News & Stories
What Showing Up for Walk ALS Means to Claire Sharp
Claire Sharp’s story is one of resilience, advocacy, and connections. Her favorite time of the year is when the ALS Northwest walk fundraiser comes to her community in Southern Oregon, not only raising money for her and many others living with ALS, but creating a day full of love and celebration. To support Claire and others living with ALS, register now for a Walk ALS near you (April-May 2026).
Few people embody resilience quite like Claire Sharp. She’s a vibrant member of the ALS Northwest community whose beauty and kindness shines even brighter in the face of adversity. Every year, she rallies her fundraising team for her local Walk ALS – supporting services like case management and support groups that her and hundreds of others living with ALS receive through ALS Northwest.
In 2014, Claire and her husband Rick moved to Medford, Oregon, to start their life together in a place they both felt drawn to call home. Their love story is one you read about in storybooks, dating all the way back to high school, where Claire and Rick were good friends. After graduation, their paths took them down different roads causing them to lose touch and start their own families. Then, at their high school reunion decades later, they crossed paths again, rekindling the bond they once had. A year and a half later, they met up in Santa Monica and the rest was history. Their story is a beautiful reminder that what is meant to be, always seems to find its way.
Claire’s diagnosis journey, like many others living with ALS, was not straightforward. She first noticed symptoms in 2022 when she went on her weekly walk around the neighborhood with her friends. One day, she realized she was walking with a limp on her right foot but couldn’t figure out what was wrong. This is the catalyst that began months of testing and doctors’ appointments to get to the bottom of what was going on.
When Claire found out she has ALS she was very surprised. No one expects to hear that news, and, on top of that, no one expects their doctor to deliver the news in such an abrupt manner. Claire very graciously recalled the moment her Ashland doctor told her about her diagnosis.
Photo: Claire and her family on a cruise.
“He looked at me and said, ‘I am 95 percent sure you have ALS, you poor woman.’” These words cut deep, causing Claire to quickly pivot where she wanted to receive care.
No one should have to experience a doctor treating them like this, especially when diagnosed with such a life-altering disease. Unfortunately, this is the reality of so many people living with ALS. The invasive tests, difficult conversations, poor treatment, and endless medication take a toll. Despite all of this, Claire refused to let this disease diminish her light and learned to trust that things will work out the way they are supposed to, just like they did with her husband.
As time went on and Claire began learning more about her disease, her doctors discovered she has familial ALS, which is found in just 5-10% of people with ALS. She was astounded to find out she had the mutated gene her whole life and only started having symptoms when she reached the age of 70. Familial ALS is the only type with a relatively new, specific spinal medication that is administered intrathecally to target the central nervous system, which can help slow down the progression of the disease. This medication was a glimmer of hope on a journey of uncertainty.
Getting access to the medication was a long road, and one Claire had to fight for. The medication required monthly trips to Portland for injections, a significant burden for someone in Medford. Rather than accept this barrier, Claire advocated for herself to be able to receive the injections at the hospital in Medford, being the first to receive it there. This determination not only improved Claire’s quality of life but has paved the way for others.
Thanks to the medication, Claire has seen her disease progression slow down. Although she still has bumps along the road, like breaking her ankle twice, she still has control and strength in her upper body that allows her to continue to enjoy activities that bring her joy. Moments like her weekly game nights with friends, cooking in the kitchen, and spending time with family remind her how grateful she is for the people around her.
Community has been a source of strength for Claire, and ALS Northwest has given her many opportunities to be a part of one. As an avid support group attendee, Claire has become a pillar of the ALS Northwest Southern Oregon community and appreciates the organization giving her a space to be with people who understand what she is going through.
Walk ALS is another place where Claire feels a deep sense of support. Every year, she rallies up a large team of supporters and fundraisers ready to make a difference. She believes “it is the most encompassing event and the easiest to be involved in because it is right in my own community.” The walk reminds Claire she is not alone on her journey and that there is a community of people who want to lift her up just as she has lifted many others.
“I feel grateful that an organization like ALS Northwest exists because I know so many other people with different diseases that don’t get the same support,” she said. Claire looks forward to the walk every year because, to her, it is more than a fundraiser — it is a celebration of solidarity, hope, and the power of showing up for one another.
Claire’s story is one of courage, strength, and unwavering optimism. She shows that a person can live well with ALS by meeting challenges with strength, community, and an unwavering spirit.