I am Irene Shapiro
a family member of someone living with ALS
My father was diagnosed with ALS in October 2020. I joined the I AM ALS Legislative Affairs Team as a volunteer advocate because I owe every opportunity and success to his selfless sacrifices and dedication.
My father was diagnosed with ALS in October 2020. I joined the I AM ALS Legislative Affairs Team as a volunteer advocate because I owe every opportunity and success to his selfless sacrifices and dedication. I will never stop fighting for my dad.
My dad grew up in the former Soviet Union. He met my mom in his early 20s at her cousin’s hair salon. My dad, who wears his heart on his sleeve, told my mom that day they would be married. My mom replied, “you have some nerve!” His confidence paid off though. Despite being a total odd couple, my parents married shortly thereafter and were lucky to find in each other true soul mates, confidants and best friends. In late 1980s the collapsing Soviet regime finally granted exit visas to Jews like us who lived a life of oppression and discrimination. My mom was terrified to leave behind her parents, brother and everything she had worked for. My dad, however, refused to yield because a life of freedom in America was worth all the sacrifices and struggles.
We embarked on an incredible journey that brought us to Morris County, New Jersey. I was just 9 years old at the time. My very studious mom signed up for computer science courses at the community college. I acclimated rapidly to my new school and developed a broad circle of friends. My dad created these wonderful opportunities for us through grueling labor. Working as a long-haul truck driver, he would save every extra dollar provided for overnight hotels by sleeping in his truck in the dead of winter. He spent his days loading and unloading thousands of tons of freight, often without a helper. My mom was able to progress in her career. We became proud U.S. citizens. I finished college and then law school. All made possible by my amazing father, who always met life’s challenges with a smile and an open heart. His dream has always been to see his family happy.
I know in my heart that we can achieve effective treatments and eventual cure for ALS and commit to doing everything in my power to help us get there faster.