Australian Centre for Leadership for Women Diversity Awards

On Wednesday night I had the pleasure of attending the Australian Centre for Leadership for Women Diversity Awards in Sydney.

From the website:

"ACLW’s Awards Program commenced in 2006, culminating so far in three national awards for women’s advancement, with more than 60 national recipients being recognised and awarded, including women, men and organisations. This year is ACLW's 10th Anniversary of its Awards Program for women's empowerment. The 2016 Diversity Award refines the spirit of ACLW's Award Program as it seeks to platform in a mainstream forum, recognition for community and organisational initiatives in Australia that value and empower women in Australia who come from diverse backgrounds, and particularly from groups that are marginalised."

Dr Diann Healey Rodgers runs the Australian Centre for Leadership for Women voluntarily and entirely on her own.

We were treated to performances by the Sydney Gay and Lesbian Choir and a troupe of Greek dancers. The presenters included Prue Goward, Christine Forster and the speaker of NSW Parliament House Shelley Hancock who was hilarious.

I was a second place winner in the Disability category. I won because of my work organising the Australian Ichthyosis Meet. The category winner was Women with Disabilities Victoria (who I am doing some work for next week) and the third place winner was South East Centre Against Sexual Assault. Here are the two other category winners - Keran and Dagmar.

Every first place winner made a speech and they wowed the room. From domestic violence support and refugee welcoming to providing child care for women in medical research and climate change research and prevention, the work these women do is so important.

I am so honoured to be recognised in a room full of amazing, accomplished and diverse women truly making a difference In Australia.

A big congratulations to Kyri Fuss for being a co-recipient - one of the 75 beneficiaries of the Australian Ichthyosis Meet. And thanks to the Australian Centre for Leadership for Women for the award, Professor Ingrid Winship for the reference and ongoing support, the Ichthyosis community especially the attendees, the supporters of the Ichthyosis meet who made it happen, my wonderful Adam and parents, Layne Beachley and the Aim for the Stars Foundation, the Awesome Foundation, FIRST and UK Ichthyosis Support Group and my wonderful blog readers and social media followers for helping me along the way. ❤️

In my entry, which Kyri (above) provided a supporting statement for, we both said the meet was something we could have done with when we were young.

Oh and if you think my life is all pretty dresses, fancy meals and glamourous award ceremonies - you'll be pleased to know that I am grounded (literally).

After the awards ceremony at Parliament House, Kyri and I got back to the hotel, I bought some cheese and crackers, and then got changed for bed. As I came out of the bathroom, the heavy door closed on me, making me slip on the carpet and pushing me over. I hit my head, knee, shoulder and bottom. Ouch but laughing. A bit bruised now!

We stayed up til 11 pm raging to This American Life podcast (I fell asleep halfway through the first act).

Ha!

You can read about all the winners here.

 

 

What we learnt at the Australian Ichthyosis meet.

We learnt so much at the Australian Ichthyosis Meet. We learnt from doctors and nurses, but more importantly, from each other. I was struck by how articulate and confident the children were speaking up about what works for them and what they’d like to do next as a part of the Australian Ichthyosis community. I am mindful that we were in the safe space of a function centre at the zoo, and people revealed lots of personal things about themselves - so this is only a very small summary of what was shared.

The first session was a panel discussion featuring a panel of medical specialists: Professor Ingrid Winship (genetics), Dr David Orchard (dermatology) and Nurse Practitioner Emma King (dermatology).They talked a lot about the research that’s been done around Ichthyosis - locally and overseas. I didn’t want them to give false hope and talk ‘cures’ - but Ingrid said they were there to provide ‘hope not hype’. They want patients and parents to manage the condition on a day today basis rather than seeking along term solution. One exciting thing was mention of one blood test that will provide DNA data for many genetic tests - great for us needlephobes (it can be so tough having needles when you’ve got Ichthyosis).

The medical team also talked about minimising infection - they recommended the single use of towels (can you imagine the amount of washing?!), not double dipping into creams - spoon some out and spread it on a plate, or use gloves, before applying to the body (I’ve broken that rule two million times!) and also doing regular bleach or salt baths.

Morning tea was next, and this was a great time for attendees to talk to the medical team some more, and socialise with each other. Friendships were already forming by this time - so good to see!

After morning tea, we did a 45 minute activity, providing peer support in small groups and then with the larger group. This was just wonderful. All suggestions were valued, and when members of the small groups read out responses to the room, applause was given. I was so proud. Our facilitators did a great job if making everyone feel comfortable enough to share their experiences.   

The first question asked was 'How do you feel good about yourself when things get you down?’

Some of the responses included:

• “I wash my hair because I love my hair.”
• “I do things I enjoy.”
• “I spend time with friends”
• “I communicate with people who understand.”
• “I know I am not alone.”

Next up was 'How do you respond when to comments and stares?'

• "When people stare, I just keep walking, but if someone asks if I’m sunburnt, I just tell them I have a skin condition."
• "I smile at the person and tell them I have skin conditions and end the conversation
• “I say 'No see I was born with this skin disorder called Ichthyosis'. Also I ignore these stares. Sometimes the best thing to do is just keep going and ignore it." 
• "I give them a business card with information on it."
• "I be strong and stand up tall. Smile."

The final question was 'What advice would you give to new parents and patients?'

• "Support your child no matter what. Give then the affection/attention they need and understand there will be tough times. Make the most of your good times and shorten the bad ones."
• "Don’t chase a solution."
• "Don’t overreact."
• "Accept the situation – it becomes your normal."
• "Seek psychological help."
• "Know that it does get better." 

Nathalie from Easy Peasy Kids asked these same questions at the play table. I loved this response to comments and stares:"Remember that sometimes people forget their manners, think before they talk and haven’t forgotten to interact properly."

To end, we talked about what attendees would like to see after the Australian Ichthyosis Meet. What is the direction of the Australian Ichthyosis Community?

It was unanimous that people want regular meets -perhaps a national meet every second year, but regional and informal activities are encouraged. We can form a committee to develop the community into a charity. And we can all keep in touch online. I am not sure how long it will take us to develop something formal (I need a rest!) but I will be sure to keep you all informed about the next steps.

And then it was off to the zoo!

One of the mums at the meet - Maria, whose story you might remember from earlier this month, sent me a piece that her nine year old daughter Claudia wrote. She wasn’t directed to write it, she just wanted to express how the meet impacted her brother (Alexander) and her family. Claudia said I could publish a part of it.

"The following day was a special one. The reason for our trip was to meet other people with a skin disorder that my brother has. Its name is Ichthyosis (Ick-the-o-ses). This is the first time anyone has ever organised an Ichthyosis conference in Australia.

On that day, we met other people like my brother, and the great thing was, that they were our age and we made lots of friends, especially Joshua and Lucia and Calista.

We got to have lunch with them and then walked around the zoo with Lucia and Joshua as well as their mums and dads. We saw lots of animals like tigers, zebras, reptiles and a bear that wouldn’t stop beating on the glass.

After the zoo visit we all went to TGIF where the sign said ‘its always Friday at TGIF’. We went with Lucia, Calista and other people from the conference. We had so much fun laughing all night.

We were so sad that we had to leave all our new friends. I would like to thank Carly Findlay for putting the conference together and it was nice to meet her."

This is beautiful. I just loved to read about the perspectives from a sibling. I am so glad everyone felt included.

People said they were so grateful this meet had fun as its focus - rather than being entirely medical based. That is something I felt strongly about. It is so important to build connections like we did on 9 May. The friendships developed were my favourite part of the day.

If you’re looking to connect patients in your community, just do it. Don’t wait, start small and change peoples’ lives. (Soon I will write a blog post about how I organised this.)

Thank you to everyone who attended, who helped out and donated money and products. I am so grateful. 

Stasia from Photo Addix took these photos. She said: "It was truly an amazing day. So many beautiful people in one room. Well done Carly I am so honored to be able to have capture it."

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.

Be social: follow me on Facebook, Twitter and Instagram.

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 Melbourne, TinySuperheroes, 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.

Be social: follow me on Facebook, Twitter and Instagram.

MEDIA RELEASE: Australia's first national Ichthyosis meet. (Peer support meet comes to life at Melbourne Zoo in May)

MEDIA RELEASE

30 April 2015

Peer support meet comes to life at Melbourne Zoo in May

Appearance activist Carly Findlay, in partnership with the Genetic Support Network of Victoria (GSNV), will host the first official Australian Ichthyosis Meet in Melbourne on Saturday 9 May 2015, as part of Ichthyosis Awareness Month.

This event gives adults, children and families affected by Ichthyosis the chance to meet others with this rare skin condition which affects an estimated ten to twenty people in a million.

With 74 people registered to attend, including 23 who have Ichthyosis, the event has certainly been wells-received. One attendee, nine-year old Lucia, is particularly looking forward to the meet because 'it will feel awesome to be in a room with no-one staring at me'.

The organiser, Carly Findlay, explains that because Ichthyosis is such a rare condition, many people who are affected have never met anyone else who could truly understand their condition. Carly herself, as a child, hadn't met anyone else with the rare, severe genetic skin condition. 'I thought I was all alone', said Carly. Her hope is that through attending this first-ever Australian event, friendships will form and self-confidence will grow among attendees.

'People with rare conditions need social support from peers' said Carly. Peer support, through opportunities such as the Australian Ichthyosis Meet, is known to have positive effects on the health of those involved by reducing feelings of isolation and depression, improving their sense of wellbeing, and improving coping skills and behaviours.

For another attendee, 11-year old Alexander, the Australian Ichthyosis Meet is a dream come true. 'Mum has always talked about going to the United States to a conference but now we get to have one here in Australia. I will be able to ask them questions and maybe even help others by sharing how I take care of myself. I would like to ask them how they deal with people’s stares and what it's [going to be] like when I grow up', said Alexander.

The one-day event, to be held at the Melbourne Zoo, includes an informal meet and greet, time to explore the zoo as a group, and dinner. Dermatologists Professor Ingrid Winship and Dr David Orchard will also attend.

Visit carlyfindlay.blogspot.com for updates and more information before and after the event.

Media contact: Carly Findlay

Further reading: Systematic review of peer-support programs for people with cancer. Hoey LM et al. Patient Educ Couns 2008 Mar; 70(3): 315-37 (http://www.ncbi.nlm.nih.gov/pubmed/18191527)

- ends - 

BACKGROUND

What is Ichthyosis?

Ichthyosis is a rare genetic or acquired skin condition affecting an estimated 10-20 individuals per million.

Ichthyosis is characterised by persistently dry, thickened, rough, fish scale skin. There are at least 20 varieties of ichthyosis, including inherited and acquired forms.

People with Ichthyosis have a normal lifespan. However those with very severe Ichthyosis may need to spend several hours each day caring for their skin so they can lead as much of a normal life as possible.

Source: http://dermnetnz.org/scaly/ichthyosis.html

About the organisers

Carly Findlay

Carly Findlay is a Melbourne-based writer, speaker and appearance activist. In 2014 Carly was named as one of Australia's 100 Women of Influence by Westpac and the Australian Financial Review.

Carly is an established online writer, winning several awards for freelance writing and blogging. She shares her story about what it's like to look different, and connects people with Ichthyosis and other visible differences through her activism. She lives a great life with Ichthyosis – enjoying travelling, seeing live music and exploring activism and support for chronic illnesses through social media. She has run the Ichthyosis Awareness Month blog project in May 2013 and 2014 - giving people affected by Ichthyosis a chance to tell their story on her blog. Carly has a Master in Communication. She blogs at carlyfindlay.blogspot.com.

Genetic Support Network of Victoria

The Genetic Support Network Victoria (GSNV) is a vibrant and active organisation committed to promoting the interests and well-being of people affected by genetic conditions. The Network is proud to be associated with a wide range of support groups throughout Victoria and Australia as well as peak professional bodies such as Victorian Clinical Genetics Services.

Assisting individuals and families with the 'human', non clinical side of genetic diagnosis is common place in the day to day activity of GSNV. This includes assisting people with access to services, connecting with others, education, advocacy, support and information. Visit gsnv.org.au for more information.

The most important thing I have learnt since my first blog post post.

A blogging agency asked the question: show us your first blog post, and what have you learnt since then? Such a great question!

This was my first post.

Since that post, I've learnt it's not about how many people visit my blog a day, but the difference I can make to just one person through sharing an authentic, engaging story on my blog.

So many people have told me they read my blog and now have hope for them or their child, that they're no longer alone, and that they feel empowered to tell their story. I've met some amazing people through sharing my story of living with a rare severe skin condition and visible difference.

I've fostered a supportive, inclusive and educated community - and soon I'll be bringing that community from on screen to 'real life' in Australia's first meet for patients and families affected by Ichthyosis. More than 70 people have registered - eager to make friends within the Ichthyosis community. People believe in me because of my blog, and they've donated money and products to support the event. For that I am so grateful.

Thanks to The Awesome Foundation Melbourne for believing in the Australian Ichthyosis Meet to throw it a $1000 grant, and to all of the individual financial donors and to the companies who have provided products for the goodie bags. I can't wait to reveal who has come on board!And thanks to the Ichthyosis patients and families for getting involved, helping out and seeing the importance of a social meet. 

What have you learnt since you started blogging?

Maya is a seven year old who is excited about the Australian Ichthyosis Meet. "I could do with some more friends like my sister."

The Australian Ichthyosis Meet is now at capacity - with 71 patients and family members registered. Sponsors have come on board (I will announce those soon), and many people have donated money - I am so grateful for everyone’s support. Thank you! I am also excited learning about who is attending the event, and have asked some of the attendees to write about why there looking forward to coming.

Maya is a seven year old who is excited about the Australian Ichthyosis Meet. Her little sister has Ichthyosis. On describing her sister, she said "I could do with some more friends like that."

I met Maya’s little sister Matilda when she was just a snuggly five month old. Matilda and her Mum were at the Royal Children’s Hospital in 2013, and I visited them to offer support.

I am so excited they’re coming to the Australian Ichthyosis Meet in May! Maya will be there too - she’s so excited about the meet. Maya wrote a little message about her excitement - she’s a wonderful big sister. So cute! (Note - unlike all other guest posts published on this blog, I didn’t edit Maya’s for spelling and capital letters. I wanted to leave it pure, and I love that her imagination is captured through words.)

"My Name is Maya , i am 7.

when my Mum told me we were planning a trip to melbourne in May , and i was actually going this time . i was exicited, i like the aquarium in melbourne but my mum is not always able to take me when they go to the hospital, incase they get stuck there.

At first i was unsure what an Itchyosis conference was, i know what Itchyosis is my little sister has that , its apart of her.

So i had some questions to ask my mum and she let me read showed me some of Carly's blog post online. Matilda my little sister met Carly when she was a baby. Carly is matilda's friend.

then i understood , i will be able to meet other big sisters like me , who have little sisters or even big sisters or all grown up ones with Itchyosis. I hope there nice , i'll try to be nice.

i hope they will be able to tell me about some of the inside games they play , matilda is a bit sick of our current inside games and i'm running out of idea's.
i've never seen anyone that looks like my little sister , most of the time she just looks wrinkly and red like you've been in the bath too long , but sometimes shes really sick. Most of the time shes really funny. Smart and runs superfast and she eats all my crusts and vegetables when i dont want to eat them.

i could do with some more friends like that.

i am looking forward to comming to Melbourne in May from Tasmania , to meet new friends from Families like ours."

If you would like to donate to the Australian Ichthyosis Meet, you can do so via Go Fund Me. 

Why Lucia wants to attend the Australian Ichthyosis Meet. "It will feel awesome to be in a room with no-one staring at me!"

I have been receiving gorgeous letters from people who are attending the Australian Ichthyosis Meet in May. For many patients and families, this is the first time they have met anyone else with the condition.

Here's a letter from Lucia, who you may remember from the 2013 Ichthyosis Awareness Month project. It both excites and saddens me that she will be in a room with no one else staring at her.

"Hi Carly
I am really excited to come to Melbourne in May to meet people with similar skin conditions. We can talk about the problems we have in common and get some new ideas for our daily care. I am starting to write a list. It will feel awesome to be in a room with no-one staring at me! I hope to make some new friends too.

Love Lucia"

I can't wait to meet Lucia (and admire at her amazing hair in person!), and all the other people who are coming to the meet. So many friendships will be made.

 

The spaces are all booked out now and we've upgraded our space to the zoo!

If you'd like to support the cost of the first ever Australian Ichthyosis Meet, you can donate via GoFundMe. You can also donate books, toys and goodies to giveaway to the attendees - send me an email with your details. All donors of money and goods will receive a public mention on the day, and also on my blog after the day.

 

Thank you so much, your support is truly appreciated.

 

You are invited to the Australian Ichthyosis Meet - May 2015

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!

About the meet:

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.

The day will feature three sessions: an informal meet and greet, a trip to the zoo, and a dinner for those who want to socialise further. Two dermatologists have been confirmed to attend the morning session – Professor Ingrid Winship and Dr David Orchard. A photographer will be present to capture happy memories of the day.

Registration

You can register to attend via EventBrite. Registrations close 1 May 2015. The morning session is free to attend, however there may be a partial or full cost to attend the zoo. 

Fundraising

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.

If you would like to contribute to the fundraising for the event, or know someone who might, donate via gofundme.com/ausichthymeet.

If you attend, you will need to pay for your own transport and accommodation to and in Melbourne, plus the cost of meals and souvenirs at the zoo.

Contact the organiser with questions:

Email Carly Findlay at ausichthyosismeet@gmail.com. 

Thank you for helping to make this event a success. I appreciate your involvement.