The ALS Association Certified Center of Excellence at VA Puget Sound Health Care System in Seattle, Washington provides focused support for people living with ALS, allowing them to receive care from specialized medical professionals during a single visit.
For people living with ALS and their families, working with health insurance providers at all stages of the disease is a necessity to obtain the critical care and services they need. The ALS Association, local ALS care teams, and ALS multidisciplinary clinics can all be helpful in getting access to the care and equipment needed for people with ALS to live their lives as they choose.
The ALS Association’s Certified Treatment Centers of Excellence and Recognized Treatment Centers are dedicated to doing whatever it takes to provide compassionate care in a supportive, family-oriented atmosphere to help their patients live longer and stronger lives. One such center is the Phil Smith Neuroscience Institute at Holy Cross Health located in south Florida. “No matter what, the patient always comes first,” says Tina Duane, Regional Program Manager at The ALS Association Florida Chapter.
We want to help you live with ALS and help your caregivers feel confident in their role. Here are nearly 60 fact sheets and guides to give you and your loved ones information about everything from benefits, caregiving and home care to research, speech and swallowing, alternative treatments and more.
Joel Shamaskin spent 30 years caring for others as a primary care physician before his ALS diagnosis rushed him into retirement. Over the course of his career he had cared for some patients who had the disease, so by the time he received confirmation of his diagnosis, he and his wife Ann, who was a primary care physician as well, felt like they already knew. But ALS hasn’t taken away his desire to care for others.
The ALS Association joined 37 patient groups opposing a decision from a federal court in Texas that declared the Affordable Care Act (ACA) unconstitutional. The Texas v. United States decision is expected to be appealed to the U.S. Court of Appeals for the Fifth Circuit.
Pat was a former solutions team lead at Esri, a geographic information system (GIS) company, and spent his 25-year career in GIS creatively using mapping technology to solve real-world problems in the utility industry. Forced to retire in 2018 due to the progression of his disease, he had no idea where his passion for mapping and data would take him. “After my diagnosis, I wanted to bring GIS to the ALS battle, but wasn’t sure where to start,” says Pat.
For people with ALS, having access to an ALS multidisciplinary care center has been proven to both extend survival and enhance the quality of life for the people that attend. Clinics are neatly plotted on our locator map, making them easier for people living with ALS and their families to find.
Increased access to telehealth has long been a priority for The ALS Association and its advocates, as many people living with the disease have difficulty traveling to multidisciplinary clinics. In fact, many of the policy changes the Association pursued long before the pandemic have been enacted in response to the COVID-19 public health crisis. It is now critical that we fight to make those changes permanent.