As we continue to do whatever it takes to make ALS a livable disease, we are sharing some of the many resources we have available for the ALS community to help educate, inform and guide you through the ALS journey.
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.
In very powerful testimony, members of the ALS community asked members of Congress to ensure the FDA acts with greater speed and regulatory flexibility during a hearing before the House Energy and Commerce Health Subcommittee.
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.
After Terry Peterson was diagnosed with ALS in 2019, his family decided to preserve the memories of their time together by documenting their journey in a video.
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.
After Bryan was diagnosed with ALS, the Stones immediately adopted the saying, “Today is the best day of the rest of our lives, and we’re going to make the most of it.” And in the days and years since, Bryan has done just that and is an awe-inspiring example of a true ALS hero living his life to the fullest.
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.
Every year on June 21 the International Alliance of ALS/MND Associations celebrates Global ALS Awareness Day, a day of recognition of ALS/MND – a disease that affects people in every country around the globe.
ALS is not unique to the US, it’s a global problem. It does not discriminate based on race, ethnicity, socioeconomic status, or region. People are living with the disease all over the world, and for every person diagnosed, the impact of the disease will forever be felt by their loved ones.
Amber Letters is a wife, a mom, a sister, and was a part-time caregiver for father who lost his battle with ALS this year. To honor her father’s legacy, she is sharing her family’s personal story, their journey with ALS and how they found hope along the way.
People with ALS on Tuesday called on the FDA to use its existing authority and the flexibility it promised the ALS community it would use to make experimental drugs that show incremental benefits available as quickly as possible. The comments came in a “We Can’t Wait” Action Meeting with FDA organized by The ALS Association.
People living with ALS and their caregivers face substantial financial burdens accessing and understanding insurance coverage and paying for medical treatments and services, causing high stress, added work burden and tremendous debt for individuals in the ALS community. No one understands this more than Jimmie and Dennis Thomasson in Mobile, Alabama.
Susan Seabrook is a wife, a mom, a sister, and a caregiver for her mother living with ALS. In honor of her mother on this Mother’s Day, she is sharing her family’s personal story, their journey with ALS and many of the moments she cherishes most.
Sally Dwyer is the Director of Mission Strategy & Integration for the Mid-America Chapter at The ALS Association. She has worked with the Association for 26 years and has experienced many moments and milestones throughout her career serving people impacted by ALS.
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.
The ALS Association is now accepting applications for The Jane Calmes ALS Scholarship Fund for the upcoming 2021-2022 school year. Established in 2019, the scholarship is designed to support post-high school education for students whose lives have been impacted by ALS, with recipients receiving up to $5,000 per year to help cover the cost of education.
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.
While local conditions for events vary state by state, the priority is the safety and well-being of people with ALS, their families and caregivers, and our volunteers and staff. So while Walk to Defeat ALS® events may look a little different from place to place, the ALS community will creatively come together safely in local markets to honor a loved one with the disease, to remember those who have passed, and to raise awareness and critical fundraising support for the fight against ALS.
ALS Focus recently launched its third survey, gathering data from ALS caregivers to identify the unique needs and challenges of ALS caregiving. Responses to this survey will help translate the caregiver experience into action and influence ALS programs and policy decisions. ALS Focus Director Dr. Sarah Parvanta detailed the questions her team is asking in the current survey during a recent episode of Connecting ALS. A portion of that conversation has been edited and condensed below.
As Feeding Tube Awareness Week comes to a close, we spoke with Brenda and Kelly Kraft and asked them to share their family’s story about their personal experience with making this difficult decision, and the relief they felt once they had made it.
