The ALS Association believes that upon diagnosis, people living with ALS/MND and their families must have the right to access genetic counseling and testing, current education about clinical genetics in ALS/MND and safeguards against genetic discrimination. Thanks to a sponsorship from Biogen, the diagnostic company Invitae is offering genetic testing and post-test counseling to people with ALS and their families at no charge.

The impact of ALS on breathing is likely one of the most daunting aspects of the disease journey and one for which you and your family can and should prepare for early on. There are many different options and interventions to consider, and education and proactive planning can help to ease the stress for everyone involved.

Over a year ago, Sophia Harding became a volunteer for The ALS Association, a fourth-generation member of the Barnett family to join the fight against ALS. In the midst of the COVID-19 pandemic, she moved to Florida and joined the team at The ALS Association Florida Chapter as a Phone Friend Volunteer.

Navigating the world of healthcare and insurance, especially Medicare, can be very complicated and overwhelming. It's important to make the right decisions when it comes to health insurance plans and to understand the available options that could impact the critical care you need.

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.

October 1st marks the first day of National Physical Therapy Month, a time to raise awareness of the key role that physical therapists play in helping people improve mobility, find relief from pain, and live healthier, more physically able lives.

We recently spoke with JoCarolyn Chambers, care services manager at The ALS Association, to learn more about her experience in the field of grief counseling, how to handle these difficult and sensitive conversations about loss and the advice she has for people impacted by ALS.

Unlike most Medicare recipients who need extensive home care and rehabilitative services, people with ALS do not improve, and the intensity of their service needs increase over time. That means standard Medicare cost control approaches don’t work well. I will discuss two examples.

Telehealth has been an important element in U.S. health care for decades, but the COVID-19 public health emergency has put a spotlight on the need to maintain and expand access to telehealth to ensure everyone can receive appropriate care when and where they need it.

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.

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.

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.

The ALS Association and the U.S. Department of Veterans Affairs (VA) have entered into a partnership to help improve the lives of Veterans living with ALS by increasing the number of Veterans Health Administration (VHA) clinics that are designated as Certified Treatment Centers of Excellence and Recognized Treatment Centers.

Across the country, teams of health care professionals specially trained to address the needs of people living with ALS are doing whatever it takes to provide the specialized care and support their patients require.

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 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.

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.

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.

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.

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.