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Name: Suzanne Robotti

Business: MedShadow Foundation

Location: New York, New York, U.S.

Industry: Healthcare, Wellness & Fitness

Reason for starting? I founded MedShadow Foundation in 2012 after two major health issues drove me to become engaged in patient advocacy. My mother, like millions of other women in the 1950s and 1960s, took the prescription drug DES (diethylstilbestrol), which was thought to prevent future miscarriages. The drug was widely used despite earlier publication of a study that linked DES to reproductive organ malformation and even cancer. DES was eventually taken off the market in 1971. When I reached childbearing age myself, I discovered I was infertile due to DES exposure. This prompted me to join DES Action USA, a patient advocacy group. In 2010, my son’s physician prescribed Ritalin for his ADD, but was unable to explain the medication’s side effects. This prompted concern about the long-term effects of this stimulant on my son’s developing brain. These two experiences prompted me to form MedShadow Foundation as a means of bringing light to side effects of medications.

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How do you define success? I recently passed a milestone birthday, so I’ve been thinking about success — what it meant to me when I was starting out in my career and what it means now. I was very ambitious in my 20s, and I enjoyed working long hours and the travel. But as I got older, I realized that I wasn’t putting in the time needed to have meaningful relationships. I was stymied for a time, trying to decide which was more important, success at work or success with friends?

Finally I realized I didn’t have to choose, but I did have to redefine success. I decided to focus only on what mattered to me most. In business, I wanted to be the “Paul Revere” of side effects and encourage everyone to consider the risks and the benefits of medicines. With friends and family, I didn’t have to be the host of every gathering or organize every get-together, but I did have to show up. Success means caring deeply about the work I do and having close relationships with friends and family.

Biggest success: I don’t have a medical background, which is unusual for a person in my position. For the past 5 years, I’ve worked hard to learn the science so that our team can help people understand the risks and the benefits of medicines and so that our website will have credibility.

Being named by the Food and Drug Administration (FDA) to the Drug Safety and Risk Management (DSaRM) Advisory Committee as the consumer representative is an acknowledgement that I’ve created a website that is respected. More importantly, it gives me a seat at the table when decisions are being made about safety and efficacy of medicines. The DSaRM Committee is charged with advising the commissioner of food and drugs on the safety, efficacy and abuse potential of drugs or other substances. We recommend actions with regard to marketing, investigation and control of those drugs.

My goal is for every conversation with a doctor that mentions medication to include a frank discussion of potential risks and limits of benefits of that medication. The MedShadow website will grow to be a location to discover what side effects are known about medicines and how to manage those side effects if the patient decides to take them. To get there, we are growing our social media footprint daily. We place articles on similarly themed websites. We are creating downloadable packets with questions for people to take with them when they speak with healthcare providers.

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What is your top challenge and how you have addressed it? Now that is 5 years old, my biggest challenge is to make it sustainable for the long term. We have been working diligently with Gray Matters NYC (a group of retired senior executives, who work with nonprofits on a pro bono basis), on a strategic plan and, specifically, a development strategy for fundraising. Medication side effects touch every family. It’s crucial that our message is clear and our donation request compelling.

Who is your most important role model? In my bio I mention I’m a DES daughter. There were millions of people affected by DES and medical harm on that scale was unprecedented. From the pain and anger of the women given the drug and their children who were also affected by it, rose a core group of activists led by Pat Cody, a DES mother. Through her leadership and work, people united, laws were changed and wrongs were addressed. While those affected by DES can never be compensated for what the drug companies took away, Pat gave us all a voice.

Twitter   @Med_Shadow
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