We spoke with Pam Knott, vice president of data and technology at The ALS Association, to learn more about how the Association is harnessing the power and potential of big data to speed up the process of empowering people to live longer lives, to access care, to bring new treatments to market, and to reduce the harmful impact associated with the disease.
Cole Thompson and Lamar Woody have been friends since the seventh grade, although Cole readily admits he had lost touch with his friend after college. Cole moved away from Auburn, Alabama, and life took him and Lamar in different directions. Then one day Cole saw a GoFundMe page someone had created for Lamar and his family after Lamar was diagnosed with ALS. “From there, Lamar and I started chatting again on Facebook, and rekindled our friendship,” Cole says.
The ALS Association’s nationwide network of local care teams work tirelessly with families to provide education, support and resources to help. One of those care team members is Melissa Enfinger, director of care services in Alabama, who works very closely with the Woody family in Auburn.
Holiday celebrations and traditions are times of fun, fellowship and of course, food. And, while the holidays are meant to be enjoyed, they can also be a tremendous stressor for people living with ALS and their families.
Natalie Woody was only four and a half years old when her father Lamar was diagnosed with ALS in 2018. Full of personality and spirit, Natalie’s parents agree that she’s no different than any other child her age, she just happens to have a dad who has ALS.
As no two cases of ALS are the same, nor are any two ALS caregivers. There is no one-size-fits-all answer to each caregiver question, but that is not to say there isn’t much to be gleaned from the experiences of others.
The ALS journey is difficult, so whether it is family, or friends or community volunteers, finding people who are willing to help, and accepting the help they are able to give, can make all the difference. We had the privilege of sitting down with the Woody family’s “village,” to talk about ALS, how it impacts their everyday life, and their incredible devotion to be a part of the family’s ALS journey. Here’s what they had to say.
Kayla met Lamar Woody back in 2017 at the music store where he taught voice and piano lessons. As her very first vocal coach, Lamar will always have a special place in her heart. He not only taught her how to sing and use her voice, he taught her about ALS.
For someone facing the daunting challenge of becoming an ALS caregiver, there are many paths to gaining the knowledge and experiences they need to care for someone with the disease. Regardless of how you prefer to learn, one thing everyone can benefit from is a reliable source of information, which can be found in the new ALS Association Caregiver Education Course.
As with hundreds of thousands of veterans, Michelle served her country honorably, eventually attaining the rank of captain, and moved on to a civilian life of work and family. But life wasn’t done with twists and turns for Michelle. In 2011, she began experiencing some muscle twitches. She didn’t think much of it at the time, and certainly didn’t suspect anything serious. “The chances of having ALS are miniscule and I never dreamed that would be my diagnosis,” Michelle says. But it was.
In 2008, the Department of Veteran Affairs established ALS as a service connected disease. In doing so, the VA made it possible for veterans who were diagnosed with ALS to receive compensation based disability, grants for housing, vehicle modifications and much more. A veteran's spouse and dependents may also be eligible for benefits, but a quirk in the law governing survival benefits means that spouses of veterans are being denied access to survival benefits after they lose their loved ones.
Kristina met Lamar Woody in high school, although it wasn’t until college when they really found their true connection. Lamar loves to tell everyone Kristina was the prettiest girl in school. Little did she know then she would not only become his wife and mother of their beautiful daughter, Natalie, but she would also become his ALS caregiver.
Only those living through the experience first-hand truly understand the challenges of being a full-time caregiver, particularly for someone living with ALS. The ability to complete basic daily tasks can be overwhelming and the need for help is great. Finding ways to help and show support for the caregiver in your life can make a huge difference for them, and for you.
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.
Lamar and Kristina Woody are a lot like any other busy, hard-working couple. They’re juggling careers, education and the day-to-day activities of their sassy and smart nine-year-old daughter, Natalie. Married for over twelve years, they love laughter, music and spending time with family and friends, living their life focused on love, friendship and positivity. They are also living with ALS.
While the travel industry is paying greater attention to the special needs of people with mobility challenges, much more needs to be done to ensure everyone has equal access to safe air travel. The Air Carrier Access Amendments Act is designed to do just that.
The ALS Association recently announced the creation of a new award to honor “superfans,” the most passionate sports and entertainment fans who are also living with ALS. The award is inspired by Stephen Kauffman, who was diagnosed with ALS in 2012, and was honored in 2021 by the Naismith Memorial Basketball Hall of Fame as a Golden State Warriors superfan.