Clinical studies funded by the Association in the TREAT ALS™ research program include both clinical management projects that improve people’s lives in the present and clinical trials that hold promise in the future – for people living with ALS, caregivers and loved ones. Both are extremely important in the fight against ALS.
Thanks to the tireless work of ALS advocates, people diagnosed with ALS who already qualify to receive SSDI benefits are immediately eligible for Medicare as well. That makes Medicare open enrollment an important window of time for the ALS community.
Social distancing measures put in place in response to the COVID-19 pandemic created a unique dilemma for chapter staff who teach caregivers how to use critical assistive living devices that enhance the quality of life for their loved ones living with ALS.
During an observational study, researchers might follow a group of people living with ALS over time to see how their disease progresses or use a wide range of samples and clinical information to investigate genetic causes of ALS or potential biomarkers. Observational studies can also be used to explore the role of environmental factors, such as toxins, in ALS development.
We spoke with Renée Hetzler, physical therapist at the University of Rochester Medical Center’s multidisciplinary ALS and Huntington Disease Clinics, who shared her thoughts and experiences with patients and insights about the importance of physical therapy for people living with ALS.
Freedom of movement - walking, going up and down stairs, getting off the floor, completing daily activities, exercising—these are just a few of the activities that many of us take for granted and are able to perform without limitation. For an individual with ALS, these often become difficult or even impossible to do. As weakness develops in the legs, trunk muscles or diaphragm, active movement can become limited.
Our home has always been filled with family, friends, and joyful celebrations during the holiday season. It’s a time to connect with loved ones and create lasting memories. After my dad was diagnosed with ALS in March of 2017, creating holiday memories became especially important for our family. The average life expectancy for someone with this disease is 2 to 5 years, so we understand that every moment we spend together is precious.
If you or a member of your family are considering genetic testing, you could benefit from meeting with a genetic counselor to discuss the genetics of ALS, as well as the process and ramifications of getting tested.