On Friday 31st October, the Fragile X Association of Australia, held our first mobile workshop, with the support of QCIDD, at the Mater Hospital in Brisbane. The seminar was held in Brisbane as we were fortunate to have Dr Jonathan Cohen and Rashelle Cohen, Behavourial Optometrist, staying there that weekend. We took the opportunity to rope them into a workshop!

At the seminar, Jonathan and Rashelle, from the Fragile X Alliance Inc. and Associate Professor Dr Nick Lennox, from QCIDD spoke on Fragile X syndrome. Over 100 people attended and most were from the education sector. This was a great opportunity to be able to increase awareness of Fragile X syndrome in Queensland. We have had fantastic feedback from the attendees and many have asked for more seminars to be held so that colleagues can attend in the future. This was demonstrated by one attendee who wrote: Thank you for your great organization. I knew very little about Fragile X before today, so it was a great opportunity to gain clear, updated information.

Associate Professor Dr Nick Lennox and Dr Jonathan Cohen

The speakers covered most Fragile X areas of concern including Why is FX important, where Dr Cohen described some of the characteristics of Fragile X. He discussed case studies of people with Fragile X syndrome as well as carriers. Jonathan feels that the statistic of 1 in 259 women are carriers is under-represented and that it is closer to 1 in 150. He went on to discuss possible premutation characteristics – anxiety, shyness, social phobia, OCD and depression as well as FXTAS in males and POF (Premature Ovarian Failure) in women. This highlighted the need for Fragile X genetic testing to be carried out more frequently.

Rashelle decided that I would be a good candidate to demonstrate what it is like to have sensory overload and hyper-arousal! It was an incredible experience having excessive noise and lights shone in my face as I was trying to count backwards in 3s from 100. It certainly helped me to understand what it must be like for many with Fragile X . She then discussed methods to overcome, or at least minimize, this experience for people with Fragile X syndrome. I know that many found this session of particular benefit.

Rashelle Cohen and Simone Zaia (FXAA member)

Dr Nick Lennox covered the more generic topic of Adults with Intellectual Disability, Health & Healthcare. We had a few members there with adult children with Fragile X syndrome and this was of great benefit to them as they will now go to their GP’s armed with more knowledge.

On the Saturday, Jonathan and Rashelle invited our members to join them in an informal forum. It was a great opportunity for those that were able to attend to meet other mothers as well as discuss Fragile X issues. It was held at the United Services Club, in Brisbane, as the club was extremely generous in providing a room free to us.

Thank you to Lisa Bridle and Dell Hele from QCIDD for the incredible support that they gave to the Fragile X Association of Australia with the organisation of this, our first seminar. We also appreciate the contribution of Dr Jonathan Cohen, Rashelle Cohen and Dr Nick Lennox.

Jocelyn Selwood