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ALS Is a Rare Disease, But Sometimes Doesn’t Feel Like It
Today is Rare Disease Day, an event that takes place worldwide, typically on the last day of February each year, to help raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. In recognition today, Kristina shares what it’s like to be a ALS caregiver for her husband, Lamar, and her unique perspective on the rarity of ALS.
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The Generous Son of an ALS Parent Elevates the Fight Against ALS
Our grandfather, Herbert Hoffman, died from ALS in February 1943. This was less than two years after Lou Gehrig passed away and his name became forever attached to this disease. We never knew our grandfather. But we knew and loved and treasured our time with our uncle, Hugh Hoffman. Our uncle’s incredible donation will be spent to expand access to existing multidisciplinary ALS clinics and to certify new ones. In addition, the donation will fund new and promising clinical trials.
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What Comes to Mind When You Hear the Word Joy? THIS.
Wendy and Michael Wilson live in Oklahoma City with their daughter, Londyn. Michael was diagnosed with ALS in 2017 at the age of 35. When she was just 10 years old, Londyn made sure her parents could celebrate their anniversary in style. Wendy tells us how.
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Researcher Spotlight: Annie Collins, 2023 Milton Safenowitz Postdoctoral Fellow
February 11th marks the ninth annual International Day of Women and Girls in Science, which serves as an opportunity to recognize the achievements of women working in science, technology, engineering, and mathematics. To celebrate, we are shining a spotlight on Annie Collins, one of our 2023 Milton Safenowitz Postdoctoral Fellows, and how she is helping move the development of new ALS treatments forward.
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Feeding Tubes: 10 Things to Know
In most people’s journey with ALS, they will be confronted with the decision of using a feeding tube to help maintain proper nutrition and enhance their quality of life. As part of the ALS care planning process, people with ALS should discuss the various options with their multidisciplinary care team, weigh the pros and cons, and understand how their decision may impact their overall health.
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Better, Together: The ALS Multidisciplinary Care Approach
We know multidisciplinary care for people living with ALS and their families is proven to extend survival and improve quality of life. At the ALS Association, we work with the best ALS physicians and clinics across the U.S. to make sure people living with ALS have access to the best specialized care no matter where they live. Our Certified Treatment Centers of Excellence™ and Recognized Treatment Centers™ provide people with ALS compassionate care in a supportive, family-oriented atmosphere.
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Navigating Insurance Denials: A Major Hurdle for People Living with ALS
To help educate the public and raise awareness of the growing issues people with ALS and their families struggle with, ALS Association CEO Calaneet Balas recently shared her views about insurance denials in an op-ed published by the International Business Times, specifically relating to the use of ventilators and assistive technology.
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Making ALS Livable: Newly Funded Research Aims to Optimize Care and Improve Quality of Life
The type of care that people with ALS receive affects survival and quality of life. That is why the ALS Association is committing nearly $2 million over the next two years to support research focused on optimizing the effectiveness, efficiency, and accessibility of ALS care. These funds, granted through the new Quality of Care Research Awards, will be distributed across five projects that focus on the health and care for people living with the disease.
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The Power of Storytelling
Stories have connected us for generations, often providing impact and making waves of change. Discover some of the most powerful stories from the ALS community and share to help spread awareness of this disease today.
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Tips for Dealing with Cold Weather for People with ALS
People with ALS already experience stiff muscles in their hands, arm, legs and feet, and winter temperatures can make this situation worse. Cold weather causes muscles to contract and become tight, which can be painful. However, people living with ALS can still enjoy this time of year. Here are some tips on dealing with cold weather for people affected by ALS.
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2023: Our Year in Review
In 2023, unprecedented accomplishments were made in the fight against ALS in care, research, advocacy and more. We can't wait to see what 2024 has in store towards our vision of creating a world without ALS.
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Today Is a Good Day to Have a Good Day
Even as they face ALS, Tim and Deanna Trausch try to live by message on the ornament that hangs on their bathroom mirror: “Today is a good day to have a good day.”
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