When warriors in the fight against ALS came together in Union City, Tennessee, for their Walk to Defeat ALS®, they helped kick off The ALS Association’s 20th anniversary of the event.
The Walk to Defeat ALS brings together people with ALS, caregivers, and advocates every year to keep momentum going in the fight against the disease. Drawing people of all ages and athletic abilities together to honor people who are affected by ALS, remember those who have passed, and to show support for the cause, these events help expand the programs and services that benefit people living with the disease in our local communities across the nation.
Joel Shamaskin spent 30 years caring for others as a primary care physician before his ALS diagnosis rushed him into retirement. Over the course of his career he had cared for some patients who had the disease, so by the time he received confirmation of his diagnosis, he and his wife Ann, who was a primary care physician as well, felt like they already knew. But ALS hasn’t taken away his desire to care for others.
The ALS Association and Project ALS announced a joint two-year, $900,000 commitment to pilot a clinical research program for an investigational gene therapy for mutant FUS-associated ALS, at Columbia University’s Eleanor and Lou Gehrig ALS Center. This is the first step in developing a comprehensive strategy to treat multiple rare ALS genes.
“We want to develop simple pathways to treatments for all forms of genetic ALS including rare types,” said Neil Thakur, PhD, executive vice president, mission strategy at The ALS Association.
Today, The ALS Association launched the ALS Focus survey program. The goal is to recruit people living with ALS and their caregivers to capture their experiences and preferences. Data will be collected in a scientifically rigorous way through quarterly surveys. ALS Focus will provide a deep and evolving understanding of disease burden and experiences of people with ALS and their caregivers.
The program is a stakeholder driven and collaborative program run by people with ALS, caregivers, academics, industry, government, and ALS Association leadership. Together, they will ensure a unified and truly representative “voice” for the ALS community. This information is critical to ensure that the voice of people living with the disease directly informs research, clinical, regulatory, and drug company decisions.
Learning that you should consider a feeding tube can be overwhelming. It is a lot to take in, particularly in combination with the many medical issues that come with an ALS diagnosis. It is common for patients to be hesitant about it, but often, once they see the benefits of tube feeding, they often regret not making the decision sooner.
As part of the ALS care planning process, it is important for patients to discuss options with their multidisciplinary care team, weighing the pros and cons and understanding how their decision will affect their life while they are capable of making these decisions with the least amount of stress and difficulty.
The tallies are in for The ALS Association’s research program for the 2020 fiscal year, showing a total commitment of $21.5 million dollars in 70 promising research initiatives around the world.
“We hope that these strategic commitments in funding for research projects and infrastructure development will speed breakthroughs and accelerate drug development for ALS,” said Dr. Kuldip Dave, vice president of research at The ALS Association.
When the San Francisco 49ers and Kansas City Chiefs take the field for Super Bowl LIV, more than 100 million viewers are expected to tune in from homes, pubs and Super Bowl watch parties across the country. While the game itself is considered an iconic signature sports event for most Americans, many of us also identify this game with the smorgasbord of snacks that generally accompanies game watching. After all, a staggering 1.4 billion chicken wings are expected to be consumed during the big game this year, and the day is one of the biggest days for pizza sales every year.
For people living with ALS, planning a Super Bowl watch party requires additional attention to the feeding and swallowing challenges the disease creates. Did you know that 85 percent of people living with ALS will experience dysphagia, or difficulty swallowing, during their disease progression? This is an important issue in ALS care because of the high calorie, high protein requirements that people with ALS have to build and repair muscle and to maintain optimal body weight.