Spring Newsletter 2017
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PRESIDENT'S GREETING

Hi Everyone,

It has been a busy start to the year with preparations for Undiagnosed Children's Awareness Day (UCAD). This year we are holding events in Victoria, NSW and QLD. Our goal is to hold events in every state but we have focused on the states with the biggest membership for this year. A big thank you to Dani McLennan for hosting NSW UCAD and Megan Firsten for hosting QLD UCAD. We would love it if as many SWAN members as possible could make it to a UCAD event. Please click on the event pictures below for more details.

We were pleased to be able to provide a submission in regards to the National Health Genomics Policy Framework. You can read our submission on our website. The final Framework will be submitted to the Australian Health Ministers’ Council for endorsement mid-2017 and will provide clear policies and guidelines around genomics over the next few years.

Wishing everyone a happy Undiagnosed Children's Awareness Day, please help us to raise awareness of undiagnosed genetic conditions within our community.

Warm regards


Heather Renton (SWAN President)
        

Croxton School Playground 
Cnr Woolhouse St & Beavers Road, Northcote, VIC
10.00am - 2.00pm    
Food, entertainment, activities and more!

Playground Precinct

Roma Street Parkland
Brisbane, QLD
10.00am - 12..00pm

Light refreshments provided
Please r.s.v.p. to Megan:
qld_rep@swanaus.com.au
Yamble Reserve
Quarry Road
Ryde, NSW

10.00am - 12.00pm  
Ligh
t refreshments provided
Please r.s.v.p. to Dani:
info@swanaus.com.au
DIARY DATES
March 2017
18 March - Undiagnosed Children's Awareness Day
VIC, NSW & QLD Events (see above flyers for details)


April 2017
Friday, 28 April
Victoria - Parent Dinner
Venue to be confirmed and details coming soon.

Grandparents Gathering
Date and venue to be confirmed


May 2017
NDIS presentation
Date and venue to be confirmed
COMMUNITY CHOICE RAFFLE TICKETS
SWAN is participating in the 2017 People's Choice Community Lottery. Tickets are available via hard copy ticket books or online. If you would like to sell some raffle books to raise money for SWAN Australia then please let Heather know - T: 0404 280 441 or E: president@swanaus.com.au Tickets can also be purchased online at People's Choice Lottery - Syndromes Without A Name 
Tickets cost $2.00 each and SWAN gets to keep the full ticket price of every ticket sold. There are some great prizes with over 150 prizes to be won.

Thanks in advance for supporting our fundraising event. 
INTRODUCING MEGAN FIRSTEN OUR QLD REPRESENTATIVE

Hi everyone, I am Megan from Redlands in Queensland and as you can see I have three great kids (though two are taller than me now), Frances, 16 years, Sam, 14 years and my little SWAN, Leo who was 2 in January. I used to work in retail in women's clothing but since having my last child I have now become a full time disability carer and don't plan to return to work for the moment but that may change when Leo goes to school. Leo has global delays, and a seizure disorder characterised by epileptic encephalopathy, unresponsive focal seizures and infantile spasms. On his best day he is about 3 months developmentally and he loves to kick things and play with his activity gym. He eats orally and he loves his food - sweets especially.  We aren't sure about his vision and how compromised it is by his brain activity but he loves to listen to music and people chatting to one another. I look forward to helping SWAN make its mark up her in Queensland and meeting some lovely families along the way.

Ed's note:
Thanks for the introduction Megan. We look forward to you hosting our Brisbane Undiagnosed Children's Awareness Day (UCAD). If you are intending to go to UCAD and have not had a chance to email Megan yet, then please do so at qld_rep@swanaus.com.au as we are now planning to put on a light morning tea. 
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