Meet The Board
Grant Slovin
Hometown: Skokie, Illinois
Title: Social Media Coordinator
1. When you joined the Board, how did you see yourself contributing? Has that changed over time?
I first joined the board after helping my mom (Marla) and Annette come up with social media ideas. I saw a spot for myself in a creative light, and social media savvy sense.
2. How does KBG syndrome affect you personally?
Both my father and brother have KBG syndrome. I am always talking to my mom (Marla) about their appointments, what is going on with them, and anything else that I need to know. KBG syndrome has impacts numerous things in my life but at the end of the day, my father is my father, and my brother is my brother. KBG syndrome is just another thing that is special about our family.
3. What would you say to a family dealing with their new diagnosis? What advice would you give?
I would tell them that KBG is not a definition – things do not start and stop there. I would explain how at an early age, I watched my mother battle day in and day out for my brother for the various conditions that make up KBG. KBG is an umbrella, it is a name that describes everything that sits beneath it. Most importantly, I want a family to know that there are others out there who have likely experienced the same frustrations and dead-ends as them and that they are not alone.
4. What do you feel is the most important result of raising awareness about KBG syndrome?
Awareness in the medical field. As a health care professional, I know firsthand how urgent it is to educate those who have finished their formal training. Raising awareness at all levels of healthcare would be the most important result.
5. Where do you see KBG syndrome in 5 years? In 10 years?
In both 5 and 10 years, I see KBG syndrome reaching far beyond the knowledge of geneticists and becoming a part of medical education for pediatricians. I would love to see a larger community of individuals that is outside the traditional “need” for a support group; whether that is siblings, friends, or anyone else out there who may be affected by KBG syndrome.
