Know the Signs, Fight for Victory

Q & A with Jan Lynch, MSN, RN: Director of Help & Resource Center

Jan Lynch, MSN, RN, joined The Marfan Foundation staff in April as the Director of the Help & Resource Center. Through this blog post, we hope you get to know her a bit more and feel comfortable contacting her by phone or email with your medical questions and concerns.

How did you get into the healthcare field? 

When I was young, I wanted to be a veterinarian. I loved animals! Somewhere along the way, I decided I wanted to help people more, so I chose to become a nurse. Over the years, I have worked with various populations in different settings, for example, maternal-child nursing and med-surg nursing in the hospital and long-term care settings. I also taught nursing over the years, and I thoroughly enjoyed that role because I love sharing my knowledge as well as learning from nursing students. I must say I love helping those with special needs and the elderly.

What is your philosophy about patient education? 

Patient education is such an important part of healthcare. We need to empower others so they can help themselves and their family members. So much of what patients and their families do requires them to be knowledgeable in order to connect to the right resources, advocate for themselves, speak out for their family members, and provide care at home for their loved ones. Thankfully, people are more inquisitive now and want to be in charge of their own well-being. I think, however, sometimes we expect too much of patients and their families; that is, we put too much on them and they feel overwhelmed and don’t know how to proceed. There is a fine line between enabling and supporting/helping.

How will your previous experience help you in your role as director of our Help & Resource Center?

My primary role in nursing has been in nursing education, whether it be with patients in the hospital setting, students at nursing schools, or nursing colleagues through my most recent role as nurse editor/nurse executive of, a national nursing print and online magazine. As a nurse educator, I have always enjoyed learning, and that is another special part of my new role at The Marfan Foundation. I have learned so much in the short while I have been here at the Foundation, and I know that I will continue to learn and grow in my role.

How do you hope to empower individuals and families with Marfan and related disorders?

In the short time I have been here, I have already seen that I can empower individuals and their families in a number of ways. Knowledge is power, for sure, and I hope to reach out and empower those in our community. I hope to enable those in our community to find the right resources, obtain the knowledge they need, network with others, and find ways to feel supported and loved. Sometimes people just need to know that someone is listening to what they have to say. So far I am impressed with the Marfan community — the knowledge they already possess, the way they reach out and speak up, and the strength they have to move forward, day after day.

What was your experience like at the Boston Symposium on Marfan Syndrome, Ehlers Danlos Syndrome, Loeys-Dietz Syndrome, and Related Disorders?

My first day in my new role was spent at the Boston symposium. Wow, it was enlightening, so educational, heart-warming, and exciting! The professionals who presented at the symposium are so knowledgeable and open to helping the community learn. The participants brought their own enthusiasm and openness … ready to learn, network, and share stories with one another and with all of us from the Foundation.

What are some of your interests outside of work?

I spend most of my time outside of work with my family and friends. They have all brought me to places I would never have gone, for example, attending and watching Notre Dame football games and attending parades where bagpipers play! This June our oldest son, Jim, is getting married to a wonderful young lady, and we are so happy to have her join our family. I love to read and walk and go to the beach, and I love to go out with family and friends.

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Janice Petrella Lynch, MSN, RN, is the director of the Help and Resource Center at The Marfan Foundation.

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