MICHAEL and Amy Dann are passionate about raising awareness and helping educate other families about congenital disorders of glycosylation (CDG), which is a rare genetic/metabolic disorder that affects their four-year-old son, Louis.
On Sunday, May 15, the day before World CDG Awareness Day, the Dann family arranged a special gathering in the All Abilities Playground in Shepparton, where everyone was encouraged to wear green. Around sixty people attended this special event and took part in a group walk around the Victoria Park Lake.
Following the walk, Dunkirk Food Store provided a BBQ with some home made salads for everyone to enjoy a lovely lunch together, and Michael and Amy told The Adviser that everyone stayed around till about 3.30pm.
“It was just great to see so many people out and about for such a rare condition. Whether it was peoples’ fourth World CDG Awareness Day or their first celebrating with us, it was humbling and inspiring to have everyone there join us for Louis and the CDG community,” said Michael.
“I had a few people message me and say it looked like a really fun and loving day, and I really felt that way. It’s pretty special really,” said Amy.
To reach out to Michael and Amy for how you can help make a difference to CDG Care, the CDG community and the important research efforts, head to cdgstrong.squarespace.com
