregivers and people affected by this disease. Working with the Your ALS Guide team, we helped write, fund, and develop The Joel Goldhirsh ALS Home and Daily Living Guide. This guide aims to help people living with ALS improve their everyday quality of life and to empower both family and paid caregivers with the knowledge, skills, and resources needed to provide the best possible care.
Joel passed away on March 16, 2024. He is sorely missed by me, his wife of 40 years, his daughters, his sons-in-law, and his four grandchildren. As a family, we continue to support ALS United Rocky Mountain by sponsoring the Gala and the Denver Walk.
Due to health reasons, I moved to New Jersey in late October 2025 to live with my oldest daughter, son-in-law, and three grandchildren. I am honored to remain on the board and will continue to support from afar.
Though Joel is no longer physically with us, his legacy lives on in every life touched by the guide he helped create and the community he helped strengthen. Our family’s journey with ALS has shown us the power of support, the importance of resources, and the impact of advocacy. We remain committed to continuing this work, not just in Joel’s memory, but for every family navigating ALS today. Together, we carry forward his vision of compassion, dignity, and hope.