Steve Waugh Foundation

Hi Fiona,

I understand you recently had a 30th birthday- Happy Birthday. I also hear you used this special milestone to selflessly raise $1,115 for the Steve Waugh Foundation! Thank you to you, and your family and friends who got behind you to support the work we do. The public support by people such as yourself is immensely valued and appreciated. I hope you had a great birthday. All the best.

Regards
Steve Waugh AO

What is the Steve Waugh Foundation??

The Steve Waugh Foundation is committed to a coordinated approach to the service, identification, treatment and research of rare diseases to improve the quality of life of children affected by rare diseases (0-25 years of age).

We strive to improve the quality of life for children and families affected by rare diseases.

The rare disease patient is the orphan of the health system, often without diagnosis, without treatment, without research and therefore, without reason to hope.

Families and carers of children with rare diseases experience significant psychological stress due to social isolation, unemployment, diagnostic delays, lack of information and difficulty accessing appropriate health care.

The Steve Waugh Foundation is working to help change things for children with a rare disease by giving hope, providing medicine, equipment and treatment, supporting education and research, partnering with other like agencies and organisations as well as supporting specific projects and programs. The Foundation has already supported over 400 families through generous donations from our Patrons, corporate partners and supporters.

We invite you to join the Steve Waugh Foundation to give our children with a rare disease and their families ‘somewhere to turn’.

Yay! You all rock!

So, what’s next on the fundraising horizon?

Well, it’s just over 2 weeks until the City2Surf. And Mum, Jen and I are part of Team Waugh. I’m not personally fundraising this year, but my brave sister is walking the course with the two kids in the stroller and fundraising for the Steve Waugh Foundation. So, if you wanna send her some love, this is her fundraising link and this is her blog (and this is her little boy). Last year, I ran the City2Surf the day after Ezri was born, so this race may become a family tradition! (I’m running this year again. I’m hoping for a colder morning than last year!)

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Coffee @ Deja Brew

I did it!

A month without caffeine!!!!!!

Hug!!! and huge thanks to Elizabeth for the push.

Y’all wanna sponsor me now?

x


Fiona’s turning 30!

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There’s only so much herbal tea one can drink in a day. So, in search of a milky fix, without caffeine, I’ve headed down the path of cinnamon.

Yum.

So this morning, I’m drinking hot almond milk, with a tsp of brown sugar and a few shakes of cinnamon.

And it’s doing the trick :)


Get your button on my sidebar for June and July by making a donation to the Steve Waugh Foundation! More details in this post :D

(I was sent a couple of cartons of the unsweetened and original Almond Breeze to try out. I think the unsweetened will end up being better for on cereal, but the sweet original one works well with more sugar and cinnamon ;) Though I suppose it didn’t actually NEED the sugar :p)

And with that I’m going dark for the weekend! Seeya Sunday night! xx

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Heyhey

Liam

You bloggers are awesome right?

And like to have ads places?

Well.

Donate at least $10 here (or more)
Email me your link and banner to: phonakins@gmail.com

Then dance! Cos you rule!
(and I’ll put your banner ad on my sidebar)


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Ezri

(ps shoutout to @aBigDumbBaby for sponsoring me for my quest to raise $1000 for the Steve Waugh Foundation for my 30th birthday!!)

(ps you can play SNAKE with the youtube loading symbol….)

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Lava Espresso, Weston

So.

I’m biting the bullet.

Aiming to tick off another Thirty before 30 item.

Elizabeth has dangled the carrot of a $50 donation to the Steve Waugh Foundation if I succeed.

I can do it right? No black tea, or coffees. Til the end of the financial year.

At least I’ve cut out diet coke already!!!

(and the chocolate)

And it’s for a good cause!


I’m aiming to raise $1000 for my 30th birthday for the Steve Waugh Foundation. They help fund things for kids (up to 25) with rare conditions that often slip through funding cracks. Awesome work.

Coffee in Syros

If giving up caffeine helps me get there, then so be it!

(I’m also “going dark” this weekend, when I head to Billabong Retreat!)

(and yes I do realise that this opens me up for challenges for sponsorship xx bring it!)

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Today, the rare day of Feb 29, is World Rare Diseases day.

What IS a rare disease???

  • A rare disease in Australia is defined as one which affects 1 in 10,000 people or less.
  • There are up to 8000 known rare diseases, the majority have a genetic origin.
  • Although each disease is rare, collectively they affect up to 10% of the population.
  • That is up to 2 million Australians of which up to 400,000 children.
  • Rare diseases can be life-threatening or chronically debilitating.
  • Most begin in childhood and continue throughout life.
  • Obtaining a definitive diagnosis is often difficult and delayed, if diagnosed at all.
  • Neurological and intellectual disabilities occur in about half of all cases regardless of disease type and lead to a loss of independence and opportunities.
  • Many rare diseases have no cure

In Australia, the Steve Waugh Foundation is dedicated to supporting those with rare diseases and their families, as these kids with ‘orphan’ diseases often don’t fall under established support and funding services.

Liam's 2nd Birthday Party

Dear little nephew Liam is one of the kids who falls under the umbrella of rare conditions, with his Spondyloepimetaphyseal dysplasia. With something the local therapists have never seen, and the specialists only come across rarely, it can be hard to get answers and to know if you’re on the right track with monitoring of development.

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Awesome Weekend – City2Surf, New Niece, Chilling with Rish – Warning photo flood ahead!!!

August 15, 2011

HUGE weekend. Rish arrived midnight Friday, we went to Newcastle Saturday, and while we were on the F3, I got a text from my brother in law to say they were at the hospital because my niece was on her way!! :) I got dropped off at my parents place, and got to muck around […]

7 comments Read the full post →
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