A note from the CEO's desk
Welcome to 2017 and I hope everyone’s New Years resolutions are still holding strong. My resolution of eating chocolate has been extremely successful thus far and I’m on track for a great year.
Those of you who follow our Facebook page will know that we ended 2016 with a flurry of activity and carried this through to 2017. To recap on 2016, we successfully launched our #StopHDthrough PGD campaign, so please continue to support this by having those you know sign the petition.
I was also invited to attend the National Disability Awards in Canberra which recognizes the contributions made by individuals and organisations to improve the quality of lives of Australians living with a disability. I was privileged to meet Kerri Cassidy (pictured second from right), winner of the Excellence in Justice and Rights Protection Award. Her work initiating clinical trials and funding research has resulted in dramatic improvements to the quality of life of those affected by MS in Australia and across the world.
Whilst I was in Canberra I was also fortunate enough to meet with Federal politicians, including Senator Catryna Bilyk (pictured), to advocate for access to affordable PGD for our community for our #StopHDthroughPGD campaign.
I also managed to accrue some kilometers with road trips to Morwell and Ballarat to raise awareness of HD via community education sessions. I thoroughly enjoy being out on the road, having the opportunity to meet community members directly and indirectly impacted by HD and I look forward to meeting many more throughout the next year. I also enjoyed celebrating Christmas with the staff and residents at Wesley Neurological Support Services. It was a wonderful afternoon, where I had the opportunity to spend quality time with community members and their families.
In October, we successfully hosted our 5th Huntington’s Disease Charity Gala Ball at Zinc at Federation Square. Its growth continues year by year and this year we managed to fundraise over $35,000. Thank you to everyone who so generously contributed. I am looking forward to this year’s ball and hope to see as many of you as possible again in October.
However, if October is too long to wait to be on the dance floor again, then please join us on the 25th of February for our Dance Fitness for Huntington’s (no experience necessary). This is a unique opportunity to link awareness raising with promoting physical, mental and social health. Current research has shown that being active can delay disease progression for those at-risk, gene positive and symptomatic/diagnosed.
Looking ahead into 2017 we have some great events planned, particularly for International HD Awareness Month in May. I look forward to revealing some of these events soon. In the interim, stay connected to us via our website and Facebook page to see what’s happening.
Education session for the Morwell Women's Auxiliary