Meet The Board
Glenn Maughan
Hometown: Ogden, Utah
Title: Chairman
1. When you joined the Board, how did you see yourself contributing? Has that changed over time?
I knew there was a two-fold need in the community for awareness and support and I thought if I could do something to ensure people could get that help that would be a rewarding thing to do. Has that changed? If anything, the intensity of my focus has increased.
2. How does KBG syndrome affect you personally?
My son is profoundly affected by KBG and I will do everything within my power to help him live a better life.
3. What would you say to a family dealing with their new diagnosis? What advice would you give?
You must take it one day at a time. Tomorrow is always a new day and you have to keep that in mind when you are in the middle of all those ups and downs. It helps to channel your energy into understanding what needs to be done to help your family.
4. What do you feel is the most important result of raising awareness about KBG syndrome?
Bringing the awareness that you are not alone and you are supported by others who are going through the same things.
5. Where do you see KBG syndrome in 5 years? In 10 years?
I think within 5 years we will fully understand the mechanisms of the condition and have effective treatments. In 10 years: we will have a cure.
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