My ALS Story
On November 27th, 2019, I was diagnosed with ALS. My wife Jen and I were just starting to “get the hang” of being parents to our amazing one-year-old son and my wife was pregnant with our daughter. My ALS diagnosis hit hard and fast, so when I received it, that is when the race to find answers began. I spent countless hours researching the disease, speaking with doctors, trying out new technology—anything I could to help manage this crippling diagnosis and to extend my life for my family.
Early on, I started to record my journey on my phone to document the disease and the impact that it was having on me emotionally, physically, and mentally. At the same time, I also began filming videos with my kids – words of advice, hopes, and dreams for them – and happy family videos so that they’d have them to watch in the future. Documenting, archiving, and sharing the videos with friends and family also became a way for me to raise awareness for ALS, as our community rallied around us, and as we began to connect with others living with ALS.
A few months into my ALS journey, my wife’s brother, Chad, was watching an episode of 60 Minutes that featured StoryFile. He knew that I had been documenting my experiences and took the initiative to reach out to StoryFile’s CEO directly. Our conversations with StoryFile evolved quickly. At first, the plan was to work with their team to create a personal story using their technology for my children; however, after my wife and I saw this interactive Q&A technology “really work,” we knew instantly that this was going to be a transformative way to provide educational resources for caregivers and people with ALS.
In the summer of 2021, our nonprofit organization Paint for a Cure launched a partnership with StoryFile to create a way for families with ALS, their caregivers, and experts in the field to use StoryFile’s technology to create access to an open-source resource for those living with ALS.
We are actively working with ALS experts – doctors, caregivers, patients, technology reps, etc. to answer questions about the disease progression, wheelchairs, feeding tubes, eyes gaze devices, health, and so much more. This interactive technology allows them to ask a specific question and receive a more personable response. That way, they can navigate the diagnosis and challenges along the way. To learn more about my journey with StoryFile, check out this video.
“Each moment matters and is valuable. The purpose of this resource is to make access to trusted information – and real-world tips and advice – more quickly available to those with ALS so they can spend the precious time they have on what is most important: family” - Eric Weinbrenner
I encourage everyone to record a StoryFile, especially if you have kids. This technology has created a recording that our kids can watch in years to come and see what my life was like. With this technology, it is easier to ‘journal’ your life and share stories with your family and future generations. It’s a very personal treasure trove of information to carry on your legacy and share your thoughts and dreams with your children—especially when you have ALS, and the disease later strips you of your voice and movements. Regardless of if you are living with a terminal disease, we are all going to pass and StoryFile is a great way to capture your life for friends and family.
Working with StoryFile has been wonderful. I am super excited to see all the pieces come together, and I know these interviews will be a great resource to many. To view and interact with my StoryFile, please click here.
About Paint for A Cure
Paint For A Cure was founded by Phoenix resident Eric Weinbrenner. On November 27th, 2019, the day before Thanksgiving, Eric was diagnosed with Lou Gehrig’s disease (also known as ALS). After receiving this overwhelming news, he turned to painting to cope. This became a creative outlet to calm his nerves and mind, allowing him to shift his focus from his diagnosis to his art. Eric realized the healing power of creativity and was inspired to start Paint For A Cure. Paint For A Cure lends support to those affected by ALS. Their main goal is to provide medically accessible housing and monetary assistance to ALS patients and their families who cannot afford these necessities. Visit the Paint For A Cure website for more details.