Have You Met…? | Molly Mager from Behind the Mystery: Rare and Genetic

by Carri Levy

Producing a daily talk show is a monstrous job. Especially when you are navigating the world of rare diseases. When my daughter was at her sickest and the doctors were still telling me that they had no idea why she was writhing on the floor from pain, I set in motion a series to learn all about rare diseases.

Molly Mager, a producer who sat in the office next to me, became my partner on this huge undertaking. There were many interviews that she has taken over mid-sentence, while I ran out of the studio to rescue my daughter. All of the behind the scenes on our series Behind the Mystery: Rare & Genetic are watched over by Molly.

She is my Superstar of the Rare Disease world that I chose to interview this month.

I hope you become as big a fan of hers as I have become.

Carri Levy: What got you interested in learning more about rare disease?

Molly Mager: Most of my career in TV has been focused on creating health content for the morning talk show on Lifetime Television, The Balancing Act.  Instead of covering segments related to common health topics like breast cancer or diabetes, I had always made it my goal to give a voice to conditions that were not widely discussed or covered on mainstream media. Rare diseases; however, had never even crossed my mind. It was not until 2010, when my brother was diagnosed with Acinar Cell Cystadenoma, that I started to become familiar with rare diseases. While my brother was one of only a handful of people in the US ever documented with this diagnosis, I learned that there were so many others out there with small diseases states just like him. As fate would have it, around this same time was when your daughter was diagnosed with two rare diseases, so together, we joined forces and created Behind the Mystery: Rare & Genetic – a series dedicated to rare and genetic disease awareness.

CL: How has all this knowledge about rare diseases contributed to your life?

MM: The entire journey with my brother, along with all of the knowledge I have gained as a result of creating segments for Behind the Mystery, has made me more sympathetic and empathetic toward anyone living with a rare disease.

CL: What is your biggest inspiration?

MM: I am in constant awe of the strength of the rare disease community. The thousands of stories I have heard over the past three years, motivate me daily to find every way possible to keep the Behind the Mystery: Rare & Genetic Series going!

CL: What would you tell those people on your Behind the Mystery Series to do, to better help them spread the education that you do?

MM: I would tell our participants to share their segments with all patient groups representing their disease, in addition to giving the segments to doctors and specialists to run in their waiting rooms. Our goal with the programming is to get each and every Behind the Mystery: Rare & Genetic segment in front of as many eyeballs as possible, so patients are not misdiagnosed and the road to getting their diagnosis is not a long one.

CL: What are your plans for future programming?

MM: We just launched a new show called Access Health, airing every Wednesday between 7-8 a.m. ET/PT on Lifetime Television. I would like for the Behind the Mystery: Rare & Genetic Series to have a second home on this show. Traveling out of the studio, doing more of a day-in-the-life journey with our rare patients is something we are working toward for 2015 as well.

CL: Is there a patient in the rare disease world that stands out as a role model for education that you would like to shout out to?

MM: Your daughter, Ilana Jacqueline always stands out in my mind as a role model for education. She has done a brilliant job creating awareness for her two rare diseases via her blog, and is an outspoken, passionate and dedicated advocate for the entire community.

CL: Many of the patients that we meet have a lot of down time in their days, when they are either in the hospital or at home in bed, what are some of your favorite movies or TV series that you could recommend to them?

MM: I am actually a huge fan of podcasts, so I would recommend This American Life as well as Serial, which is a new podcast from the creators of This American Life. Also: The Balancing Act on Lifetime Television (smiles, had to plug our show).