Dear Members and Friends, We have had a very interesting couple of months. July was one of our big events for the year with FX Awareness month. The illumination of landmark buildings for FX Awareness day on 22nd was a national and bigger event this year, and the release of the results of the MCRI Fragile X carrier study generated outstanding media coverage of Fragile X. Some sad news. After a successful three years running the medical community awareness program, Katrina Weir has moved on to other professional challenges. I offer Katrina our deepest appreciation and acknowledge her achievements in increasing understanding of Fragile X-associated conditions in the medical community: Strengthening and extending our network of experts and education providers in the areas of health, genetics and intellectual disability. These strong relationships have led to opportunities to raise awareness of FX to many thousands of medical professionals right across the country. Developing materials to increase understanding of Fragile X across a wide audience - including presentations, brochures, magazine articles, online stories, flyers, and videos. Masterminding the complex presentation and networking schedule for Profs Randi and Paul Hagerman in 2015, across Melbourne, Perth and Sydney. Paul and Randi had never been so efficiently & effectively deployed to medical professionals and families in Australia. (and they very much enjoyed their trip!!) The Association’s Annual General Meeting will be held on Sunday 26th November. There are two Board vacancies to be filled. Many thanks to Director Cathy Love who will step down prior to the AGM after 4 years on the Board. I encourage anyone interested in knowing more about what our Board does to contact Wendy Bruce on 1300 394 636. The FXAA Office has a new home. After many years in and around Manly, in Sydney, we’ve relocated to Brookvale, which is nearby and very accessible by car & public transport. Many thanks to Bunnings for donating paint and furniture to spruce up the new office and providing volunteers to help paint! Do drop in if you’re in the neighbourhood! Many thanks to the members who have come forward with fundraising ideas, and have offered to host or take part in events. Cynthia Roberts raised over $8000 in the Sydney City2Surf in August – her best ever fundraising result! Mike & Helen Tozer and their team ran excellent times and raised more than $4,000. Mike attracted lots of media attention by wearing the blue suit, competing in both the City2Surf and the Sydney Marathon! Special thanks to Shane Lyons and Jo Ryan for the very successful fundraiser High Tea in Launceston, which raised $3500 and was a great afternoon. Amazing effort and the second year for lighting up orange for FX in Launceston. And thanks to Katherine Brown, in Adelaide, who organised a movie night in August that was successful in raising $2,000. The Board is focused on our fundraising strategy and the urgency of securing new funding for our continuing operations. We are looking at options to reduce our costs but do not want to impact on the level of support we offer to families. We need to raise an additional $100,000 to replace a grant which ends in a few months. The Board is investigating some potential philanthropic leads but it is an extremely competitive market, so if you can help us help you, please do. Five donors @ $20,000 or 100 donors @ $1,000. Sounds simple! Finally, it is a privilege and a pleasure to host the highly regarded experts Dr Marcia Braden and Dr Jonathan Cohen, who will lead FX information days for us in Brisbane on 1 November and in Hobart on 3 November. Dr Braden and Dr Cohen will also be available for some clinical assessments. For details about clinic places, please contact Wendy. Graham Hook, President, FXAA
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