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About the solution
While there are currently no cures for ALS, there are three FDA-approved treatments that may help slow down the progression of ALS for some patients. Similarly, there are over eighty clinical trials underway right now with the goal of finding effective therapies. We have created an easy solution to what is normally daunting.
Together, ALS patients and caregivers are proud to share the ALS Signal: Clinical Research Dashboard that provides all stakeholders in the ALS Community - clinicians, pharmaceutical companies, researchers, patients, caregivers and families - with comprehensive and critical information on the full scope of treatments in 80-plus trials worldwide. This dashboard will help people living with ALS access, evaluate and be empowered with information on clinical trials to take to their physicians that we hope will lead to new treatments.
By working on this tool with top neurologists around the world, the I AM ALS Promising Therapies Team - comprised of ALS patients, advocates, caregivers and families - has already helped those living with ALS to:
- Find and evaluate promising clinical trials, often the most challenging step in participation
- Initiate more informed discussions about treatments with their medical teams by arming people living with ALS with comprehensive knowledge and recent details
- Provide input to pharmaceutical companies looking for data on trial design and the scope of drugs in trials, a key to continuously improving the science.
Our intent is to empower everyone who wants to seek new treatments and share this new resource with people living with ALS around the world, offering hope and community as we rewrite the ALS story.
https://www.youtube.com/watch?v=aeLYTqx6a9w
This solution shall not include mention to the use of drugs, chemicals or biologicals (including food); invasive devices; offensive, commercial or inherently dangerous content. This solution was not medically validated. Proceed with caution! If you have any doubts, please consult with a health professional.
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Brothers Jamie and Ben created PatientsLikeMe - a plaftform that connects ALS patients
CAREGIVING
Amyotrophic Lateral Sclerosis
Website
Enhancing health literacy
Promoting self-management
Promoting inclusivity and social integration
Preventing (Vaccination, Protection, Falls, Research/Mapping)
Raise awareness
Caregiving Support
General and Family Medicine
Internal Medicine
Medical Genetics
Orthopedics
Physical Medicine and Rehabilitation
Rheumatology
United States
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Wheelchair user creates mobility app
MOVING IN A WHEELCHAIR: Moving using a wheelchair.
Paralysis
App (Including when connected with wearable)
Restoring mobility
Promoting self-management
Managing Neurological Disorders
Building Supportive Community Relationships
Promoting inclusivity and social integration
Preventing (Vaccination, Protection, Falls, Research/Mapping)
Raise awareness
Caregiving Support
Internal Medicine
Neurology
Orthopedics
Physical Medicine and Rehabilitation
Rheumatology
Belgium
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Slacks with zippers on both sides for patients who have to stand up in public
CAREGIVING
(SELF)-CARE: DRESSING: Dressing independently.
Amyotrophic Lateral Sclerosis
Strategy/Tip
Body-Worn solutions (Clothing, accessories, shoes, sensors...)
Tremors
Muscle cramps or spasms
Stiffness or rigidity (difficulty moving)
Muscle weakness
Trouble with fine motor skills (e.g., writing, buttoning clothes)
Sleep disturbances
Numbness or tingling in the extremities
Restoring mobility
Managing pain
Promoting self-management
Managing Neurological Disorders
Promoting inclusivity and social integration
Preventing (Vaccination, Protection, Falls, Research/Mapping)
Caregiving Support
General and Family Medicine
Medical Genetics
Medical Oncology
Neurology
Orthopedics
Physical Medicine and Rehabilitation
Rheumatology
United States
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