𝐒𝐮𝐳𝐚𝐧𝐧𝐞 𝐂𝐨𝐧𝐧𝐨𝐥𝐥𝐲 𝐋𝐞𝐯𝐞𝐫𝐞, 𝐌.𝐄𝐝.
Suzanne has been an integral part of the Jack McGovern Coats' Disease Foundation for nearly 15 years. Her contributions have included serving as Director and President of the Jack McGovern Coats' Disease Board of Directors. She has been an invaluable mentor and sounding board for the many parents who reached out after a diagnosis and is now the leader of the Coats' Ambassador Network, which she was instrumental in forming. Her dedication to the Foundation and efforts to help the Coats' community are unwavering and we are so grateful to have her as part of our Foundation!
We caught up with Suzanne to learn more about her and why the Coats' Ambassador Network is important to her...
𝐖𝐡𝐚𝐭 𝐢𝐬 𝐲𝐨𝐮𝐫 𝐜𝐨𝐧𝐧𝐞𝐜𝐭𝐢𝐨𝐧 𝐭𝐨 𝐂𝐨𝐚𝐭𝐬’ 𝐃𝐢𝐬𝐞𝐚𝐬𝐞?
My son was diagnosed with Coats’ Disease 15 years ago, at age 12, and the Jack McGovern Coats’ Disease Foundation provided the support I needed, as there was very little information about Coats’ Disease online. Tina McGovern answered my telephone call and shepherded me through the daunting process of finding a doctor, asking the right questions, and learning the vocabulary of Coats’ Disease. But that was only a part of it. Tina gave me the assurance that my son would be ok. She talked about being “Mama Bears protecting our cubs” and it was then that I knew that I was not alone on the Coats’ journey.
𝐖𝐡𝐲 𝐝𝐢𝐝 𝐲𝐨𝐮 𝐣𝐨𝐢𝐧 𝐭𝐡𝐞 𝐂𝐨𝐚𝐭𝐬' 𝐀𝐦𝐛𝐚𝐬𝐬𝐚𝐝𝐨𝐫 𝐍𝐞𝐭𝐰𝐨𝐫𝐤 (𝐂𝐀𝐍)?
We established the CAN in order to build a network of individuals who would be able to participate in a variety of ways (according to interests, talents, skills, and resources) in the mission of the Foundation. Since I became involved with the Foundation and joined the Board, one of the goals has been to broaden our outreach in the areas of raising awareness, supporting patients and their families, and funding research. The CAN provides a great opportunity for people to help move the Foundation forward with the added benefit of learning from the members and their experiences with Coats’ Disease.
𝐋𝐨𝐨𝐤𝐢𝐧𝐠 𝐚𝐡𝐞𝐚𝐝, 𝐰𝐡𝐚𝐭 𝐚𝐫𝐞 𝐲𝐨𝐮𝐫 𝐡𝐨𝐩𝐞𝐬 𝐟𝐨𝐫 𝐂𝐀𝐍?
My hope is that the CAN will continue to grow and engage members of the Coats’ community who could benefit from, and contribute to, the work of the Foundation. I hope that we will broaden our outreach to educate school health professionals so that they may be more prepared to detect Coats’ and other eye diseases and conditions. We want children to get referrals to specialists who can catch things early and save children’s sight.
𝐖𝐡𝐚𝐭 𝐤𝐢𝐧𝐝𝐬 𝐨𝐟 𝐭𝐡𝐢𝐧𝐠𝐬 𝐝𝐨 𝐲𝐨𝐮 𝐝𝐨 𝐰𝐡𝐞𝐧 𝐲𝐨𝐮 𝐚𝐫𝐞 𝐧𝐨𝐭 𝐯𝐨𝐥𝐮𝐧𝐭𝐞𝐞𝐫𝐢𝐧𝐠 𝐭𝐨 𝐫𝐚𝐢𝐬𝐞 𝐚𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐨𝐟 𝐂𝐨𝐚𝐭𝐬’?
In the past, my family has done foster care through the State of Connecticut and I am currently interested in work to support women, and specifically young moms, complete their education and thereby improve not only their own lives, but the lives of their children and the health of their communities.
I love to ski, sail, and travel. I enjoy learning more about architecture, history, and art as we explore.
𝐖𝐡𝐨 𝐢𝐧𝐬𝐩𝐢𝐫𝐞𝐬 𝐲𝐨𝐮?
I am inspired by the many who support non-profits worldwide in doing the work that needs to be done. Specifically, I am inspired by those who contribute their time to the work of the Jack McGovern Coats’ Disease Foundation: the many who serve on our Board of Directors, on the CAN, or in other capacities and are giving of themselves just because they want to do good work. Additionally, our Scientific Advisory Board (SAB) consists of many of the most prominent doctors and researchers in pediatric retina. These are the leaders who are busier than anyone can imagine… yet they volunteer their time to evaluate grant proposals, to advise patients who reach out to the Foundation, and to help guide the Board in the strategic leadership of the Foundation.
𝐖𝐡𝐚𝐭’𝐬 𝐬𝐨𝐦𝐞𝐭𝐡𝐢𝐧𝐠 𝐚𝐛𝐨𝐮𝐭 𝐲𝐨𝐮 𝐭𝐡𝐚𝐭 𝐧𝐨𝐭 𝐦𝐚𝐧𝐲 𝐩𝐞𝐨𝐩𝐥𝐞 𝐤𝐧𝐨𝐰?
Last November (in an awkward move) I broke a rib racing sailboats in California and I would do it again tomorrow! It was an amazing day with fabulous people who love racing old wooden boats!
𝐃𝐨 𝐲𝐨𝐮 𝐡𝐚𝐯𝐞 𝐚 𝐦𝐞𝐬𝐬𝐚𝐠𝐞 𝐲𝐨𝐮’𝐝 𝐥𝐢𝐤𝐞 𝐭𝐨 𝐬𝐡𝐚𝐫𝐞 𝐰𝐢𝐭𝐡 𝐂𝐨𝐚𝐭𝐬’ 𝐩𝐚𝐭𝐢𝐞𝐧𝐭𝐬?
You are not alone! We have patients who are mentors who can answer your questions and tell you about their experiences. We host online groups where you can meet other patients. We have resources to help you and your families! You will be successful and will find your way to the things that you are supposed to be enjoying. You will thrive. I am in awe of your strength and resilience!
