Managing ALS as a patient or family caregiver can be overwhelming and difficult. We hope you find these resources for ALS patients and caregivers helpful.
Amyotrophic Lateral Sclerosis Association
800-782-4747
This nonprofit is focused on treating and curing ALS by supporting research, advocating, educating the public and more, while providing compassionate care and support to patients and their families. The website provides information on ALS symptoms, diagnosis, treatments, as well as the latest news and information. There is a national network of local chapters who provide educational materials and support groups. A call center provides information on ALS, advice on helpful products, assistance, insurance, caregiving responsibilities and more. Referrals for doctors are also provided. (800-782-4747; Monday – Friday, 7:30 am – 4:00 pm Pacific Time).
ALS Therapy Development Institute
This nonprofit organization is a drug discovery center focused solely on ALS. They are a nonprofit biotech who operates “without regard to profit motive or politics”. Led by people with ALS and drug development experts, they are funded by a global network of supporters unified to end ALS. the website provides information on ALS, an extensive list of clinical trials all over the world, and links to other organizations. You can also connect with other ALS patients and families.
CCALS – Compassionate Care ALS
This nonprofit supports people diagnosed with ALS, their families and communities as they navigate the physical and emotional challenges of ALS. The organization provides resources including equipment, educational workshops, Medicare/Medicaid assistance, guidance and awareness in living with ALS, caregiving, and end-of-life issues.
I AM ALS
This nonprofit organization, founded by ALS patient Brian Wallach and his wife, Sandra Abrevaya, empowers and mobilizes patients, engages with policy-makers and offers vital resources for people impacted by ALS.
Synapticure
Synapticure, founded by ALS patient Brian Wallach and his wife, Sandra Abrevaya, brings personalized care to ALS patients. Built by and for those living with ALS, alongside leading ALS clinicians, their mission is to transform care for all people living with ALS. For example, their care team partners with your clinician or they refer you to one of the ALS clinics they collaborate with in order to ensure that you receive the best care possible.
Your ALS Guide
This website provides a wide range of information for ALS patients and their caregivers. Topics include medical decisions, advance directives, home modifications, transportation, equipment, support groups, ALS clinics, and more.