July 2012 Newsletter PDF

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"No disease is rare when it affects someone you love"

National Organisation
for Rare Diseases


SMILE to join forces with Variety -
'The Children's Charity'

For more than seven years now, SMILE has been helping the families of children with a rare disease or condition. Over that time, we have:

  • Helped more than 1200 families financially through our Family Relief Program
  • Supported vital research into rare diseases both in Australia and internationally
  • Established a new case management service especially for families affected by rare disease
  • Played a vital role in advocacy, raising awareness and understanding of the impact of rare diseases in Australia.

We are incredibly proud of what we have achieved and acknowledge that it is only with your support that this has been possible. That’s why I am delighted to share with you some exciting news about the future of the SMILE Foundation.

SMILE is proud to be joining forces with Variety – 'The Children’s Charity'.

This move will provide ongoing sustainability and growth opportunities for this important work. We are also pleased to say that SMILE’s CEO, Tam Johnston, has been appointed as the new CEO of Variety NSW. With Tam at the helm, we are confident that the future of SMILE, in its new home, is assured.

Variety’s mission is to empower all Australian children who are sick, disadvantaged or have special needs to live, laugh and learn – a mission that dovetails beautifully with SMILE’s own reason for being.

I’d like to thank our new friends at Variety for their genuine interest in extending their already successful work with children with a rare disease. We are delighted to be working with this very impressive team, who have such a heart for children.

The Board of the SMILE Foundation will continue to be involved and we would value your continued support for children with a rare disease or condition. This change will be implemented early in the New Year, and we will keep you informed throughout the process. Information will also be available at smilefoundation.com.au or via our Facebook page. For the time being, all SMILE’s services are operating as usual.

Finally, a very big thank you to all of those who have made SMILE’s work possible so far. We could never have done it without you. Thank you.

Best wishes for the final weeks of 2013 – and here’s to a fantastic year of evolution for the SMILE Foundation in 2014.

Yours sincerely

SMILE Foundation Board of Directors

Dr Jonny Taitz
Professor Elizabeth Elliot
Helen Hamilton-James
Robert Williams
Kellie Wogas
Ben Braysich
Denis Tracey
Benita Kam

SMILE lends a hand


Shelby Cassar's first few months of life seemed just like any other baby's. Her parents, Lucy and Michael, had all the usual hopes, fears and expectations for their first child. And while there were the usual "first time parent" visits to the doctor, there was nothing to indicate the trial their young daughter was about to go through.

Shelby was four and half months when she went into seizure. As a result, Shelby was rapidly admitted to hospital. "We went into hospital in May," said Lucy, "and we ended up staying for four months." Shelby had experienced kidney failure as a result of a rare condition called Congenital Nephrotic Syndrome. "She was put on dialysis and a waitlist for a kidney transplant," said Lucy and while Shelby was in hospital "she developed a respiratory infection and was put on life support. She was in Intensive Care Twice."

The seizure was the start of Lucy and Michael's nightmarish journey with their young daughter. "I've cried a million tears. It's not fair when you see your child go through such a horrible time, being pricked and poked every day."

Lucy was already suffering from post-natal depression and Shelby's admission to hospital coincided with the end of her maternity leave payments. Adding to the pressure, Michael - a contract worker - had no income while he was at his child's bedside. With mounting bills and mortgage repayments, the family's burden threatened to overwhelm them. Fortunately, a social worker alerted Lucy and Michael to the Smile Foundation Grant.

"We are just so thankful (for the Smile Foundation Grant)" said Lucy. "It has been such a hard time for us that anything would have helped."

Smile Foundation CEO, Tam Johnston, said "We are so proud to have provided more than 1000 Family Relief Grants to families like the Cassars, whose children have a rare disease or condition.

"We find that even a small amount of help goes a long way for families facing difficult times."

Now, Lucy says the family is adjusting to "a new kind of normal. Shelby is a really happy baby. You can see she's a loved child." Although Shelby has to be on dialysis 12 hours a day, when her mother comes in each morning and takes her off the machine "she just smiles and is so happy." Despite the terrible strain the family has been under this year, Lucy's pride, happiness and hope is obvious when talking about her little girl; "She's going to be a comedian, just like her dad."

Merry Xmas from the SMILE Foundation

Harrison and his Mum pay
Santa a visit.

Kieran is so happy with his new iPad!

"The use of the iPad in class has greatly managed his fine motor muscle fatigue and has allowed him to concentrate on retaining phoneme and sight word knowledge. Although Kieran is still struggling in some areas, managing his fatigue has allowed him to make progress over the last semester and it has been a joy to see Kieran improve and take pride in his work".  – Kieran’s teacher

SMILE Foundation Calms Rheece’s
Climbing Pressure


Rheece Clenton with his mum Michelle, and brothers Joshua and Jaye.

For 15 years and counting, Rheece Clenton has been a 1 in 100,000. Diagnosed with Idiopathic Intracranial Hypertension, Rheece struggles with constant pressure in his brain leaving him with a multitude of symptoms. Even now, Rheece recently braved through six surgeries over the past three months. “He is such a fighter. He’s never complained; not even once.”

Caring for Rheece and his two siblings, Joshua and Jaye, has left mother Michelle only able to work a few hours per week, placing significant financial strain on the family. “It’s such a great help having a team to aid us through this battle.”

The family relies heavily on payments from Centrelink. With bills becoming overdue, the SMILE Foundation provided a generous grant to relieve pressure for this fighting family.

Last year, Charlotte Dawson appeared on The Apprentice Australia and alerted Michelle of the SMILE Foundation, a team working every day to help kids around Australia battling rare diseases. “From there it was instant. I immediately contacted the SMILE Foundation and the help I received was unbelievably gracious.”

The SMILE Foundation has provided more than 1000 Family Relief Grants to families around Australia struggling with stories similar to Rheece. It was a breath of fresh air the moment the family received the grant from SMILE. “It’s been a pretty rough year for Rheece,” Michelle bravely says. “He’s just been through so much, and we are hoping he’s on his road to recovery.”

“I’m definitely an advocate for making people aware that help is out there. It’s good to make the public aware that there are foundations like SMILE out there and I wish that Australia knew more about it.”

“I try to get people to help raise money and to donate to charities like SMILE because it really does help in the best way possible,” Michelle positively states. The family stay strong on the road to recovery and Michelle remains confident that things are now looking up.

The SMILE Foundation is always willing to help in these crucial times when medical crises align with financial struggles. “There’s always help out there and I wish that people knew more about these little but remarkable blessings.”

Smile Foundation Helps Talitha Stand Tall

At three years of age, Talitha Powell is “physically like a two month old baby in a three year old body.” Her struggle to come into the world left Talitha without oxygen for 25 minutes resulting in significant medical and physical needs. Talitha has Cerebral Palsy, epilepsy, hearing and visual impairment and, last year she was diagnosed with a form of Muscular Dystrophy. Despite these difficulties, Talitha’s mother, Lotta, describes her as “quite a happy girl.” “She is not completely shut off,” said Lotta. “She is very determined, she knows what she wants.”

Talitha’s high needs mean that Lotta is unable to work. And as a single parent, Lotta is particularly strained when additional funds are required to improve life for Talitha. Early this year, SMILE Foundation was able to provide a Family Relief Grant to Lotta enabling her to purchase a standing frame for Talitha with the aim of improving her contracture management.

Lotta says that Talitha now spends up to 2 ½ hours a day standing and she is happy to describe the benefits to both Talitha and herself. Lotta believes the standing frame has already had “all over benefits” for Talitha. “She had no use of her legs before,” said Lotta. “Her legs were like two straws. They have some muscles now.” As a result of using the frame “she has discovered her feet,” while previously, she wouldn’t have been aware of them.

Lotta says there have been “massive health benefits” to having the frame. Talitha’s condition means “she can’t swallow and now her breathing is much better,” said Lotta. Perhaps the best testimony to this is the time spent in hospital. ”Last year, Talitha was in intensive care for 3 ½ months,” said Lotta. This year she has been in for less than 2 weeks. From her new, upright position Talitha also benefits from a greater level of visual stimulation. “We have a much better life quality,” said Lotta. “She can participate and she’s more curious.”

The SMILE Foundation has now provided more than 1000 Family Relief Grants to families like the Powells, whose children have a rare disease or condition. SMILE Foundation Grants help families pay for immediate essential items at a time when a medical crisis has evolved into a financial one, and a helping hand is needed. These benefits are best summed up by Lotta in describing the benefit brought about by the grant. “(The standing frame) is definitely the best piece of equipment in the house.”

(NOTE: in a thank you letter to SMILE, Lotta wrote; “I also wanted to say a massive thank you to you for your contribution to Talitha's standing frame and for making our lives that much better!”)



Rare Disease Day

Rare Disease Day

Rare Disease Day

World Rare Disease Day (Australia) 2012 song

SMILE's BBQ at Parliament House,
advocating for rare diseases
1st November 2012

Lyndall Stewart and Ian Dickson




Smile Team

Dan Gordon runs the Blackmores Sydney Half Marathon for SMILE, Sunday 16th September 2012. Well done Dan!

Smile Team

Research Australia Philanthropy Conference 13-14 August 2012. Jeremy Wright - MS Research Australlia, Lyndall Stewart - SMILE Foundation, Eric D'Indy - Westmead Research Institute.
Smile Team

Run for SMILE team members smiling post City to Surf race, Bondi Beach 12 August

Chiswick Luncheon, Monday 4th June 2012

Chiswick  Luncheon

Chiswick  Luncheon

Chiswick  Luncheon

Chiswick  Luncheon

Chiswick  Luncheon

Daniel Solomon accepts a Moriah College donation to SMILE, Friday 8th June 2012

Moriah Donation

Mums and Bubs Morning Tea, Thursday 31st May




Run for SMILE breakfast with Pat Farmer Sunday
6th May 2012





Paul Almond, Run for SMILE team member, SMH Half Marathon, Sunday 20 May


Stephen Ball runs the Noosa Half Marathon for SMILE - Sunday, 6th May 2012


Rare Diseases Luncheon Briefing, Parliament House Thursday 22 March 2012


Wagga Wagga SMILE grant recipients Chris and Carol Harmer, and their children Emily, Lauren and Tom with their local member Mr Michael McCormack MP.




Daniel Solomon crossing the Atacama Desert, Chile
Thursday, 8 March 2012

World Rare Disease Day

Wednesday, 29th February 2012
Martin Place, Sydney


Members of the SMILE team,
Prof Elizabeth Elliott AM, Evie Smith, Oliver Satomi and Sharonne Antonir.


SMILE Ambassador, Tracy Mann and members of the Village Performing Arts Centre.


SMILE Ambassador, Lisa Forrest with Grant and Kobi.


World Rare Disease Day, Wednesday 29th February 2012
Steve Waugh AO, Sharonne Antonir and Prof Elizabeth Elloitt AM Sky News Studio, Sydney



Saturday, 25th February 2012, Manly Wharf Hotel
SMILE celebrating International Rare Disease Day with the VCFS 22q11 Foundation & Fabry Support Group


SMILE’S Director of Community Relations, Evie Smith, received a $5,000 cheque from Veolia’s Dhaval Joshi on behalf of the staff at the Kurnell Desalination Plant.

18th January 2012 - SMILE AMBASSADOR, CHARLOTTE DAWSON,Contestant on Celebrity Apprentice, raising funds and awareness for SMILE.

Myer Cheque Presentation

Dr Jonny Taitz and Ms Lyndall Stewart were honoured to receive a $50,000 grant from the Myer Stores Community Fund on behalf of the SMILE Foundation which will go towards its Family Relief Program.

Myer Cheque Presentation

Left to Right: Wendy Marshall, Director, MSCF - Campbell Paine, Director, MSCF - Dr Jonny Taitz, Chair, SMILE Foundation - Lyndall Stewart , CEO, SMILE Foundation - John Hawker, Chairman and Director, MSCF - Louise Tebbutt, Director, MSCF

SMILE Foundation helps its 500th family

16 December 2011, Sydney - The SMILE Foundation is proud to announce that it has provided much needed financial assistance to its 500th family. SMILE Foundation is an Australian charity focused solely on rare diseases and provides grants to families in need to help cover medical expenses and other costs associated with the challenges of raising a child with a rare disease.

A family in Doonside are the 500th family to receive assistance from the SMILE Foundation through the Family Relief Program. Three year old Mitchell Gorman suffers from Combined Immunodeficiency, which means that Mitchell’s immune system doesn’t function properly. In his short life he has already undergone a bone marrow transplant and a heart operation, which caused him to have a stroke.

To assist in his recovery, his mother Katrina had to relocate from Brisbane to find a hospital that could accommodate his rehabilitation needs. Katrina’s social worker put her in touch with the SMILE Foundation and she was able to put her grant towards mounting living expenses and purchasing a special pram for Mitchell. Katrina says the assistance has been an enormous help to her family, especially at this time of year.

“The grant has been a lifesaver for us and has really helped us get through an extremely difficult time in our lives,” said Katrina.

An estimated 1.2 million Australians live with unique, rare and often recently identified genetic conditions that go largely under the radar of the health system. The SMILE Foundation has been helping Australian families cope with the challenges of raising a child with a rare disease since its launch in 2007, and today represents an important milestone for the foundation in providing assistance to families across the nation.

SMILE Foundation Director, Community Relations, Evie Smith, is delighted with how far the Family Relief Program has come since its inception.

“I am so proud that we have been able to help our 500th family through SMILE’s Family Relief Program. It is indeed very rewarding to know that only three years ago, we were just getting started and with such incredible generosity from our sponsors and the community, we are really making a difference to children suffering from rare diseases.”

CEO of SMILE Foundation, Lyndall Stewart , said “this is such an important landmark for SMILE. Reaching 500 families not only demonstrates the kindness and generosity of our donors, but also shows the potential of what we can achieve for the next 500 families and beyond.”

There are approximately 9000 rare diseases affecting around 400,000 Australian children. Many of these diseases are chronic, life threatening, and are associated with significant disability. The psychological and emotional strain on families is significant, and many experience financial difficulties due to the high medical costs associated with their child’s condition.


Saturday 17th September, 2011 marked the Homecoming event of the Xstrata Cycle for SMILE. After 80 long and challenging days of highs and lows, these six incredible cyclists made it! Hundreds watched and cheered as the team cycled into Centennial Park with huge smiles on their faces. Chair of the SMILE Foundation, Dr Jonny Taitz welcomed the team and thanked all our sponsors, volunteers, and support crew.

The Hon Tony Abbott MP rode in with the cyclists and commended their huge efforts and the importance of supporting the SMILE Foundation. The Xstrata Cycle for SMILE raised an incredible $1.2 million which will go towards helping more Australian families whose children suffer from rare diseases as well as much needed funds for vital research into rare medical conditions.

SMILE Ambassadors Adam Williams and Charlotte Dawson with
SMILE grant recipient Renee at the Homecoming for the Xstrata
Cycle for SMILE.

The Padstow Bowling Snooker Club recently held their Christmas in July function in honour of the SMILE Foundation. The dinner was hugely successful and was attended by over 200 guests who were entertained by the music, comedy and wonderful impersonations of the band Frogs on Toast. A big thanks goes to Barry Selberg, President of the Club, Belinda Delacour and her family for all their support and tireless efforts and to all the guests who attended and helped raise nearly $8,000 for SMILE.


Belinda and Chris enjoying the evening

Members of the SMILE team travelled to Brisbane to catch up with the cyclists as they passed through the capital and attended an afternoon tea, the first en route event of the Xstrata Cycle for SMILE.

Guest of honour Professor Ian Frazer, former Australian of the Year and Patron of the SMILE Foundation, shared his expert knowledge of rare diseases with the guests. Other guest speakers included Mr Reinhold Schmidt, Chief Operating Officer, Xstrata and Mr Peter Ward, General Manager QLD, Lend Lease.

We were fortunate to meet some of the families that SMILE has helped through our Family Relief Program and the event was generously hosted by Lend Lease at one of their construction sites in the CBD. The cyclists mingled and chatted with the guests before they went back to their campsite to rest up before the next day’s big ride.



Full article at www.news.com.au

Tony Abbott launches charity bike ride

AN 80-day charity bicycle ride around Australia is tempting, Federal Opposition Leader Tony Abbott says, but he won't satisfy those who would like to see him out of political action.

"I dare say that I feel like a bit of a fraud because I am not cycling across Australia," Mr Abbott said at the launch of the riding event today in Sydney. "Some would perhaps would like me to cycle right across Australia and remove myself from the daily political cycle for 80 days but I'm not going to do that." Mr Abbott launched Xstrata's Cycle for SMILE campaign, which has raised $948,000 even before the cyclists embarked on their 15,700km journey.

"I've got to say that if I'd raised almost a million dollars before I'd started, I probably would never go on the bike in the first place," he said. Money raised will benefit the SMILE Foundation, which supports children with rare diseases and their families. "I'm a former health minister," Mr Abbott said. "I have seen to the extent that a policymaker can, the heartache that families go through when their children suffer from very rare diseases."

Mr Abbott praised the team of six cycling friends who created the charity ride which will traverse 15,700km over 80 days. Xstrata is the primary sponsor of the event and had company representatives at this morning's launch. About 200 people gathered at Sydney's Barangaroo site for speeches, canapes and the official start of the the charity ride. Mr Abbott led the team on his own road bicycle but departed the ride at Chatswood, on Sydney's north shore. Other riders who joined the launch were also expected to travel a short distance of the total journey.

Veolia Water, operators of Sydney’s Desalination Plant have a site safety initiative where they set KPI’s and a nominated registered charity is rewarded financially if the targets are met. This year Veolia Water staff at the Plant nominated to support the works of the SMILE Foundation and will donate any funds received from reaching the targets to the charity.

Veolia Water

Xstrata Cycle for Smile, 2011

On 30th June 2011, a team of six athletes will set off to cycle around Australia. Covering more than five times the distance of the Tour de France, the journey will take the team around mainland Australia, from Sydney to Cairns, across to Darwin, on to Perth, Adelaide and Melbourne, with the finish line in Sydney. The Xstrata Cycle for SMILE team, Chris McLeod, Dudley Hoskin, Michael Humphries, James Voltz, David Hatzidis and Travis Shields will challenge themselves to their physical and mental limits while promoting awareness and raising much needed funds for the SMILE Foundation. Leaving families and working life behind, this heroic endeavour will cover 15,700km averaging a staggering 230km per day over 80 days.





International Rare Disease Day Cocktail Party

On 24th February 2011 a Cocktail Party/Fundraising Event was held at a private waterfront home in Sydney to mark International Rare Disease Day. This event was a huge success with the well-known ex-Olympic swimmer and SMILE Ambassador Lisa Forrest as the guest speaker. Lisa shared her personal experiences as a professional swimmer with the captivated audience. Ilan Kidron, the lead singer of the chart-topping band the Potbelleez, topped off the night with a rare performance. Ilan, a proud Ambassador of SMILE, entertained the guests as they indulged in delicious canapés and cocktails making the night an even greater success.

International Rare Disease Day

International Rare Disease Day falls on February 28th and is an important date in the SMILE Foundation’s calendar as it raises much needed awareness for rare diseases around Australia and internationally. This year the SMILE Foundation joined other like-minded groups including the Steve Waugh Foundation, the Australian Paediatric Surveillance Unit, The Association of Genetic Support of Australasia and various parent organizations for a morning tea at the iconic Sydney Opera House. Guests included families who SMILE has supported and an enjoyable day was had by all. This was a momentous event for rare diseases as there was much media attention which allowed the country to see how important our cause is.

Sydney Gala Dinner

Sydney Gala Dinner

On 17 March 2011 the Xstrata Cycle for SMILE was launched in Sydney to a sold-out dinner with over 630 guests. Celebrity hairdresser and SMILE Ambassador Joh Bailey emceed the event and kept the audience thoroughly entertained. The night’s success was further enhanced by the inspiring guest of honour, Alan Jones AM who spoke about his life experiences and the true importance of SMILE’S role in the community. The evening continued into the wee hours as the crowd hit the dance floor with a guest performance from the Hoodoo Gurus. The event was  a huge success, raising $250,000 for the SMILE Foundation as well as introducing the six incredible cyclists to the audience.