5 Organizations Working To Improve The Lives Of Those With ALS
Those with ALS develop progressive muscle weakness, which leaves individuals highly dependent on family, friends, and special equipment to complete their daily activities. Fortunately, there are many organizations dedicated to helping people diagnosed with the disease by providing advanced treatments and assistive technology. In no particular order, here are some groups providing the support that those with ALS need.
First up, at #1, we have the Les Turner ALS Foundation. Founded in 1977, it provides individualized care and local community support for those affected by amyotrophic lateral sclerosis. Through its online Learning Series, the group offers interactive educational resources covering a wide range of topics, such as telemedicine and respiratory care.
Its Support Services Team is available at no cost to those who reside within the foundation's service area. Among its offerings are various educational materials and programs, home visits by nurses and social workers, and support group meetings. The organization also offers financial assistance to individuals living with ALS and their families.
Coming in at #2 is Compassionate Care ALS, a nonprofit offering individualized support to patients, as well as their families and caregivers. In partnership with Massachusetts General Hospital, the organization's House Call Program provides patients from all walks of life with access to medical services at home.
“When I talk to families that are dealing with this, they are running back-to-back triathlons trying to support their family member,” said Jean Z. Batty, government affairs liaison with Compassionate Care ALS, a charity that supplies ALS patients with equipment not covered by insurance and advocates for their care.
Through its van program, clients gain access to wheelchair-friendly vehicles that they can use to complete all kinds of tasks, such as attending medical appointments or going on a vacation. The organization also provides families with a medicine bag containing equipment that helps patients stand and move around, including gait belts and transfer slings.
Next, at #3, is the University of Miami ALS Center, which offers multi-specialty support for patients and families from the time of diagnosis until the end stages of the disease. Its team works with researchers to find a cure, providing patients with essential care and opportunities to participate in clinical trials.
In the February 22 Neurology online, scientists reported that a fragment of the p75 neurotrophin receptor could mark progression for amyotrophic lateral sclerosis (ALS). Researchers led by Mary-Louise Rogers, Flinders University Centre of Neuroscience in Adelaide, Australia, and Michael Benatar, University of Miami, Florida, confirmed that ALS patients shed more of the extracellular domain of this receptor into their urine than healthy controls do, and that their p75ECD levels rise as disease worsens. The researchers propose that p75ECD could become the first marker of ALS progression, and that it could prove useful in clinical trials.
During a typical visit to its clinic, to address various aspects of the disease, patients meet with its team of multi-disciplinary specialists, including neurologists, physical therapists, psychologists, dietitians, and more.
Taking the #4 spot is Team Gleason, a group dedicated to improving the lives of people who have ALS. Co-founded by Steve Gleason, a former athlete diagnosed with the disease in 2011, the organization has partnered with leaders in tech and innovation to provide assistive equipment for those in need.
The Team Gleason House for Innovative Living is a residential facility that empowers residents to live with continued purpose with the help of technology. There, despite their physical limitations, residents can control much of their environment, allowing them to thrive in a more stimulating and supportive space.
Finally, at #5, we have the MAC Angels Foundation, which seeks to enhance the quality of life for individuals with ALS. Among its offerings is the Loaner Closet, which contains used or donated medical equipment that patients may use for free for as long as they need.
Through the MAC Angels' Narrative Writing Workshop, participants are given the opportunity to write about their experiences as caregivers for someone with ALS. Among the foundation's fundraising projects is Shoot for the Moon, an album by musician Steve Felix that also features other musicians from the Asheville, NC area.