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.
The physical impact of living with ALS presents many challenges, especially as the disease progresses. With the help of assistive technologies, people living with ALS can maintain their independence and pursue their passions for as long as possible.
Amanda Howard has always used writing to process things personally and professionally. When she faced the challenges of living with ALS, she started blogging about it - at first for herself, and then for the community.
We urgently need more and better ALS treatments. Because of this, getting promising therapies out of the laboratory and into clinical testing as quickly as possible is key to making ALS a livable disease.
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.
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.
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.
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.
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.
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.
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.
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.
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.
There is an urgent need for new and improved therapies for ALS, as there is still no cure. To help accelerate drug development and get promising treatments one step closer to regulatory evaluation, the ALS Association has committed nearly $4 million to support four early-stage clinical trials through our Clinical Trial Awards.
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.
For people with ALS and their families, traveling presents challenges beyond the typical concerns about weather, delays, and traffic jams. But with some planning and patience, you can ensure everyone is able to make it to their destination safely. Here are some tips to help make the trip as smooth as possible.
While the number of ALS clinical trials has greatly expanded over the last five years, the number of people living with ALS participating in this research remains low and highly variable across trial sites. Our five 2023 Trial Capacity Award winners are working hard to eliminate barriers to trial participation.