Janet Goman
Janet is an active member of the Jack McGovern Coats' Disease Foundation's Coats' Ambassador Network. Her participation has often led to new ideas, improved resources, and encouragement for others to become more involved.
We caught up with Janet to learn more about her and why the Coats' Ambassador Network is important to her...
𝐖𝐡𝐚𝐭 𝐢𝐬 𝐲𝐨𝐮𝐫 𝐜𝐨𝐧𝐧𝐞𝐜𝐭𝐢𝐨𝐧 𝐭𝐨 𝐂𝐨𝐚𝐭𝐬’ 𝐃𝐢𝐬𝐞𝐚𝐬𝐞?
My son, Carter, now 32, has Coats' Disease present in both eyes.
𝐖𝐡𝐲 𝐝𝐢𝐝 𝐲𝐨𝐮 𝐣𝐨𝐢𝐧 𝐭𝐡𝐞 𝐂𝐨𝐚𝐭𝐬' 𝐀𝐦𝐛𝐚𝐬𝐬𝐚𝐝𝐨𝐫 𝐍𝐞𝐭𝐰𝐨𝐫𝐤 (𝐂𝐀𝐍)?
I joined to learn more about Coats' Disease. I was also looking for other people who would understand the disease and how it affects an individual as well as their family. As this is a rare disease, it has not been easy to find people who understand this particular disease.
𝐋𝐨𝐨𝐤𝐢𝐧𝐠 𝐚𝐡𝐞𝐚𝐝, 𝐰𝐡𝐚𝐭 𝐚𝐫𝐞 𝐲𝐨𝐮𝐫 𝐡𝐨𝐩𝐞𝐬 𝐟𝐨𝐫 𝐂𝐀𝐍?
My hope would be that we stay on top of current research, we continue to support each other, and, most importantly, continue to support the Coats' Disease community - both patients and families.
𝐖𝐡𝐚𝐭 𝐤𝐢𝐧𝐝𝐬 𝐨𝐟 𝐭𝐡𝐢𝐧𝐠𝐬 𝐝𝐨 𝐲𝐨𝐮 𝐝𝐨 𝐰𝐡𝐞𝐧 𝐲𝐨𝐮 𝐚𝐫𝐞 𝐧𝐨𝐭 𝐯𝐨𝐥𝐮𝐧𝐭𝐞𝐞𝐫𝐢𝐧𝐠 𝐭𝐨 𝐫𝐚𝐢𝐬𝐞 𝐚𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐨𝐟 𝐂𝐨𝐚𝐭𝐬’?
My husband and I own our own business focused on economic development /real estate consulting and this work keeps me busy during the day. I enjoy boating, am a huge needle pointer, and will drop everything when my kids come to town. Thanksgiving dinner is the highlight of my year!
𝐖𝐡𝐨 𝐢𝐧𝐬𝐩𝐢𝐫𝐞𝐬 𝐲𝐨𝐮?
I am inspired by anyone who is able to think of others, especially in small ways. Over the last few years, as Carter’s Coats' Disease has severely affected the vision in his left eye, I am hugely inspired by him and how he addresses his health. He simply never gives up and is willing to try anything as far as his eye health is concerned. He does not let the management of this disease affect how he lives his life in any way. Carter’s Dad and I are so darn proud of him!
As an example of how Carter lives his life, he just arrived back from hiking Mount Kilimanjaro, which was approved by his retinologist. All he said to me regarding his vision was, “I got some good binoculars, Mom, so I can see better.”
𝐖𝐡𝐚𝐭’𝐬 𝐬𝐨𝐦𝐞𝐭𝐡𝐢𝐧𝐠 𝐚𝐛𝐨𝐮𝐭 𝐲𝐨𝐮 𝐭𝐡𝐚𝐭 𝐧𝐨𝐭 𝐦𝐚𝐧𝐲 𝐩𝐞𝐨𝐩𝐥𝐞 𝐤𝐧𝐨𝐰?
Hmmm. I am generally an open book so not sure there are many unknown “fun facts.” I have to go way back to the time I inspired my girlfriends to do the “Crosswalk Shuffle.” Not sure I want to tell you more… ;)
𝐃𝐨 𝐲𝐨𝐮 𝐡𝐚𝐯𝐞 𝐚 𝐦𝐞𝐬𝐬𝐚𝐠𝐞 𝐲𝐨𝐮’𝐝 𝐥𝐢𝐤𝐞 𝐭𝐨 𝐬𝐡𝐚𝐫𝐞 𝐰𝐢𝐭𝐡 𝐂𝐨𝐚𝐭𝐬’ 𝐩𝐚𝐭𝐢𝐞𝐧𝐭𝐬?
Advocate, Advocate, Advocate! Keep informed. And live your life to the fullest as this will help you and those who love you. A positive, winning attitude will go a long way in helping you manage your eye health.
