It’s been a wonderful thing to be a part of the VCFS and 22q Foundation of NSW. When we were informed of Zachariah’s diagnosis it was a very traumatic and helpless time of our life. After my crying time I then started to seek other parents who faced the same situation. It was a relief to have my first conversation with Melinda Woods and realised that in fact we weren’t alone; there is a whole community out there to connect with.
After some time I very quickly began to recognise that distance from the core group could be a barrier in getting practical help. So I began to look for help locally and found myself educating service providers and other carers about VCFS. I found this to be an exciting challenge and I’d really like to offer some of the ideas and practical ways of making a splash locally.
I always take advantage of awareness week what a great opportunity to really attempt to get the word out there. I always contact the media and press. This could be daunting for some, I recognise that but it’s worth giving it a go. Over the three yrs that I’ve done this, there have been 4 news paper articles and one TV story on WIN News and I always get good feedback from those articles. Even though the TV story was in 2008 I still have people telling me that they saw me on the news and I always pick up a new person affected by VCFS along the way.
I always book a stall at a shopping centre, I usually just pick 2 day’s as it’s quite a commitment to sit there all day. Once again it’s worth it, even if you don’t have conversation with everyone you’re out there and the word and logo VCFS is getting into people’s brains. I also take the brochures to library’s, Doctor Surgery’s or wherever else is appropriate.
Your preschool/ school is also a great resource in getting the word out there, This year the preschool director where Zachy attends suggested that I write a letter to the parents explaining about what VCFS is. I followed up that idea and supplied all the children with a Percy puzzle sticker.
My next step in making a splash here in the Illawarra is to start a support group right here. I’ve so far contacted the genetic clinic at the hospital to see if they’d like to facilitate a start of a VCFS group. In September I shall be meeting up with the Kerry to see how we can organise that. I’m excited about that as one person I can only do so much but as a group you can be so much more effective.
In general and for the rest of the year I find myself constantly educating everybody about VCFS. Never underestimate your knowledge about VCFS, you are the expert and be confident when explaining it to others.