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 is inoperable.
ALS Hope Foundation Educational Video Series
Current entries in the series:
- Computer Access Using a Mac in ALS
- Constipation in ALS
- Invasive Ventilation in ALS
- 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 The Center Of Hope Staff
Mark Goren, MS, OTR/L, CHT
Alisa Brownlee, ATP, Sara Feldman, DPT, ATP, Latoya Weaver, PSC
MDA/ALS Center of Hope Clinic Team
Marcie Amerstein, RD, LDN
Mary Paolone, MSRN
Clinical Trials And Research Information
NEALS' mission is to rapidly translate scientific advances into clinical research and new treatments for people with Amyotrophic Lateral Sclerosis (ALS) and motor neuron disease (MND).
The ALS Association has committed $99 million to find effective treatments and a cure for Lou Gehrig’s Disease.
Each month, ALS TDI brings together researchers from their lab and others for a conversation about an important topic to patients today. These can be on a specific trial, an emerging technology, or a broad theory gaining notoriety in the effort to combat ALS.
ALS Untangled helps patients with amyotrophic lateral sclerosis (ALS) to review alternative and off-label ALS treatments. Instructions for using ALSUntangled, as well as our published and active reviews can all be found on this website.
This magazine features the latest in ALS research news from the Muscular Dystrophy Association.
This blog aims to provide you with up-to-date information as well as the latest news on ALS/MND research.
The National Amyotrophic Lateral Sclerosis (ALS) Registry program, launched in October 2010, now includes registrants from all 50 states, according to the ATSDR. The registry collects information on PALS by using both existing data and self registration.
To understand the genetic basis of ALS and to ultimately find a cure for this devastating, fatal neuromuscular disease, Project MinE aims to analyse the DNA of at least 15,000 ALS patients and 7,500 control subjects. The resulting 22,500 DNA profiles will be compared.
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.
Assistive Technology Resources
Alisa Brownlee, ATP's blog offers recent articles and web information on ALS assistive technology, including augmentative alternative communication (AAC), computer access, and other electronic devices that can impact and improve quality of life for people with ALS. See also: @alsassistivetec on Twitter.
Amy Roman, MS, CCC-SLP is an Augmentative Communication Specialist at Forbes Norris ALS Research and Treatment Center. Her blog Amy and PALS offers ALS speech and communication solutions, plus tips from various ALS experts.
The objective of this webinar, presented by Sara Feldman, Physical Therapist at the MDA/ALS Center of Hope, is to educate health professionals and PALS on where to begin when addressing high-tech assistive technology options and to increase their knowledge on available devices...
Written Resources and Guides
- Computer Access Options for Individuals with ALS by Sara Feldman, DPT, ATP
- Assistive Technology by Sara Feldman, DPT in R. Bedlack and H. Mitsomoto (Eds.), Amyotrophic Lateral Sclerosis: A Patient Care Guide for Clinicians. (pp. 151-160). New York: Demos Medical Pulbishing
- Assistive Technology Solutions in Minutes by Therese Willkomm, PhD, ATP
- Assistive Technology Solutions in Minutes II: Ordinary Items, Extraordinary Solutions by Therese Willkomm, PhD, ATP
Assistive Technology Suppliers
DIY Assistive Technology Guides
- Conductive Contact Switch How-To Guide by Nicholas Ross
- Instructables - Assistive Technology
- Pinterest - Assistive Technology
- Ehow - Assistive Technology
Other Resources For PALS And Families
The mission of Hope Loves Company is to provide emotional and educational support to children and young adults who have family members battling ALS. The founder of Hope Loves Company, Jodi O'Donnell Ames, is also the author of the children's book The Stars That Shine, about a little girl who has to cope with a parent who has ALS. Enclosed with each copy of the book are resources for people living with ALS, their families, and their caregivers.
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.
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.