I think it’s great when people can connect to others similar to them. It helps others to see what one is going through.
I love my CHARGE syndrome community on Facebook and instagram. I love to help others by telling them what I’ve been through. Everyone is like family.
I am a board member for the Australian foundation. It is good being on the board. I get to connect to new families and organise get togethers.
Being part of my CHARGE community is very rewarding. Others learn about what life is like for me and I see how people do different things.
Every year there is a confrence one year in the USA the other somewhere in Australia or Newzealand. The confrences are amazing you learn so much from medical to education’ therapy and family stories. Professionals and families all come together to catch up and learn new things. It is like one big reunion.
We all celebrate each other’s successes and feel the lows. It is a great thing being part of a community that is supportive.