๐๐ฎ๐ณ๐๐ง๐ง๐ ๐๐จ๐ง๐ง๐จ๐ฅ๐ฅ๐ฒ ๐๐๐ฏ๐๐ซ๐, ๐.๐๐.
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...
๐๐ก๐๐ญ ๐ข๐ฌ ๐ฒ๐จ๐ฎ๐ซ ๐๐จ๐ง๐ง๐๐๐ญ๐ข๐จ๐ง ๐ญ๐จ ๐๐จ๐๐ญ๐ฌโ ๐๐ข๐ฌ๐๐๐ฌ๐?
My son was diagnosed with Coatsโ Disease 15 years ago, at age 12, and the Jack McGovern Coatsโ Disease Foundation provided the support I needed, as there was very little information about Coatsโ 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 Coatsโ Disease. But that was only a part of it. Tina gave me the assurance that my son would be ok. She talked about being โMama Bears protecting our cubsโ and it was then that I knew that I was not alone on the Coatsโ journey.
๐๐ก๐ฒ ๐๐ข๐ ๐ฒ๐จ๐ฎ ๐ฃ๐จ๐ข๐ง ๐ญ๐ก๐ ๐๐จ๐๐ญ๐ฌ' ๐๐ฆ๐๐๐ฌ๐ฌ๐๐๐จ๐ซ ๐๐๐ญ๐ฐ๐จ๐ซ๐ค (๐๐๐)?
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 Coatsโ Disease.
๐๐จ๐จ๐ค๐ข๐ง๐ ๐๐ก๐๐๐, ๐ฐ๐ก๐๐ญ ๐๐ซ๐ ๐ฒ๐จ๐ฎ๐ซ ๐ก๐จ๐ฉ๐๐ฌ ๐๐จ๐ซ ๐๐๐?
My hope is that the CAN will continue to grow and engage members of the Coatsโ 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 Coatsโ and other eye diseases and conditions. We want children to get referrals to specialists who can catch things early and save childrenโs sight.
๐๐ก๐๐ญ ๐ค๐ข๐ง๐๐ฌ ๐จ๐ ๐ญ๐ก๐ข๐ง๐ ๐ฌ ๐๐จ ๐ฒ๐จ๐ฎ ๐๐จ ๐ฐ๐ก๐๐ง ๐ฒ๐จ๐ฎ ๐๐ซ๐ ๐ง๐จ๐ญ ๐ฏ๐จ๐ฅ๐ฎ๐ง๐ญ๐๐๐ซ๐ข๐ง๐ ๐ญ๐จ ๐ซ๐๐ข๐ฌ๐ ๐๐ฐ๐๐ซ๐๐ง๐๐ฌ๐ฌ ๐จ๐ ๐๐จ๐๐ญ๐ฌโ?
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.
๐๐ก๐จ ๐ข๐ง๐ฌ๐ฉ๐ข๐ซ๐๐ฌ ๐ฒ๐จ๐ฎ?
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 Coatsโ 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 imagineโฆ 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.
๐๐ก๐๐ญโ๐ฌ ๐ฌ๐จ๐ฆ๐๐ญ๐ก๐ข๐ง๐ ๐๐๐จ๐ฎ๐ญ ๐ฒ๐จ๐ฎ ๐ญ๐ก๐๐ญ ๐ง๐จ๐ญ ๐ฆ๐๐ง๐ฒ ๐ฉ๐๐จ๐ฉ๐ฅ๐ ๐ค๐ง๐จ๐ฐ?
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!
๐๐จ ๐ฒ๐จ๐ฎ ๐ก๐๐ฏ๐ ๐ ๐ฆ๐๐ฌ๐ฌ๐๐ ๐ ๐ฒ๐จ๐ฎโ๐ ๐ฅ๐ข๐ค๐ ๐ญ๐จ ๐ฌ๐ก๐๐ซ๐ ๐ฐ๐ข๐ญ๐ก ๐๐จ๐๐ญ๐ฌโ ๐ฉ๐๐ญ๐ข๐๐ง๐ญ๐ฌ?
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!
