How a boy who had been a ‘curb detector’ for a mother with muscular dystrophy grew to become a man fighting to break down healthcare barriers for all
Curbs. It all started with curbs.
I was born in a middle-to-upper-class Connecticut suburb of New York City where I was raised by two hardworking parents that have devoted their professional careers to the pharmaceutical industry. When I was about 8 or 9 years old my parents told me that my Mom had been diagnosed with a rare, highly aggressive form of muscular dystrophy.
For many years, in my juvenile mind, these were simply two complicated words that had no tangible impact. However, as the months and years went by, the words became alive. Vacations took different shapes and forms based on the physical activities my mom could participate in. As walking became increasingly more difficult, I became hyper sensitive to physical barriers that could potentially trip her up.
Curbs. I soon became obsessed with watching out for them. Whether it was on our way into the grocery store, pharmacy, or mall - they seemed to be placed in the most illogical odd areas. In front of access points to ramps, alongside handicapped parking spots, or corralling the exits of elevators. I had learned a valuable lesson. Society is not structured to easily adapt for those battling a chronic condition.
The responsibility of identifying and out-maneuvering barriers-to-care rests on the shoulders of the patient. After spending several years at a biotechnology trade association analyzing state and federal health policy I have come to GHLF to continue my quest against curbs. Based in Washington, DC I work for you. Through this blog (and other avenues of communication), I plan to advise patients on how best to navigate important pieces of legislation coming out of the Capitol and state houses across the nation.
I look forward to contributing information to this site that helps you to become a more informed stakeholder, perhaps even motivating you to join the fight as an advocate!
I am your professional curb detector. I am Policy Wonk Steve.
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