Storytelling is among the oldest forms of communication, the commonality of all human beings, in all places, in all times. Stories help to establish connections between us. They can inspire us, evoke emotion, and educate us by providing information we would not otherwise have.
Whether as a person living with ALS or as a caregiver or loved one to someone living with the disease, sharing your story can help others in the ALS community and beyond feel connected to the impact ALS has on the people it touches. It can be a powerful tool to show others they are not alone, spread invaluable awareness of the disease, and help inform change for people with ALS.
Over the past year we have received many stories from people all across the ALS community who are sharing their personal experiences to do just that. Here are some highlights from just a few of the stories we’ve received so far:
Sarah Waterman lost her mother to ALS. She recalled taking the Ice Bucket Challenge in 2014 saying, “We did it for ‘fun’ – a video challenge for a good cause. Little did I realize my mom would be quickly consumed a few years later by that exact same disease.” Sarah’s passionate advice to others:
“Do not sit still when those with ALS struggle to stand. Do not stay silent when those with ALS will no longer speak. We can do more.”
Bill Corrigan was diagnosed with ALS on Groundhog Day in 2022 and shared his story with us in a video. “I asked myself, ‘how has this diagnosis really changed my hopes and goals?’ The uncertainty remained so I decided not to give up on my dreams,” he said. “That's when I redefined ALS as an adaptive lifestyle, a way to embrace the challenges, and keep moving forward.” He set himself on a mission to complete the World Marathon Major Six Star, a challenge that drove he says drove him forward. “I've already finished 14 marathons, including four Majors, and I'm preparing to do the last two proving nothing can hold me back in the face of this crappy prognosis.”
Justine Mendiola lost her mother to ALS when she was a teenager, her mother was just 48 when she was diagnosed. “My mom was such an amazing person, everyone who met her loved her. I miss her every day. She was so loving and caring,” she said. Her mother was a kindergarten teacher and was adored by her students and all those who knew her.
“I will always hold on to the memories I got to make with her for the 16 years she was by my side. Rest in peace Mama, I’ll forever make you proud,” she shared.
Joseph Redmond was diagnosed with ALS in November of 2013. “The doctors call it a ‘non-traditional’ form of ALS…which is a medical term that means: ‘We have no idea what’s gonna happen to you, tomorrow,’” he shared. He lost his career in radio and record promotion when ALS took his ability to speak. But Joseph has not let ALS take his voice. As an ALS advocate, he meets with legislators “to put a face on the mission and help them see what their constituents are dealing with. It’s so important that Congress increases ALS research funding.
"We need support to find new treatments and cures. We need support to help make ALS a LIVABLE disease. There is no cure…YET! We need a chance to put an end to this death sentence,” he says.
Angela Frederick was diagnosed in 2013 at the age of 39. She said that after hearing of her diagnosis and the fact she would likely have only three to five years to live, she went into a deep depression and developed terrible anxiety. “With the help of prayer and my family I started to live again,” she shared. “Now ten years later my two kids are grown, my daughter is married with two adorable children, my husband is attending college to become a counselor, and I have a wonderful pup who gets me outside. My advice to all ALS patients is to pray, live, and enjoy the time you have left, which may be longer than you think.”
Chris Stone was diagnosed with last April at the age of 53. After the loss of his father’s half-sister, he became aware ALS is running in his family, and, like many in his situation, he is very interested in learning more about the disease and finding out what type of mutation he may have. “I believe this is the beginning of a journey, and I'm not down and out I want to fight this until I can't,” he shared.
Through pictures, audio, video, or just the written word, you too can share your experience of the impacts of ALS. Like Chris, and Angela, and Bill and so many others, your story and personal perspective can play an important role in educating people about this disease and inspiring them to get involved to help make a difference in the lives of so many.
You can read their full stories, and many others, here and share yours TODAY!