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ALS Association
Providing Independent Living and Quality of Life for People Living With ALS
The physical impact of living with ALS presents multiple challenges for those diagnosed and their families as the disease progresses. With the help of innovative technologies, some facilities around the country are finding creative ways to do whatever it takes to make ALS a livable disease.
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ALS Association
Preparing for the Physical Impacts of an ALS Diagnosis
Taking the time to understand the disease’s progression and make plans to deal with the physical impact can help ease the burdens faced by people living with ALS and their caregivers, helping them live longer, stronger, more independent lives.
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ALS Association
What Is FTD and How Is It Connected to ALS?
An ALS diagnosis is a devastating diagnosis in and of itself, but to learn your loved one has FTD as well can make it even more challenging to comprehend.
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Florida Chapter / ALS Association
ALS Certified Centers Doing Whatever It Takes to Deliver Critical Care
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.
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ALS Association
This Is What It Takes
We are on an urgent mission to make ALS a livable disease by 2030, to discover and fund promising treatments and to discover a cure. Our best opportunity to fulfill this promise and to continue delivering in the areas of Care, Advocacy, and Research is to reinvigorate our commitment to work as one. Driven by this belief, we will move from a federated to a unified structure.
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ALS Association
Increasing Awareness of ALS in Rural Communities
Health disparities in underserved and rural communities present serious challenges for people living with ALS. Like many of our local chapters around the country, The ALS Association Central and Southern Ohio Chapter and the team at OhioHealth ALS Clinic are working together to change that. In the fall of 2019, Michelle Edwardson, Director of Care Services for the chapter, began working with the team at one of their Certified Centers of Excellence, OhioHealth ALS Clinic, to develop a one-day comprehensive educational symposium for people living with ALS, their caregivers and medical professionals.
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ALS Association
Health Disparities and ALS
Investigators at Emory University School of Medicine reviewed 23 years of data from 1997-2020 for patients seen at the Emory ALS Center. To allow for adequate analysis of disease survival time, researchers included all patients who self-reported their race as Black or White and symptom onset was before January 1, 2017. A total of 1,298 patients were included in the study, 203 of whom were Black, and 1,095 of whom were White.
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ALS Association
Behind Recent Changes at CMS to Expand Telehealth
Recent changes to Medicare will enable people with ALS to receive services from speech language pathologists via telehealth through the end of the COVID-19 pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
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ALS Association
CMS Expands Telehealth Coverage for Speech-Language Pathology Services: Another Win for the ALS Community
Recent changes at the Centers for Medicare & Medicaid Services (CMS) will enable people with ALS to receive critical services provided by speech therapists, normally provided at in-person visits, via telehealth during the pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
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Florida Chapter
Guest Speaker: Jean Mendolia, RD
Jean Mendolia, RD, clinical dietitian at the Phil Smith Neuroscience ALS Clinic, gives nutrition advice to people living with ALS.
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Florida Chapter
Guest Speaker: Jeanne Struve, RD/N, LD
Jeanne Struve, RD/N, LD, dietician/nutritionist from the Affiliated ALS Clinic at Lee Health, gives nutrition advice to people living with ALS.
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ALS Association
Preparing for a Medical Emergency While Living with ALS
People living with ALS will likely experience complications related to the disease that warrant a visit to the hospital at some point in their journey. At the same time, they are not immune from other injuries or medical issues—people with ALS can still get sick or possibly hurt themselves in ways unrelated to the disease. Making the conscious choice to be prepared can make all the difference.
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ALS Association
Feeding Tube Awareness Week Q&A
This week, The ALS Association commemorates Feeding Tube Awareness Week, an opportunity to recognize the important role that feeding tubes can play in the lives of people with ALS.
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ALS Association
One Man’s Story About Why He Joined the Fight Against ALS
Through word of mouth, Stuart and his wife Marcia found five or six families in their community who were also dealing with the impact of an ALS diagnosis. They started an informal support group. The group started working with the chapter relations team at The ALS Association and formed The ALS Association Alabama Chapter.
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