A little vote for a big cause - Kidspot Voices of 2015 Alumni for the Heart and Lung Transplant Trust of Victoria

(Click to vote)

See those two beautiful ladies either side of me? They're Rebecca and Camille. They're transplant recipients. Generous organ donors gave them new life. Bec had a double lung transplant in September 2012 and Cam had the same in February 2013.

Through the help of the Heart and Lung Transplant Trust (Victoria) Inc (HLTTV), they're able to life a good life - connecting with other transplant recipients, and having access to education and rehabilitation resources. Bec and Cam - and other recipients and families - are members of the HLTTV, ensuring the Trust continues to provide care for future transplant patients and their families.

Here I am with Bec, Cam and Belinda - Belinda's husband had a heart transplant earlier this year and is doing very well.

The HLTTV donated exercise equipment for the Alfred Hosptal rehabilitation gym, refurbished the transplant patient clinic and established a quiet room for patient families. What an awesome cause!

I'm in the running to be named Most Popular Voices of 2015 Alumni, and if I win, I'll get some money for myself, and Kidspot will donate $2500 to HLTTV.

This cause is important to me because it's meant my best friend Cam is alive (and will be my bridesmaid!) and through her I've met Bec and Belinda! Next year, Bec will take part in the Tour De Transplant - a five day, 600 km cycling challenge run by the HLTTV, and Cam regularly takes part in semi marathons. They're tireless campaigners for the Trust - holding regular fundraising events and promoting the cause on social media. Their energy is amazing - and they can do these things because of their transplants.

When I first met Cam, she needed an oxygen tank to breathe. Now she's the busiest woman I know - shopping, exercising, travelling, puppy raising, working, crafting and volunteering for charities - plus bridesmaid duties!

When Bec and I met properly, we shared a dessert - an amazing peach and white chocolate pizza. Look at our faces!

I'm told this money will go a long way at the HLTTV If I win.

Please throw me a vote!

#donatelife (and have the chat).

 

 

Love Your Sister book giveaway plus TedX videos.

It's been such a privilege to cover some of the Love Your Sister journey on my blog.

Samuel Johnson (actor, voiceover artist and all round nice guy) spent one year riding more than 15,000 km on a unicycle. He did it because his sister Connie is dying from breast cancer. It started off as a dare - Connie joked that he should unicycle around Australia, spreading the breast aware message as her legacy. He took on the challenge and raised over more than $1 Million for the Garvan Institute - the money goes towards breast cancer research. Together, Sam and Connie and the Love Your Sister team have raised awareness and money, and touched so many people on their journey.

I remember that Connie's prognosis was not good at the start of the Love Your Sister unicycle trip. Sam's send off was so emotional - no one was sure whether they'd be reunited after a year. But she was. She was there to greet Sam at the finsh line. Love Your Sister has buoyed Connie. And even after the unicycle ride, she's been touring and fundraising with Sam. She's still here.

When the ride finished, Sam made it his mission to make finding a cure for cancer through Love Your Sister his job. He and Connie have worked with Garvan, spoken at TedX (those are below) and met with the Prime Minister - all in the name of cancer research and awareness. It's given him a new lease on life too. I was lucky to be invited to the Love Your Sister homecoming party on the day Sam returned. There was a special interview being filmed with Guy Pearce - and the conversation was raw. The guests were in tears. I think Love Your Sister has not only prolonged Connie's life but saved Sam. Watch that interview here.

Somehow in between working with Garvan, fundraising, film making and Connie's treatment, Samuel and Connie have found time to write a book!

Here's what publisher Hachette has to say about the book:

"In their book, LOVE YOUR SISTER, these two remarkable Australians share their tale, from their childhood, through to the finish line and beyond in this truly unique story. Part memoir, part travel diary, part conversation, LOVE YOUR SISTER is an inspiring and unforgettable book that shows just how far one man will go for his sister."

You can purchase it on Booktopia, Bookworld, or iTunes. A portion of the sales will go to the Garvan Institute.

I'm excited to give a copy away. Tell me what extreme you'd go to to help your sister (or loved one) fight their biggest battle. Competition closes Tuesday 4 November at 5.00 pm.

Donate to Love Your Sister

Watch my video with Samuel

Read about the Llfe Your Sister return

 

 

 

 

 

The SCAR Project. On beauty.

I pinch myself at the opportunities I've had these past few years. It is amazing to be asked to speak or write about what it's like to look difference - to such diverse audiences. On Friday I'm talking on a panel at The SCAR Project in Sydney.

"The National Breast Cancer Foundation (NBCF) is proud to host the Australian premiere of the international exhibition, The SCAR Project, created by fashion photographer David Jay.

The SCAR Project is a series of large scale portraits of young women with breast cancer. The images are unflinching, revealing the raw and honest face of breast cancer. They ask the viewer to reconsider beauty, permanence and the simple but immense power of our daily interactions. Ultimately, The SCAR Project is not about breast cancer, but the human condition itself; the images transcending the disease, illuminating the scars that unite us all."

Here are the details of the session I will be at:

What is Beauty? 19 September, 12.30pm - 2.00pm

Hosted by Eliza O’Hare, Associate Editor at Harper’s BAZAAR and brought to you by Estée Lauder

Exploring different definitions and challenging traditional views of beauty. The discussion will examine how society defines beauty, how beauty is portrayed in the media and the impact this has on society.

RSVP at beauty@nbcf.org.au

Numbers are limited and the session is FREE to attend, with refreshments and food provided.

NOTE: The SCAR Project exhibition is suitable for ages 16 years old and above, at the discretion of parents and guardians

Come along!

I've been thinking a lot about acquired visible difference lately, and the adjustment and grief over losing an appearance one becomes used to. The panellists and I have been asked to talk about our definition of beauty. Here are my thoughts on beauty - you may have read some of this prior, but I wanted to collate some of my thoughts in one small piece:

When I think of beauty, I think of outer appearances and also the mind and heart. Good writing, intelligent thoughts and creativity are as beautiful as a Cupid's bow lip and silky hair. Above all, it's a kind heart that is most beautiful. People get more beautiful the

People don't automatically see the beauty in difference. They stare out of curiosity or confusion or ignorance or disgust. People don't aspire to stand out by their difference - they want to be like the women dancing on MTV or on the covers of magazines. And many young men expect the women they date will look like supermodels. Little girls want to dress and look like Elsa from Frozen - blonde hair and porcelain skin, and a flowing dress. They don't want to look less than a Disney beauty ideal. I wonder if there were more diverse role models in children's cartoons and books, would they be less taken aback by difference, and and more inspired to embrace individuality.

I would like there to be a greater representation of diversity in the media, so we can normalise difference - so that we can see there's beauty in everyone. Body image and diversity is so much more than fat and thin, and it's so good that powerful women in the media like Turia Pitt, Francesca Martinez and Stella Young are bringing diversity into the mainstream. I also think blogging is at the forefront of diversity in the media- showcasing all types of people - their image and stories - and I'm so glad to be a part of this. I'd like girls to know that it is ok to be interested in fashion and taking pride in their appearance even though they have a facial difference or disability. I'd like wider society to see beauty in those who look different.

Lots of people stare at me and ask questions and ridicule. But so many more - the people who matter - see ME.

My love, he's got this joke with me. It's a play on everyone who intrusively asks me about my face.

"What's on your face?", he says.

Then he adds, "Oh it's just beautiful."

And boy do I smile when he says that. I am the luckiest.

I don't need anyone but myself to make me feel happy with my appearance. But it is amazing knowing and seeing how someone else sees me. It's such a joy to love and to be loved. And I love how it shows. This isn't vanity. It's seeing myself as my love sees me. When I see a photo he's taken, I see the beauty he sees in me.

How do you define beauty? Has the definition changed through your life?

The Love Your Sister return

Today could have been a much different day. Connie Johnson's breast cancer prognosis meant she might not have been there to welcome her brother Samuel home as he unicycled into Federation Square.

But she was there and they greeted each other with a hug that the thousands in Federation Square didn't want to end.

Samuel, one of the faces of Love Your Sister, has just completed a unicycle ride around Australia, in the name of breast cancer awareness and raising money for research. He's covered more than 15000 km and raised over 1.4 million Australian dollars for The Garvan Research Institute.

He got people talking about being breast aware. And he kept his promise he made to his sister years ago over a few drinks, and she's continued to fight breast cancer. I believe it was this journey, this amazing cause, that has helped her live.

But Love Your Sister has strengthened both of them. Samuel believes Connie has saved him. On the stage at Federation Square, he said to Connie "You've given me a life I cherish now. I'm going to cherish every day we have left together."

There wasn't a dry eye in Federation Square.

The Garvan Institute has set up a fellowship in Connie's name - a beautiful legacy she will leave.

While the unicycle ride is over, Sam's not giving up. "I'm pissed off" he says, saying he started off being pissed off at the way cancer was robbing his sister's life, but now he's angry on behalf of all the women affected by breast cancer that he's met this last year on the road. "It's tearing families apart", he said. "My job starts on Monday." He wants to continue advocating until his last breath.

You can still donate to Love Your Sister at loveyoursister.org. Follow them on Facebook too, they're doing an amazing job.

Congratulations to everyone involved on the enormous effort.

It's been wonderful to be a part of Love Your Sister promotions since the (public) beginning. I'm so glad Samuel took a chance on me to tell his story through this blog. And I'm so glad I was able to meet Connie one year later at the finishing line. I've seen incredible kindness, strength and determination. These two are true heroes, role models.

As a blogger, it's always great to donate my time and content space to a cause. Bloggers, if there's a charity that resonates with you, don't be afraid to reach out to them and see how you can spread their message.

 

Fundraising update: Wrap Tina With Love.

Overnight the fundraising effort for Tina topped $1000! Our target was $300.

This generosity and kindness has blown me away. So many people have made donations that will go a long way, and so many people have shared Tina's story and link to her donation page.

Thank you for raising funds and awareness. These funds will make an incredible difference to Tina, and I know she will feel loved by the wonderful words and gestures of support.

In the next few days I will write to Tina to ask her exactly what she needs from this money, to ensure she is comfortable.

The treatment (both medically and socially) I have relieved in Australia for my Ichthyosis has been exemplary, and I only wish it was the same around the world. Tina has had a difficult life suffering from Ichthyosis in India, and this fundraiser is the least I can do to make her life a little easier. DeDe has articulated the need to help others less fortunate than ourselves so well - read her blog here.

You can donate to Tina at My Cause.

Thank you all.

 

A cause for you to consider: Wrap Tina With Love - Tina's story continued.

 

A couple of months ago, the beautiful Tina shared her story of living with Ichthyosis in India on my blog. Her story was heartbreaking - and many of you were moved by her words. Here's an excerpt of Tina's story in her own words:

"At the age of 5 all children started to go to school but I could not as the schools never wanted to give admission to a child who was terrible to look at, I don’t remember anyone carry me as a child, or speak kindly. I did not have friends as the mothers used to tell their children to keep away from my as I had a terrible disease and they would get affected. I had lots of problems as the skin used to scale all over from scalp on to my shoulders and arms and I had to hear those unsightly remarks My only friends were the stray cats and dogs and pigeon that I rescued when they were injured. I took solace in these animals, and as I grew up books and music and church was my entertainment. I used to dread going out because of the stares and the rude remarks. I was always and still considered an outcast by some. There are people who will not touch anything that I touch. They will not eat when I offer and will not like to offer food to me. Parents do not like me to hold their babies. In fact many used to say I have leprosy. I have friends a few now who are very supportive."

Tina does it tough with her Ichthyosis - it's medically, socially and financially challenging. She has been excluded her whole life and three quarters of her wage goes toward her medical costs. The heat in India is particularly difficult for her condition. She's told me that people are afraid to shake her hands, and wrote that mothers wouldn't let her play with other children because they thought she had leprosy. Ichthyosis is not contagious.

This week, Tina's mother passed away this week after being bedridden with vascular dementia. Her mother raised Tina alone while working as a medical missionary. Tina spent a long time caring for her mother, which placed greater financial strain on Tina. I am so sad for Tina - her mother was her rock.

To lighten her burden a little, I've set up a My Cause page, to raise money to buy Tina a cooling vest and some creams - and send them to India. Please read her story and consider making a donation that you can afford. Donations can be made in any currency.

If you're unable to make a donation, please consider sharing the link to the donation page with your networks. Or you can leave a message of support in a comment below - I will make sure she sees them.

Yesterday I created the My Cause page. (Prior to doing so, my good friend Friday wrote a blog post about Tina - thank you so much, Friday.) I set the cause target for $300. In less than two hours, it exceeded that amount by almost double. To those who have donated, thank you so much for your incredible kindness and generosity. I know that the money you've donated will benefit Tina. She has had a difficult life suffering from Ichthyosis in India, and this fundraiser is the least I can do to make her life a little easier. Ichthyosis is difficult to live with, and I cannot imagine not receiving the support, compassion and financial assistance needed to keep well.

I'll keep you updated about Tina's progress.

Thank you. I am overwhelmed by your generosity.

To Tina - I send you my love and sympathy. I hope we can help you in a small way.

 

[Video] Samuel Johnson gives an update on Love Your Sister

Last Friday I caught up with Samuel Johnson from Love Your Sister while he's spending some time in Melbourne.

You may remember my interview with him earlier in the year before he set off on an epic unicycle ride around Australia, raising money for and awareness of breast cancer. That is 15,000 km and a $1 Million goal. Samuel's sister Connie is dying from breast cancer and Samuel's unicycle trip and activism is one of her wishes.

Samuel has the most incredible spirit, generosity and determination - his commitment to Connie's wish is so admirable.

I've been following his trip on social media and have been in awe at the photography documenting the places he's been to, and the generosity of Australians he's met. I asked him a little about his journey (it's six months since he departed from Federation Square) and what more we can do to help. (Apologies for the sound towards the end - it's been extremely windy in Melbourne and it was very blustery on the day we filmed this interview.)

Samuel and the Love Your Sister crew are in need of food and petrol vouchers - so if you are in a location where he's headed, get in touch with the crew.

Thanks for your time doing this interview, Samuel, and to Emma from Love Your Sister for making it happen!

For more information, updates on Samuel's unicycle journey and to donate, visit Love Your Sister's website, Facebook, Twitter, Tumblr and Instagram.

Tiny Superheroes - Empowering extraordinary kids one cape at a time.

It's easy to feel powerless when you have a chronic illness or disability. Much time is spent having medical treatments and appointments, various therapies and trying to overcome society's curiosity and sometimes cruelty. It's easy to forget that every day, you've got strength in your adversity. That you're a superhero. There's a charity in America that aims to remind children with chronic illnesses and disabilities that they have superhero qualities. The charity is called called Tiny Superheroes and they've been bringing smiles to children's faces since early 2013

I found out about Tiny Superheroes through the Ichthyosis community. Kids in capes kept on popping up on my social media feeds. And my heart melted at the photos. So beautiful! Here's Evan and Bruli playing the piano.

(source)

And Evan flying. The cuteness.

(source)

Robyn from Tiny Superheroes says that the initiative started after reading Blessed By Brenna. She sewed capes for her son and nephew, and her husband suggested that Brenna needs a cape too! Since then, she and the Tiny Superhero sewing team has sewn and donated over 100 capes to little children with illness and disabilities. Robyn says these children with illnesses and disabilities are "Extraordinary TinySuperheroes who exemplify strength and determination as they overcome great adversity."

From the Tiny Superheroes website:

"TinySuperheroes seeks to empower our little ones — one cape at a time. We donate capes to Extraordinary TinySuperheroes who exemplify strength and determination as they overcome great adversity. Once these Extraordinary TinySuperheroes are comfortable in their new capes, we feature them on our blog, in hopes of giving them a voice, their illness or disability a face, and the world the opportunity to stretch."

Below is Lauren and Evan - both with Ichthyosis. Adorable!

I've been so moved by Robyn and her team - the way Tiny Superheroes honours these children is beautiful. Look! Clockwise from left to right: Anthony, Issac and Kenji. (Photos used with permission from Tiny Superheroes.)

I jokingly asked Robyn if I am tiny enough for a cape - at five foot one. And she told me that I absolutely need a cape! The cape arrived in the mail on Saturday :)

And I'm all about poking a bit of fun at myself, especially for a good cause!

It was perfect cape flapping weather! I went to infinity and beyond!

Robyn hasn't only been making and shipping capes to chronically ill and disabled children, she's also sent them to the young survivors of the Boston Marathon bombing.

These small acts of kindness by Tiny Superheroes are making children across the world feel ten feet tall.

You can nominate a Tiny Superhero here.


You can sponsor a cape for a Tiny Superhero here.

 

[Video] Samuel Johnson chats about Love Your Sister

 

Samuel Johnson, one of Australia's most recognisable young actors and voice-over artists, is training eight to nine hours a day on a unicycle. He's resting up where he can, even in steel circles in parks. Because in February, Samuel will embark on a trip around Australia on a unicycle. That's 15,000 km over a year. He's doing it for his sister Connie, who's dying of breast cancer.

Samuel and Connie have set up the Love Your Sister charity to raise awareness about breast cancer and $1 Million for the Garvan Research Foundation and The Cancer Support Group. The unicycle trip is a challenge Connie set for Samuel as her legacy.

Samuel met me for a chat about Love Your Sister, Connie and the 36 inch wheel that will be getting him around Australia. While we kept our chat quite light, the reality of Connie's terminal illness - and the many, many other cancer patients -  is so very sad. It made me reflect on the people in my life who have been touched by cancer.

You can watch our chat below. Mum, Dad - I hope you are watching because I set Samuel a challenge that involves you and haggis...

 

I wanted to see Samuel in action, so he gave me a demo on his unicycle. There were some kids playing in the park and they were so excited to see him cycle.

Samuel has asked me to help him out with promoting Love Your Sister, so look out for some more updates of his journey. I'd love it if you got involved too - promoting and donating where you can. We all have women in our lives who can benefit from Samuel and Connie's mission.

For more information, updates on Samuel's unicycle journey and to donate, visit Love Your Sister's website, Facebook, Twitter and Instagram. 

This space has been volunteered to promote volunteering.

Volunteering is crucial in the community. From parents who help at school fetes, working bees and on canteen duty, blood donors, sports coaches, Girl Guide and Scout leaders, to families who provide respite to parents of children with disabilities, English tutors for migrants, meals on wheels deliverers and charity fund raisers. Volunteering helps people in needs. It enables information and skills to be shared and developed. It helps the community and it helps people grow.

I am a volunteer. I currently volunteer at Grit Media, creating the disability focused TV show No Limits. I used to volunteer as a mentor at the Royal Children's Hospital's Chronic Illness Peer Support (ChIPS) program. I love it! These volunteer positions have taught me skills in leadership, listening and disability awareness, and I have met many people from diverse backgrounds. I have made some close friends too. And the skills learnt volunteering are transferrable to the workplace.

When I put the question "Do you volunteer?" out on Facebook my friends came back with some fantastic stories, and it inspired me.

Cheryl in New York told me, "my focus in life is the care and education of children. Although most of my peers are retired by now (we're in our early 60s) I'm busier than ever, volunteering at Head Start, a government-sponsored preschool in the U.S. I do everything from taking pictures, buying and cataloging books, suppliing dolls, crayons, toys, games, to working one-on-one with needy children. I'm there 4 days out of 5, and on the fifth day I miss it! When I'm there at school I don't think about myself; it's always about the children. When I get home, the stresses can manifest themselves (binge eating, mostly). But I'll be there as long as I have breath in my body."

Jess volunteers in the health sector, while studying for a nursing degree, as well as battling a severe chronic illness. She says: "volunteering does give you a sense of purpose. Due to being chronically Ill, I cannot work, but being able to volunteer when I am up to it makes me feel that I am still productive to society.

I run a social group for Chronically Ill teenage girls in Ballarat, once a month - it is called Slow Cure? No Problem! I am now also president of the Friends of St John Ambulance Ballarat. We raise money, and provide support to St John ambulance. I can't imagine not volunteering."

And Lindy told me:

"Our family volunteers for an Australian foundation called Mercy International' - they have 3 orphanages across Thailand. In a weeks time my husband and I are heading to Thailand to work in the orphanages - this will be my 3rd trip and my husbands first. My husband will finally get to meet our sponsor son of 5 yrs. our daughter (who is 19 and has raised the money herself to make the orphanage mission trip 3times) and I recently held a fundraiser for Mercy to help with the building of a new orphanage for HIV+ children.

We are the lucky ones to have these children in our lives. These children are the 'lucky ones' as they have found their way to Mercy and not ended up in one of the horrid state orphanages. Our sponsor son Toto is HIV+ and our government will not let him in our lucky country - but if it was possible we would have adopted him years ago in a heart beat! I had spinal surgery and eye surgery recently - so unfortunately this trip I will not be helping as physically as I have in the past - painting, cleaning, gardening, digging trenches, etc but there will plenty I can still do. And the kids don't care what we look like, who we are, what we do they just love that we go to spend time with them and help out where ever we can. And when these kids smile any aches and pains we have seem to just melt away. I just can't wait to give Toto the biggest hug ever! Check out 'Mercy International' on Facebook =)

In our local community my husband is president of the best soccer club."

I was so proud to read their stories. Over on my blog's Facebook page, friends told me they take professional photos for individuals and organisations at no cost, volunteer at St Vincent De Paul's and St Kilda Mums.

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In the spirit of volunteering, ten years ago the guys at SEEK volunteered to build a site to find individuals for Australia’s thousands of not-for-profit organisations.

SEEKVolunteer is a site that represents every Australian charity, organisation and community project that requires volunteers to ensure their success. It is a site that places passionate individuals with not-for-profit projects that really needs them.

Since being launched SEEKVolunteer has been responsible for placing thousands of individuals in not-for-profit projects and organisations. Passionate individuals have been connected to the charities that need them, from Red Cross and Oxfam to local people and businesses trying to help their own communities.

The need for volunteers never stops growing. In fact, thousands of Australian not-for- profit organisations need to fill volunteer positions this year. Unfortunately, this ever- growing need is not widely known. We want to get the message out there about the power of volunteering. And demonstrate that anything’s possible when enough people come together with a common goal.

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Do you volunteer? What do you do?