“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.”

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.”

Other Organizational Resources

HARK ALS

Hark is an organization founded by Donna Dourney York with family at it’s core. Donna and her 6 brothers and sisters journeyed through ALS together as they watched their father, Charlie “Hark” Dourney, courageously fight the disease until he lost his battle on November 2, 2009. HARK provides assistance to alleviate the financial burdens faced by families battling ALS.

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.”

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!

Live Like Lou

“Supporting families affected by ALS, funding ALS research to find treatments or cures for Lou Gehrig’s disease, and honoring Lou Gehrig’s legacy. In partnership with Lou Gehrig’s Fraternity, Phi Delta Theta, Live Like Lou has hundreds of volunteers throughout North America who have registered to serve ALS families in their community.”

Books

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.

The Theory of Everything 

Based on the story of Stephen Hawking, diagnosed with ALS/MND, winner of the Academy Award for Best Actor.

You’re Not You 

American drama starring Hilary Swank, a drama centered on a classical pianist who has been diagnosed with ALS and the brash college student who becomes her caregiver.

Luki and the Lights

Animated film geared toward children, but recommended parents/adults screen it first. Luki is a joyful robot living his best life when he starts to notice signs that parts of his body are malfunctioning. After a visit to the doctor, Luki is diagnosed with ALS/MND. Amidst his heart-wrenching challenge, he courageously confronts ALS/MND on his own terms with the support of his friends.

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.