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 info@alshopefoundation.org if any are inoperable.

Educational Video Series

Visit the YouTube playlist

• ALS 101: The Basics

• 2022 Philadelphia Virtual Clinical Research Learning Institute (CRLI) Videos

• 2022 Philadelphia Virtual Clinical Research Learning Institute (CRLI) Program Booklet

• Computer Access Using a Mac in ALS

• Constipation in ALS

• Hand Therapy Exercises in ALS

• Invasive Ventilation in ALS

• Leg Range of Motion in a Wheelchair for ALS

• Living with a Feeding (PEG) Tube

• MDA and ALS

• Nebulized Medication in ALS

• Non-Invasive Ventilation in ALS

• Nutrition in ALS

• PEG Tubes in ALS

• Pulmonary Clearance in ALS

• Pulmonary Function Test in ALS

• Seated Leg Exercises in ALS

• Speaking Difficulties in ALS

• Splinting in ALS

• Swallowing Difficulties in ALS

Guides For Daily Living from Our 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 & Forums For PALS

I AM ALS

“A patient-led, patient-centric movement that will drive collaboration, build and provide critical missing resources for the ALS community, organize and empower the ALS community, and drive increased awareness of ALS in order to generate millions of dollars in new funding to accelerate finding a cure.”

ALS Forums

“The ALS support forum is an all-volunteer driven resource provided free of charge to help anyone directly or indirectly affected by ALS/MND.”

Your ALS Guide

“We hope this website will help answer your questions, connect you to resources, save you money, expand your support network, and generally make life with ALS a little easier.”

International Alliance of ALS/MND Associations

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 members to share resources globally, advance awareness, and support PALS worldwide. Their Directory includes contact information for  associations in more than 30 countries.

Patients Like Me

“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

“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.” 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!

Someone I Love Has ALS: A Family Caregiver Guide

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 Mary Holt-Paolone.

ALS: An Orientation by Eliot Dunsky, MD

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

Gleason

After he is diagnosed with ALS, former professional football player Steve Gleason begins making a video diary for his unborn son, as he, his wife, and their friends and family work to raise money for ALS patients as his disease progresses.

I Am Breathing 

Scottish documentary and winner of a British Academy Scotland Award for Best Director.

The Theory of Everything 

Based on the story of Stephen Hawking, winner of the Academy Award for Best Actor.

You’re Not You 

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.