I am honored to be running the 2022 Boston Marathon for Compassionate Care ALS.
My father, Paul Jensen, was diagnosed with ALS in January of 2018. Prior to his diagnosis, our family had only heard of ALS because of the ice bucket challenge. We quickly learned that ALS is absolutely heartbreaking and slowly takes away a person’s ability to control the muscles needed to move, speak, eat, and breathe. Sadly, we lost Paul on November 11, 2020. The mental, physical, and financial toll of the disease is unfathomable and I can’t imagine how we could have endured it without the help of Compassionate Care ALS.
Not long after Paul was diagnosed, Ron Hoffman entered into our lives. I still remember the first time that Ron visited our home and sat with my parents and me around our kitchen table and talked about ALS. That afternoon, in the kindest most thoughtful way, Ron taught us ALS 101. For the first time since my dad was diagnosed, someone was actually talking to us about what we needed to do day-to-day to help Paul navigate. There will never be enough words to express how grateful we were to have Ron and CCALS.
As his disease progressed, Paul continued to talk to Ron. They debriefed doctors appointments, discussed home-equipment needs, and dreamt about ground-breaking ALS research. Knowing that CCALS shared Paul’s vision and supported his dogged (and sometimes daunting) determination to participate in clinical trials meant so much to us.
As my dad’s health deteriorated, our gratitude for CCALS grew exponentially. CCALS was there to help us with wheelchairs, shower seats, bathroom renovations, ramps, and computer equipment. Like good friends, Ron and his team always had our backs. We will forever appreciate the invaluable services that CCALS provides to family members, caregivers, and patients with ALS.
It is a privilege to run the Boston Marathon on behalf of CCALS. My sisters, mother, and I will never stop trying to help those with ALS – the Jensen gals are committed for life! There is nothing I want more than to honor my Dad’s memory and raise money to support other families living with ALS.
In 2019, I ran my first Boston Marathon for Paul. It was so fun seeing his smiling face along the route. He was my best coach and biggest cheerleader, often setting lofty goals for his adventurous daughter – and yes, Coach Jensen, this time I will keep a better pace. Not seeing him at mile 13 will really suck, but I know my dad will be there with me, cheering me on as I sprint to the finish line.