Amanda Gilchrist’s love of scrapbooking combines perfectly with her commitment to research into a cure for Muscular Dystrophy.

Amanda Gilchrist became involved with Muscular Dystrophy (MD) NSW when her closest friend was diagnosed with the disease at the age of 28. “It was hard for everyone to deal with as it was such a shock to us and because no one really knew what MD was,” she remembers. “I had never heard of it. Since then I’ve had the honour of attending a ladies’ support group for MD and met some of the most amazing and inspiring women with MD or mothers of children with MD; it helped with my understanding and made me want to help in some small way.”

Late one night, while catching up on the phone with a friend who’d just returned from overseas, Amanda and her pal started talking about MD and how they should do something to help with raising money and awareness. “In no time at all the scrapbooking day was born,” she says.

Last year Amanda and co. raised $2983 (their goal was $1500) at the first Newcastle Muscular Dystrophy Fundraiser and the feedback she received was “amazing”.  “Before the event had even finished I had ladies asking when I was doing it again and could it be soon,” she says. “I also received emails afterwards thanking me for a wonderful day and asking when the next one would be held... Not only did we raise the money but 75 ladies had a fun day and lots of new friendships were formed.”

Amanda chose scrapbooking because, over four years of enjoying this hobby herself, she’d attended a number of crops and often listened to people marvel at how quickly the time goes when you’re attending one. “I also knew that the scrapbooking community is caring and supportive. I could count on scrapbookers to make it a success,” she says.

Funds raised go towards supporting the main programs that Muscular Dystrophy (MD) NSW runs. Among these are meeting equipment requests for wheelchairs, hoists and seating, providing respite breaks for people with muscular dystrophy andtheir families and carers, dealing with emergency requests for people who are in financial hardship, even providing replacement batteries for wheelchairs and more.

“Equipment costs can be exorbitant, with an electric chair in the region of $15,000 - 20,000, plus hoists, beds, commode chairs, vehicle or house modifications, all up costing in excess of $100,000 at times,” says Amanda.

There is also a State-wide carers initiative aimed at contacting carers in rural and regional NSW, plus culturally and linguistically diverse communities including Vietnamese, Chinese, Arabic and, in the future, Italian and Greek. The funds also help support research.

There are about 20 main types of MD all varying in their onset, progression and severity. The most severe is Duchenne MD which affects young males and results in a life expectancy on average of about 20 years. A less severe form is Becker MD which results in a longer life expectancy. Other forms are not as severe but still require the use of an electric wheelchair in most cases. People with MD make up the largest proportion of more than 6,000 people in NSW who are affected by muscle diseases.

Setting up a fundraiser like this does not happen without effort. “In the beginning it’s very hard to remain focused and motivated as there are so many knock backs, but once you realise not everyone is in a position to help  you can re-focus,” Amanda explains. “Before you do anything you must ask yourself questions about how many people you wish to attract, what kind of venue you’ll need, how you’ll publicise the event and so on. My goal was to attract 50 ladies to the event, I got 75 last year.  I got the word out via my own blog, asking local stores to put up flyers, emailing all my friends in the scrapbooking community and asking local radio to help out.”

To raise money Amanda charges an entry fee, holds raffles, guessing comps, lucky numbers and has workshops taught by Marion Werren and Jen Hall.

Visit Amanda’s blog at
www.newcastlefundraiser.blogspot.com [newcastlefundraiser.blogspot.com]

Email

newcastlefundraiser@hotmail.com

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