Have You Met Carri Levy?Date:14 December 2016
Like most people in the rare disease community, I found myself searching for an answer to some puzzling symptoms that my daughter was having. She had been sick most of her life. Years of testing, doctors’ visits, hospital stays, nasty experiences, and some very scary close-calls, brought me to the place of desperation. I needed an answer, no matter what.
By the time she reached adulthood, I had been working for several years on Lifetime TV’s daily morning talk show, “The Balancing Act.” It was my job to find guests for the show for educational segments. Stretching myself thin between research for my daughter and research for the show finally inspired me to just combine the two.This is how Behind the Mystery; Rare & Genetic was created. Out of the selfish need to find an answer to my daughters symptoms.
The show has been a great success and because of my involvement in it, I’ve been invited behind the scenes to the rare community. Today I am actively involved in the rare disease community as a patient advocate. My job brings me the opportunity to learn about rare disease heroes, advocates, leaders, and scammers.
My job is to filter through all of the jargon and find the best stories to bring to our national audience–and to find a way to translate the complex medical world and deliver it to patients and parents in need of answers–just like me.
What I find is the most interesting aspect of my job, interviewing new companies, scientists and CEOS, is the motivation of the people behind the scenes that you have no idea about. People that work every day to make sure that your doctor knows about these diseases, and the treatments that are in clinical trials and are also widely, immediately available. These are the stories that I want to tell to you.
My series will be profiling the people behind the scenes in the day to day trenches of the rare disease community. Scientist, product managers, marketing directors, and executive directors. People that have a passion to help every day. You would be surprised how many wonderful people are working to help us .