12 May 2015

All about the Australian Ichthyosis Meet. So much friendship, advice and love.

Saturday 9 May was the day of the first Australian Ichthyosis Meet at the Melbourne Zoo. I have been planning it since September 2014 - and it was so wonderful to see it come into fruition after so much hard work. (The meet was open to the whole Australian Ichthyosis community - though it booked out in March.)

We had around 70 attend - and around 20 of those were affected by Ichthyosis. I started small - because it was me organising the majority of the event and I didn’t know the level of interest. But there’s a clear interest - enough for the attendees to keep in touch in a number of ways now. I also wanted it to be financially accessible and so it was no cost for attendees.

I seem to be lost for words. I cannot even describe how amazing the day was. I can’t believe it happened, and I can’t believe it happened so well! What an amazing, moving, inspiring and fun day! Thank you to everyone who came to the meet - especially the helpers. I created an event that I wanted to exist. So proud.

There was so much love for one another on that day - total respect was shown to everyone, and all of our advice and experiences were listened to. And we laughed a lot.

The first guest was Lucia - a girl I've known online for years but had not yet met. The paparazzi went wild for us. 

The day comprised a number of sessions - a panel by doctors, and three activities where people shared their experiences and advice about life with Ichthyosis. The group also discussed what they’d like to see after this day. It was great to see children having the confidence to speak to the audience - each receiving a round of applause and a prize. I learnt so much from these wise young people.

In a future blog post, I will write about what we learnt and the discussion about the direction of the Australian Ichthyosis community.

While these sessions were happening, Nathalie from Easy Peasy Kids and Adam ran the kids’ play table - working through these activities and having fun colouring in, playing with play dough and doing craft and word puzzles. It was there that so many friendships were formed - between children with Ichthyosis and without. It was magic.

One of the most exciting parts of the day for me was seeing the kids with Ichthyosis (big and small!) receive their capes from Tiny Superheroes. Some wore theirs all day. It was so beautiful.

And then we had lunch and went off to the zoo in groups. A 10 year old led our group - I think he’s found his calling as a zoo tour guide. We were so impressed. We saw a few animals, but to be honest, I enjoyed socialising more than animal spotting. 

After the zoo, some of us had dinner at TGI Fridays. The wait staff were so impressive - taking interest in everyone who attended, and making the children feel very special.

The friendship that developed on the day is priceless. It was friendship between child and adult patients, from patient to parent and between parents. I know that everyone’s life has changed for the better.

And it was so important to have a team of medical staff there - not only to impart advice, but to learn from us and see us in a non medical setting.

This meet was something I didn't have as a child. I am so happy to have given children and adults with Ichthyosis, plus their families, the opportunity to meet.

Here is what people have said about the meet:

"Had such a great day meeting new people that are effected by ichthyosis. It was such a great feeling to be in a room where we didnt have anyone staring and wondering what was wrong with chaz. Its was so positive time and enjoyed talkin to some new friends. My hat goes off to you Carly Findlay for such a great day. Ps Chaz loves his special show bag and his special super cape." - Casey
"All because of you. You are an amazing and inspirational person and you organised a perfect meet. It was positively moving to see all the children, young adults and parents interacting and getting along like old friends. It's all because of you and I thank you from the bottom of my heart ❤️❤️❤️" - Maria 
"Today has been an exhausting and wonderful day. I've met so many great people and been inspired by the kids (who also have ichthyosis) who are so outgoing and positive. Thankyou so much - it was everything I could have hoped for." - Kyri 
"A big thank you to Carly Findlay for all of her hard work in preparation for today's meet. It was great to meet other's who have ichthyosis, and to be surrounded by people without stares, pointing or comments being made. Bree and I had a great day!" - Kristy 
"Hi Carly,We would like to extend our gratitude to you for putting together an amazing day on Saturday, I had no idea what to expect but my whole family came away from that day with our hearts filled with so many emotions. We have certainly made some new friends. It was so good for jake to talk to people who are going through something that only you can understand, I may be with him 24/7 but still don't understand what it's like for Jake, listening to him share his thoughts and opinions was humbling. I do hope we meet again, you are an incredible person with incredible people that support you, I just hope Jake feels the same way about us!! Thanks again for giving my boy the opportunity to attend, we will never forget it." - Amber
"I allowed us an extra day in the hope of Joshua forming a friendship and having the option to spend more time with them - that hope came to life in the adorable form of Alex and his gorgeous family. So blessed." - Kandice 

"One word.......AMAZING!!!...I cried today when I was leaving, not because I was sad but because of the importance of the whole event, I was looking at all the kids lovely faces & the parents too - it was relief for the parents I think, finally meeting other people who just "knew" how special our lives are!" - Eleanor 
"The best day of my life!" - Calista
"Thanks again so much Carly for organizing this wonderful get together, it has meant so much to not only the children but the parents as well. I just can't thank you enough."- Caroline
"Had a lovely morning helping out at the Australian Ichthyosis Meet. So many wonderful families sharing stories of support and working towards increasing awareness.I loved seeing the huge grins on the kids' faces as they walked into a room where no one would ask them rude questions or judge them because their skin looks different." - Nicole
"Both Rog and I are the proudest parents today.....Carly Findlay excelled at organising the whole meet and to see the happy faces where the kids said....."nobody will be staring and there are others like me" made it all the more special.....the volunteers were just brilliant too...It was a day I would love to remember for the rest of my life. Can't explain the pride both Rog and I felt....She is a hero to all of them including the parents." - my Mum
"Not often I miss my football (round ball) for anything but today was special. So proud of My Girl & of the people that came from NZ, WA, SA, Qld, NSW & Vic. The children were amazing. Some moving moments too. I enjoyed being with the kids when we toured the zoo. There’s nothing that compares with the smiling face of a child with a chronic illness & today I saw many smiling faces. Adults too!. R." - my Dad

I am so grateful that blogging and social media has put me in touch with all of these families and individuals, and for Darren Rowse for inspiring me to bring this community together in person. This really is social media for social good. Darren said: "So excited to see this photo! Well done Carly!"
I was so excited to have Olympus AU on board for the Australian Ichthyosis Meet! They do amazing work with bloggers and I wanted to partner with them for this event. ‪#‎OlympusLovesBloggers‬

I have hope that everyone with Ichthyosis and other visible differences can love themselves - that they can see their own beauty.

I asked Olympus to give away a camera at the meet to promote positive body image and diverse beauty. They came on board three weeks ago, giving away a selfie camera to one lucky attendee. The selfie camera is water and dust proof - perfect for people with Ichthyosis. They also gave me a camera, which I used to take pics on the day.

Campbell (centre), who has Ichthyosis, won the camera on Saturday. I'm so happy for him! His mum sent me photos of him taking pics with his new camera (we charged it so he could use it on the day!)

A big thank you to the following people and companies who donated their time, products and money to support the day:

Jodie and Rob from Guest Ready for facilitating, Nathalie from Easy Peasy Kids for being the play supervisor, Stasia from PhotoAddix for the official photography, Keri and Erin from Genetic Support Network of Victoria, Nicole from Champagne and Chips, Professor Ingrid Winship, Doctor David Orchard and Nurse Practitioner Emma King from Melbourne Health, Adam for putting up with my bossiness, making the blackboard, doing all the heavy lifting and being king of the kids, my parents for helping pack the goodie bags, fundraising and sharing their experiences, and the Melbourne Zoo (especially Compass Group) for the great venue.

And: Awesome MelbourneTinySuperheroes, Olympus, Madwoman Foundation, Your Name Here Promotions, MadMan Entertainment, Sukin-Australian Natural Skincare, MooGoo Skin Care, Random House Books, Invicium Print Management, KeyPharm, LifeLike Touring, Lego, Collins Square Social Club, Ethical Nutrients, Lisa Cox, Marilyn Cardinal, CurlyPops Tracey Hassell, plus all the financial donors via Go Fund Me.I am so grateful for your support. 

The products we could not fit into the gift bags will go to charity. Some have already been dropped off at the Royal Children's Hospital and I will take another load to a different charity. $500 of the donation money has gone to FIRST.

More photos and part two coming soon. 

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

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  1. Hi, I am an aunty to Campbell (who has Ichthyosis and won the Olympus camera), just want to say thankyou for organising this day, you have done an amazing job and its nice that Campbell now knows other kids with the same condition as him. I know his mum (my sister) will be glad to know other parents who have kids with Ichthyosis so they can share info and ideas on treatment. Well done Carly!

  2. I loved reading this blog. It makes me happy and i want it re-live that day again. Carly you should feel prouder than proud with your effort. i loved how there was no need to explain about a rare skin condition and it was more about sharing our experiences and giving each other support. As I read everyone's comments i smiled has it made me happy to know we all feel the same.

  3. Carly you are such an inspiration! There is so much to love about this. I love that there are great things that come out of the internet, that you can use it to raise awareness and to bring people together. I'm so pleased the day went off without a hitch and that so many companies were willing to get behind you for the success of the day. It looks like everyone had such an amazing, special, empowering day, all thanks to you. I sense that this is just the beginning of great things. Awesome work Carly. You're a fantastic role model for those kids. :)

  4. I had all the feelings watching the children bond and begin life long friendships. You are a superstar x

  5. So brilliant Carly! Congratulations on organising such an amazing day. It looks like everyone benefited from it and like you said the friendships and connections made will be amazing. #soproudofyou

  6. Congratulations on organising it all Carly- looks like everyone had a wonderful time and made great connections :)

  7. Carly you really give a lot of time, love and energy back to society. The world needs more Carly's!!


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