Meet the Crew!
This is the team behind this journey. Bruce Rosenblum, the inspiration behind it all, and Miron Golfman, the man on the bike.
I was diagnosed with ALS four years ago. Since then, it has gradually taken my physical strength. Five years ago, I led an active life that included skiing and kayaking. Three years ago I dropped those activities but could still, with assistance, helm a small sailboat. Today, I use speech recognition in lieu of typing, move very short distances with a walker, spend my days in a motorized wheelchair, and require a full-time caregiver to help me with even the simplest of tasks.
Despite a diagnosis that “sucks,” I have much to be grateful for. I have the loving support of family and friends. I use some pretty amazing technology to maintain my quality of life, continue to work, and speak out as an ALS advocate. And I have the privilege to be treated by a dedicated and compassionate medical team of more than a dozen ALS specialists at Massachusetts General Hospital, where I have participated in clinical trials for experimental treatments.
Today there is hope for me and others with ALS. There is a growing pipeline of potential treatments, and there are more technologies available every day to provide quality of life to those living with ALS. But the job is far from done. We still have a long way to go before those treatments reach FDA approval and are available to patients like me. We have much to do surmounting the daily challenges faced by my fellow ALS patients and their families as they go through the journey of this debilitating and fatal disease.
My nephew Miron lovingly took on the role of my primary caregiver 24 x 7 for 3 months. Inspired by the challenges that he saw me face every day, he is now taking on the physical challenge of an endurance ride to help people with ALS. Please help us raise community awareness of ALS, the people who live with it every day, and their families and caregivers by sharing this message. Please help those who live with ALS every day and support Miron’s ride by contributing to the ALS Association as generously as you can.
Thank you for showing your caring for ALS patients and their families as we go forward in our journey.
In the fall of 2020, I made the decision to step away from my daily life and work to take three months to live with, and act as a primary caregiver for my uncle Bruce. Three years prior Bruce had been diagnosed with ALS, and over that time I watched as the painful process of the disease progressed and Bruce’s physical reality diminished. During my time supporting Bruce, I developed an intimate understanding of the devastating effects ALS has on patients and their families.
Following my time as Bruce’s primary caregiver, I decided to step away from the world and go on a two-month bikepacking expedition with a friend from San Diego, CA to Cabo, Mexico (The Baja Divide). During this journey, I reflected on my time living and caring for Bruce and the larger reality of watching my family member, loved one, parental figure battle such a devastating disease. I came away from these two consecutive experiences with a newfound desire to live life to the fullest and not delay my life-long dream of athletics and cycling a day longer.
Over the past five months, I have been vigorously training and developing my skills as an Ultra Endurance Cyclist. Ultimately, it is my dream to use my platform as an athlete to raise awareness and support meaningful causes. In the winter of 2021, I will return to Baja Divide and attempt a FKT (fastest known time) of the bike route as a campaign to raise funds and awareness for the crucial work of ALS research.