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...

๐–๐ก๐š๐ญ ๐ข๐ฌ ๐ฒ๐จ๐ฎ๐ซ ๐œ๐จ๐ง๐ง๐ž๐œ๐ญ๐ข๐จ๐ง ๐ญ๐จ ๐‚๐จ๐š๐ญ๐ฌโ€™ ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž?
My son, Carter, now 32, has Coats' Disease present in both eyes.

๐–๐ก๐ฒ ๐๐ข๐ ๐ฒ๐จ๐ฎ ๐ฃ๐จ๐ข๐ง ๐ญ๐ก๐ž ๐‚๐จ๐š๐ญ๐ฌ' ๐€๐ฆ๐›๐š๐ฌ๐ฌ๐š๐๐จ๐ซ ๐๐ž๐ญ๐ฐ๐จ๐ซ๐ค (๐‚๐€๐)?
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.

๐‹๐จ๐จ๐ค๐ข๐ง๐  ๐š๐ก๐ž๐š๐, ๐ฐ๐ก๐š๐ญ ๐š๐ซ๐ž ๐ฒ๐จ๐ฎ๐ซ ๐ก๐จ๐ฉ๐ž๐ฌ ๐Ÿ๐จ๐ซ ๐‚๐€๐?
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.


๐–๐ก๐š๐ญ ๐ค๐ข๐ง๐๐ฌ ๐จ๐Ÿ ๐ญ๐ก๐ข๐ง๐ ๐ฌ ๐๐จ ๐ฒ๐จ๐ฎ ๐๐จ ๐ฐ๐ก๐ž๐ง ๐ฒ๐จ๐ฎ ๐š๐ซ๐ž ๐ง๐จ๐ญ ๐ฏ๐จ๐ฅ๐ฎ๐ง๐ญ๐ž๐ž๐ซ๐ข๐ง๐  ๐ญ๐จ ๐ซ๐š๐ข๐ฌ๐ž ๐š๐ฐ๐š๐ซ๐ž๐ง๐ž๐ฌ๐ฌ ๐จ๐Ÿ ๐‚๐จ๐š๐ญ๐ฌโ€™?
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!

๐–๐ก๐จ ๐ข๐ง๐ฌ๐ฉ๐ข๐ซ๐ž๐ฌ ๐ฒ๐จ๐ฎ?
I am inspired by anyone who is able to think of others, especially in small ways. Over the last few years, as Carterโ€™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. Carterโ€™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, โ€œI got some good binoculars, Mom, so I can see better.โ€

๐–๐ก๐š๐ญโ€™๐ฌ ๐ฌ๐จ๐ฆ๐ž๐ญ๐ก๐ข๐ง๐  ๐š๐›๐จ๐ฎ๐ญ ๐ฒ๐จ๐ฎ ๐ญ๐ก๐š๐ญ ๐ง๐จ๐ญ ๐ฆ๐š๐ง๐ฒ ๐ฉ๐ž๐จ๐ฉ๐ฅ๐ž ๐ค๐ง๐จ๐ฐ?
Hmmm. I am generally an open book so not sure there are many unknown โ€œfun facts.โ€ I have to go way back to the time I inspired my girlfriends to do the โ€œCrosswalk Shuffle.โ€ Not sure I want to tell you moreโ€ฆ ;)

๐ƒ๐จ ๐ฒ๐จ๐ฎ ๐ก๐š๐ฏ๐ž ๐š ๐ฆ๐ž๐ฌ๐ฌ๐š๐ ๐ž ๐ฒ๐จ๐ฎโ€™๐ ๐ฅ๐ข๐ค๐ž ๐ญ๐จ ๐ฌ๐ก๐š๐ซ๐ž ๐ฐ๐ข๐ญ๐ก ๐‚๐จ๐š๐ญ๐ฌโ€™ ๐ฉ๐š๐ญ๐ข๐ž๐ง๐ญ๐ฌ?
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.