Meet the Board Monday Questions
Hometown: Gatineau, Québec, Canada
Title: KBG Board Member
1. When you joined the Board, how did you see yourself contributing? Has that changed over time?
I hope my contribution to the board will help other families struggling every day with the impact of this rare disease. As our KBG families do their best to survive daily challenges, I would like to contribute spreading the word around the world about our KBG families and this rare disease. I think awareness and understanding will enable doctors, specialists, teachers, students and parents as well as bosses and family members to accept our amazing and unique KBG superhero for who they are with their strengths and challenges.
2. How does KBG Syndrome affect you personally?
My daughter Chloé was diagnosed in October 2017. She was 3,5 years old at that time and it was a relief to finally know and understand why she had been struggling every milestones since birth. At the same time, this diagnosis gave me much more: I found the KBG foundation and its members. Forever grateful !!!
3. What would you say to a family dealing with their new diagnosis? What advice would you give?
This new diagnosis is hard to understand, and hard to accept. Please take your time and let's do this together. We are here to listen, to provide advice if needed, to share stories and lessons learned if needed but mostly, please see us as one big family who understands the daily struggles, the fights, the anger, the deception. We will also be there to celebrate every milestones achieved, every happy events, every answers found. Together for our KBG member.
4. What do you feel is the most important result of raising awareness about KBG Syndrome?
Our KBG member and their family have enough on their plate to deal with and awareness with those surrounding them will bring acceptance and understanding. We need to be present with our KBG logo, our KBG information package and our KBG website. We need to teach doctors, specialists, teachers, everyone involved with our KBG member about who they are, what they like and how amazing and unique each one is.
5. Where do you see KBG Syndrome in 5 years? In 10 years?
I hope more researches will be done on why and how it can be prevented. More researches on managing and eliminating symptoms. More diagnosis around the world and therefore, more answers for families in the dark right now. I hope the KBG Foundation will grow stronger, more financial resources, with abilities to reach out around the world and bring awareness, studies and answers to every KBG member and its family.
Research | Community | Cure