ALS
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It leads to the gradual loss of muscle control, causing difficulty with speaking, swallowing, and eventually breathing. While the mind typically remains sharp, the body becomes increasingly paralyzed. There is currently no cure, and the exact cause is often unknown, though some cases are inherited.
Maine Resources
MaineHealth - ALS Specialty Care Brunswick - Recognized Treatment Center offering comprehensive evaluation and treatment by specialists in neurology, nursing, physical therapy, occupational therapy, speech therapy, respiratory therapy, nutrition, and social work, with ongoing support from the ALS Association.
Maine State Advocacy – The ALS Association - Advocates in Maine working to inform legislators about the needs of the ALS community, striving to improve policies and support systems. Engaging in advocacy can lead to meaningful changes that benefit patients, families, and caregivers.
MaineHealth ALS Patient Assistance Fund - Offers financial support for expenses like hotel stays, gas cards, meals, and unreimbursed medical supplies to assist ALS patients and their families.
Walk to Defeat ALS – Maine (Portland) - Scheduled for Sunday, October 5, 2025, this event raises funds and awareness for ALS research and support services. For more information or assistance, you can contact the ALS Association's Northern New England Chapter at 866-257-6663.
Regional Resources
The ALS Association - Northern New England - Serves the needs of those living with ALS and their caregivers in Maine, New Hampshire, and Vermont, providing support and resources.
Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) -
A collaborative network of ALS specialists focused on research and clinical trials to find effective treatments for ALS.
Compassionate Care ALS - Provides equipment, educational workshops, and guidance to individuals living with ALS, as well as support for caregivers.
ALS Therapy Development Institute - A nonprofit biotechnology organization dedicated to developing effective treatments for ALS through innovative research. They host events around New England.
National Resources
Muscular Dystrophy Association (MDA) - The MDA is an American nonprofit organization dedicated to supporting people living with muscular dystrophy, ALS, and related neuromuscular diseases. They provide patient services, fund research, and advocate for individuals affected by these conditions.
I AM ALS - Offers advocacy opportunities, virtual support groups, and ongoing emotional support and logistical guidance for families impacted by ALS. They aim to empower patients and caregivers through community-driven initiatives.
Les Turner ALS Foundation - Founded in 1977, the Les Turner ALS Foundation is one of the longest-serving ALS groups in the country. Their support services team helps people living with ALS, and they offer free ALS support groups online.
Hope Loves Company - A nonprofit organization offering free programs for children and grandchildren of ALS patients, including Camp HLC, care packages, and educational resources.