MAKATON for Parents Evening

Presented by:

Amanda Hartmann & Alanna Mylne

Speech-Language Pathologists

WYNNUM ROAD HEALTH THERAPIES

Monday 11 May 2009

5 – 8 pm

Wynnum North ECDP

405 Tingal Road, Wynnum

Cost: $33 (inc. GST)

Tea, coffee and nibbles provided

This will be an informal event focusing on:

• What is Makaton and who can use it
• Learning some new signs
• Incorporating signs and symbols into your everyday life
• Practical ideas for ‘teaching’ Makaton to your child

Makaton uses a core vocabulary of speech, sign language, symbols and photographs to develop speech and language in children. It can benefit children with speech delays, as well as those with diagnosed disabilities.

More information:

Limited Places – Please call to reserve your place now – PH: 07 3907 0561

On December 20th, 2008, the Wynnum Christmas Carols were held at the Bandstand Park in Wynnum. The Spring Committee who organize the Christmas carols, chose Fragile X as one of the charities they would support at their fantastic carol event.

On the night of the carols, Janine Peate, Paul (my husband), Vince and Kate from the Ulysses Motor Bike Club, and I sold as many raffle tickets as we possibly could! It was lovely to have Kate and Vince on board help us sell raffle tickets at the markets for Fragile X syndrome. We are very appreciative of their kindness and sacrificing their Sunday’s to help us sell raffle tickets.

Garry Tom of the Spring Committee, gave us a lovely surprise. Garry heard about the Fragile X Association, and our need to raise money for research into Fragile X and other Fragile X related projects. Garry thoughtfully took it upon himself to organize his own FX raffle. Garry raffled off some meat trays, generously donated by the butcher’s at Save City in Cannon Hill, and fruit trays kindly donated from Perry’s Fruit Shop in Wynnum Central and from Wondall Road Fruit Barn in Manly West. On the night, Garry raised $216, for the Fragile X Association. It was a marvelous effort from Garry, who had just come out of hospital, after suffering illness from diabetes.

Over the few weeks leading up to Christmas Paul, Kate, Vince and I sold raffle tickets and FX Christmas cards at the Manly markets. In total we sold 185 packs of Christmas cards. With Christmas card sales, the FX raffle, the meat and fruit tray raffle organised by Garry Tom and Kate and Vince’s toy auction we raised a total of $2860.

Special thanks for helping to raise FX awareness goes to:

• The Peate Family – Janine and Greg for helping sell raffle tickets on the night and to their boys Pete (fx) and Geoffrey (fx) who drew the raffle for me, the boys did a wonderful job.
• Vince and Kate from the Ulysses – who helped us sell lots of Christmas cards and raffle tickets at the Manly markets and for organizing their toy auction.
• Barry Myatt Realty – who ran our FX colouring-in competition. Barry was also MC on the night of the Christmas carols, and did an amazing job.
• The Spring Parade Committee – who organise the carols and the spring parade. They are a very special, kind hearted group of individuals, who take time out of their busy schedules to organize fairly large community events. On the night of the Christmas carols, they plugged Fragile X like crazy!
• David – who runs the Manly Creative Markets at Manly Harbour Village
• Steve – Steve’s RC toy’s (from the Manly Creative Markets) donated a remote control Jet ski

Mel Mikkleson and son, Tom,  are featured in a half page spread in the Wynnum Herald’s 7th January Edition – “Tom’s world is a fragile place to be”

Reporter Desiree Duncan says of Mel “A Wynnum mother’s instinct and persistance” led to a “diagnosis, a support group and now she hopes for a clinic”

The article goes on to describe her son, Tom’s, development, his testing and diagnosis of Fragile X Syndrome and some of its more common characteristics. (facial irregularities, developmental delays, anxiety disorders and difficulty controlling emotions, autism and ADHD like symptoms).

Despite how common a condition it is, Mel talks of how Fragile X is largely unknown in the community and shares her concerns on the number of children who may have been misdiagnosed because of this.

Although there is a new adult Fragile X clinic at the Mater Hospital in Brisbane there is as yet no Children’s clinic. Mel and her fellow support group team have been active in helping to raise funds so that this will eventually be possible.

Well done to Mel. This sort of publicity, as well as the other fantastic efforts she has been putting in will help to get Fragile X Syndrome more widely known and more kids will be correctly diagnosed.

Although the whole of the 7th January Edition of the Wynnum Herald is available for viewing online on at the moment, the article itself is not published to the  Herald site. You can view the article  via  PDF copy on our website.

For a review of this event please see:  Review of Qld Christmas Fundraising

Christmas carols, carnival rides, entertainment, food and fireworks are all happening this Saturday at Wynnhum Carols by the Bay, Brisbane, supporting the Fragile X Association Australia.

Festivities start at 3pm with a mini fair, music, dance performances and multicultural refreshments. Activities include children’s rides, amusements, pony rides, facepainting and glowsticks. Santa is even planning on coming along in the evening.

Image julie_g Flickr

Raffle

Proceeds of raffle will go to Fragile X Australia. Mel, Janine, Paul and Greg will be walking around the on the day selling tickets. They will be wearing  black Fragile X Association Shirts.

Prizes

• 1st Prize – IT’S A CLASH OF THE FOOTY CODES!
  An AFL Western Bulldogs shirt signed by 2008 Brownlow winner ADAM COONEY. Donated by the Mikkelsen Family PLUS A Seafood Buffet for 2 at the Bronco’s Leagues Club Kindly Donated by the BRONCO’S LEAGUES CLUB
• 2nd Prize – A Kevin O7 Shirt signed by Prime Minister, KEVIN RUDD,
  PLUS A photo of Kevin Rudd and M P Kerry Rea, signed by KEVIN RUDD –Kindly Donated by M P KERRY REA
• 3rd Prize – A Prepaid Mobile Phone – Kindly Donated by ALLPHONES at the MYER CENTRE
• 4th Prize – A Bronco’s cap signed by Bronco and QLD State of Origin Legend – SHANE WEBCKE Donated by the Mikkelsen Family

Kerry Rea MP for Bonner, Qld kindly organised for Kevin Rudd P.M. to sign the Kevin 07 shirt as well as the signed photo.

Kevin Rudd PM and Kerry Rea MP

We are grateful that Kerry has taken the time to learn about Fragile X syndrome, it’s definitely a positive step towards raising awareness about Fragile X syndrome. Our thanks go to Kerry Rae MP and Kevin Rudd PM.

Many thanks to Adam Cooney for taking time out of his busy schedule to sign the T shirt.

Adam Cooney with Chloe and Tom. Tom has Fragile X Syndrome.

Auction

Redlands Ulysses Motor Bike Club Members Kate and Vince will be auctioning off toys. All proceeds will go towards finding a
cure for Fragile X syndrome and towards helping QLD families to travel from QLD to NSW for the Fragile X Syndrome children’s clinics at the Children’s Hospital, Westmead.

Kate and Vince

A huge thank you to Vince and Kate for helping to fundraise for Fragile X syndrome and for raising awareness about the condition.

Carols By the Bay Details

20 DECEMBER 2008

GEORGE CLAYTON PARK, Cnr. of Wynnum Esplanade and Gordon Pde.

Opens – 3pm

Community Carol singing starts at 7:00pm and Santa will be popping in for a visit.

Raffle draw and Fireworks by “Mr. Fireworks” followed by the Fire Twirlers Fireworks at 8:30PM

Details of mini carnivalm entertainment, food and drinks

Schedule of Events

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

Free One Day Seminar

Brisbane

31st October 2008

Fragile X Syndrome

The QCIDD and Fragile X Association of Australia have arranged for Dr Jonathan Cohen and Rashelle Cohen of Fragile X Alliance to present an overview of Fragile X Syndrome for Health Professionals, Educators and Families. Update yourself on the latest about this important cause of developmental disabilities, ADHD and ASD. All speakers are recognised experts in their field and will cover a wide range of management strategies relevant to developmental disabilities and autism spectrum disorders.

If you are interested please download the flyer for more information.