The ALS Hope Foundation has generated this list to help people with ALS, their caregivers, and family members to pursue information, research, news, and community. These links are checked on a regular basis, but please email us at firstname.lastname@example.org if any are inoperable.
ALS Hope Foundation Educational Video Series
Current entries in the series:
Guides For Daily Living From The Center Of Hope Staff
Adaptive Solutions to Maintain Independence Mark Goren, MS, OTR/L, CHT
Emergency Preparedness Guidelines for People with ALS and Their Families Alisa Brownlee, ATP, Sara Feldman, DPT, ATP, Latoya Weaver, PSC
Symptom Management for PALS MDA/ALS Center of Hope Team
Tips for Holiday Eating Marcie Amerstein, RD, LDN
Coping With Holiday Stress Mary Paolone, MSRN
Communities And Forums For PALS
The ALS support forum is an all-volunteer driven resource provided free of charge to help anyone directly or indirectly affected by ALS and MND (also known as Lou Gehrig's disease).
The International Alliance of ALS/MND Associations was founded in 1992 to provide an international community for individual ALS associations from around the world. Their vision is to engage with our members and other organizations to share resources globally, advance awareness, and support PALS worldwide. Their Directory includes contact information for associations in more than 30 countries.
PatientsLikeMe is committed to putting patients first. We do this by providing a better, more effective way for you to share your real-world health experiences in order to help yourself, other patients like you and organizations that focus on your conditions.
Other Resources For PALS And Families
Hope Loves Company is the only nonprofit in the US with the unique mission to provide both emotional and educational support to children and young adults who have or have had a loved one battling ALS or Lou Gehrig's disease. They provide Camp HLC, a 3-day weekend retreat where campers enjoy recreational activities while learning coping skills and receiving peer support; Hugs of Hope care packages which include a Camp HLC t-shirt, children's book, stuffed animal, and signed card from the HLC team; Family Fun Days; educational materials and resources; and more. All of their programs and resources are provided at no cost to families affected by ALS. Visit www.hopelovescompany.org or call the HLC office at 609-730-1144 to learn more!
Jodi O'Donnell-Ames of Hope Loves Company teamed up with Dr. Terry Heiman-Patterson and the clinic team at the MDA/ALS Center of Hope, along with other experts, to edit and write Someone I Love Has ALS: A Family Caregiver Guide. The book features chapters with useful information on caregiving, advocacy, services, equipment, and navigating the healthcare system by Dr. Terry Heiman-Patterson, Sara Feldman, LaToya Weaver, and more.
Dr Eliot Dunsky was diagnosed with ALS in 2009. Determined to maintain the best quality of life possible—for as long as possible—he extensively researched the condition and its management. ALS: An Orientation offers a practical guide for patients and their families on maximizing quality of life through strategic care and, importantly, coping with the emotional toll the disease can take. A terminal diagnosis simply means savoring to the fullest the life that is still possible.
Movies And Documentaries
Scottish documentary and winner of a British Academy Scotland Award for Best Director.
Based on the story of Stephen Hawking, winner of the Academy Award for Best Actor.
American drama starring Hilary Swank.
Please note: These links are simply meant to be a helpful resource and a starting point! The ALS Hope Foundation has not evaluated and does not maintain the information contained on the sites mentioned here.