First published Sunday 26 May 2013.
Contact Us
To find out any more information about how you can be involved, don't hesitate to contact us.
Email: Helen.Leonard@telethonkids.org.au
Phone: +61 419 956 946 | +61 8 6319 1761
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Rett syndrome is a rare but serious neurological disorder that affects about 1 in 9,000 girls. Even more rarely, boys may be affected.
We aim to share our research findings with families so that they may better understand Rett syndrome and the future for their family.
These resources include the best available evidence about the course of Rett syndrome and its management as well as practical information about family associations, specialist clinical centres and links to relevant websites.
What a fabulous day we had on Sunday at the HBF Run for a Reason in Perth, where Rett syndrome was extremely well represented! The weather was delightful, and the course scenic, providing a great opportunity to raise awareness of Rett syndrome, and allowing family and supporters of the cause to get together for a relaxing and fun morning. The teams had T-shirts made, which turned out fabulous, and I'm sure went a long way to raising awareness of Rett syndrome.
The 'Rett Pack for a Cure' team have raised a whopping $8,475 so far, with the 'Rett syndrome study' team adding an additional $2,010. That is over $10,000 that will go toward the Australian Rett Syndrome Study!! An absolutely amazing achievement for all involved. The fundraising pages will still be available until the end of June, so it's not too late to contribute!
First published Sunday 26 May 2013.
To find out any more information about how you can be involved, don't hesitate to contact us.
Email: Helen.Leonard@telethonkids.org.au
Phone: +61 419 956 946 | +61 8 6319 1761