When I was a child, I hadn’t met anyone else with Ichthyosis. I thought I was all alone. Since I have been blogging, I’ve come to meet many, many people with Ichthyosis – many overseas and a few in Australia. And it’s been wonderful. We’ve been able to share advice, lean on each other in times of difficulties, and offer hope and happiness to individuals and families. We also share common interests outside of our Ichthyosis. I’ve had wonderful experiences meeting these patients and their families.
And I wanted to give this same opportunity to Australians (and anyone who wants to travel to Australia). This idea came to me when I was at Problogger – I wondered how I could organise a meet for my blog community in real life. I am so excited that this is happening!
I’ve partnered with the Genetic Support Network of Victoria (GSNV) to host the first official Australian Ichthyosis Meet – scheduled in Melbourne for Saturday 9 May 2015 in Melbourne, as a part of Ichthyosis Awareness Month. This event will give adults, children and families affected by Ichthyosis the chance to meet others with this rare condition. I hope some strong friendships will form, as well boosting the self confidence of all attendees. And the event will also be showcased on my blog for Ichthyosis Awareness Month.
I am doing some fundraising for the event, to cover the cost of the GSNV staff and photographer, catering and to reduce zoo admission costs and transport for attendees. Any remaning funds will be donated to the Foundation for Ichthyosis and Related Skin Types (FIRST). FIRST supports patients and families affected by Ichthyosis worldwide, as well as funds research into the condition.