RARE DISEASE DAY 2013
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SMILE's BBQ at Parliament House,
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Dan Gordon runs the Blackmores Sydney Half Marathon for SMILE, Sunday 16th September 2012. Well done Dan! |
 Research Australia Philanthropy Conference 13-14 August 2012. Jeremy Wright - MS Research Australlia, Lyndall Stewart - SMILE Foundation, Eric D'Indy - Westmead Research Institute. |
 Run for SMILE team members smiling post City to Surf race, Bondi Beach 12 August |
Chiswick Luncheon,
Monday 4th June 2012
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Daniel Solomon accepts a Moriah College donation to SMILE, Friday 8th June 2012
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Mums and Bubs Morning Tea, Thursday 31st May
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Run for SMILE breakfast
with Pat Farmer Sunday
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Paul Almond, Run for SMILE team member, SMH Half Marathon, Sunday 20 May
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| Stephen Ball runs the Noosa Half Marathon for SMILE -
Sunday, 6th May 2012
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| 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.
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Daniel Solomon crossing the Atacama Desert, Chile |
World Rare Disease Day
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Saturday, 25th February 2012, Manly Wharf Hotel |
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 PresentationDr 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.
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| 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. |
THE XSTRATA CYCLE FOR SMILE TEAM RETURNS HOME 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.
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| 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.
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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.
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Full article at www.news.com.au 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.
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| 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.
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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 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. |
t 02 9409 4860 |
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"No disease is rare when it affects someone you love"
National Organisation
for Rare Diseases
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