Amy Dann joins worldwide board

MAKING CHANGE... Amy Dann has recently joined the worldwide board for CDG Care. Pictured, Amy and Michael Dann with their four-year-old son Louis, and nine-month-old son Isaiah. Photo: Kelly Carmody

“Life is as good as you choose it to be”

CONGENITAL disorders of glycosylation (CDG) is an umbrella term for a rapidly expanding group of over 160 rare genetic/metabolic disorders. Due to rare defects in a complex chemical process known as glycosylation, Amy and Michael Dann’s four-year-old son Louis is one of only a few people here in Australia and the world, that is affected by it.

Since Louis’s diagnosis in 2018, Amy and Michael have strived to raise funds and awareness for CDG Care, a cause that is close to their heart. They are extremely passionate about helping educate other families about CDG and are hopeful that scientific research on these rare conditions will provide more answers for an earlier diagnosis and more treatment options.

In February, Amy was also appointed on the worldwide board of CDG Care, as a board of director. A role that she is passionate about alongside other parents.

“I have always been interested in the research and what the funds are being spent on, we are not the only family here in Australia going through this, I want to help others and make change,” said Amy.

Monday, May 16 this year is World CDG Day, an annual event that provides international focus for patient groups and families living with CDG. It is an opportunity to raise awareness and influence change, and this year Amy and Michael have organised a special event the day prior on Sunday May 15, at 12pm, at the All Abilities Playground in Shepparton.

They are encouraging people to wear green and be a part of a group walk around the Victoria Park Lake, with a provided lunch to follow back at the playground.

“Raising the awareness is so important to us, in the past we have done more extreme styles of fundraising such as ‘everesting,’ which was last year’s challenge, so this year it will be nice to have a more relaxed feel, and just walk and talk with people,” said Michael.

Louis’s health at present is overall quite stable, but everyday does come with its challenges. Amy and Michael are making the most of life and family and are enjoying watching Louis grow and now play with his younger brother Isaiah.

“Life is what you make of it, we have good and bad days just like everyone else. It is lovely to be surrounded by family and overall, the generosity of others. Life is as good as you choose it to be, and along the journey we are dedicated to helping others and making change,” said Amy.

For more information on CDG Care, World CDG Day and how to donate straight to the charity, head to cdgstrong.squarespace.com