FREE ONE DAY SEMINAR

Shepparton

Friday 1st April 2011

Fragile X Syndrome

The Fragile X Association have organised for the Fragile X Alliance team, led by Dr Jonathan Cohen, to provide an overview of Fragile  X syndrome.  This free workshop is open to health professionals, educators and families and carers of people affected with Fragile X syndrome.

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 Shepparton Seminar Flyer for more details and the booking form.

Fragile X Family & Friends Fun Day

Sunday November 7th 12 mid-day

At: Werribee Park, Enter at Gate 2 near Victorian State Rose Garden. There are BBQ, & rotundas located there.

What to Bring: A picnic rug, some food for yourself & family. A sausage sizzle will be provided.

Things to Do: Chat, play a game of cricket or Frisbee, share a sausage and a joke. There is a free guided tour of the mansion at 2pm for those interested. (You cannot pre book but if you book when you first get to the mansion you should be fine as the tour is for 25 people).

RSVP:  To Sarah Jones by November 5th 2010
Email: sarahvjones@bigpond.com or call 0428 204 449.

How to get there: Get to Werribee Park on the Princes Freeway (M1) from Melbourne en route to Geelong, Great Ocean Road and Twelve Apostles. Take the Duncans Road turn off from the Princes Freeway (M1) and enter at Gate 2.

Public Transport: A bus service runs from Flinders Street Railway Station to Werribee station on Sunday. For information on public transport services, visit Metlink on www.metlinkmelbourne.com.au

Werribee Park Shuttle Service: The Werribee Park Shuttle Service operates daily return trips from the Victorian Arts Center to Werribee Park. For further information and bookings phone (03) 9748 5094 or see www.werribeeparkshuttle.com.au

Park Information including map: http://www.parkweb.vic.gov.au/resources05/05_1224.pdf

Looking forward to seeing you there!

Fragile X teams in 4 city fun runs!

• Run Melbourne July 18, 2010,: to date we have 4 participants in RunMelbourne on Sunday July 18.  Jannine Davey, Kelly Amore, Sarah Donahue and Brendan Fitzgerald. You can sponsor them through the Everyday Hero website:  

  http://runmelbourne.everydayhero.com.au/

• City2Surf August 8 2010: we have a team running in the City2Surf on Sunday August 8. If you are interested in being part of the team you will need to register in the City2Surf http://city2surf.com.au/. You can be part of the fundraising by creating your own fundraising account. Register on http://www.everydayhero.com.au/Fragile_X_2010 and click on Join this team in the top right hand corner of the fundraising page. You then create your own fundraising page and follow the prompts – the team password is ‘fxteam’.  It is a wonderful opportunity to meet other fragile X families and be part of the general atmosphere that the City 2 Surf creates.   At the conclusion, the Kellehers will run the usual BBQ (this is a fun occasion especially for our FX kids) at their home.  

•  Bridge to Brisbane August 29, 2010: The Bridge to Brisbane is on Sunday 29 August and we will be having a team.  

• City-Bay September 19, 2010:  The Adelaide City-Bay is on Sunday September 19 and there will be Fragile X  team.

We will be updating this post for the Brisbane and Adelaide fun runs once the teams have registered.

Free One Day Workshop

Hobart

Friday 12th March 2010

Fragile X Syndrome

The Fragile X Association, through the sponsorship of the Fred Archer Charitable Trust managed by Trust Company Ltd, have organised for the Fragile X Alliance team, led by Dr Jonathan Cohen, to provide an overview of Fragile  X syndrome.  This free workshop is open to health professionals, educators and families and carers of people affected with Fragile X syndrome.

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 Hobart Fragile X Workshop flyer for more information and to register.

Wynnum Carols by the Bay are being held on  December 19th from 3pm till 9pm at Wynnum Esplanade (George Clayton Park Wynnum), Brisbane, Qld.

Thanks to the Wynnum Spring Festival Association, proceeds from the raffles on the night will be donated to The Fragile X Association of Australia. Some of our members will be selling tickets on the night so please come down and say g’day.

The event kicks off at 3.00pm with a mini carnival, food, drinks and entertainment. The Community Carol singing will begin at 7.00pm and the evening ends with fireworks starting at 8.30pm.

Monday 19th October marks the start of Carers Week 2009. Carers Day 2009 is on Tuesday 20th October. Carers Week is aimed at celebrating and acknowledging the vital role carers play in our society whilst giving carers an opportunity to get together to share support and information..

Carers Australia CEO, Joan Hughes, recently launched a new Carers Week Website . There you can find details of the events that are taking place in your state throughout the week as well as participate in various forums which give you the opportunity to share your experiences and have your say. Events vary from state to state and include talks, morning/afternoon teas, luncheons, and various types of entertainment and relaxation sessions.

Carers Week 2009 is an initiative of Carers Australia. You can find out more about the services provided by Carers Australia on the: Carers Australia and Young Carers.

The National Fragile X Foundation has been producing audio webcasts covering various aspects of Fragile X. They are available to listen to from their website on the Prior Audio Webcasts page

Topics to date::

• “Thriving Not Just Surviving: Family Self-Care” with Diane Simon Smith, M.P.H., MA, M.F.T. ,  Carolyn Krull Toennessen, Aerospace Industry Project Manager and Jayne Dixon-Weber, NFXF Support Services Coordinator.
• “Let’s Get Going: Toileting Ideas” with Karen Riley Ph.D. and Cindi Rogers
• “Coping with and Adapting to the FXS Diagnosis” with Brenda Finucane MS, CGC and Joe Garera, Parent and Leader of the Greater Cincinnati & Nth. Kentucky Resource Group
• “Educating Teachers and Students about Fragile X; Why it’s Important and How to do it” – Arlene Cohen and Lisa Kelley, parents of children with fragile X syndrome, share their experiences and techniques
• “ABCs of FXS: Steps for New and Improved Behaviors” with Fragile X specialist, Karen Riley, PhD
• “Fragile X Syndrome: Treatment of Difficult Cases,” – a three-hour webcast broadcast from Children’s Hospital Denver on July 20, 2007

If you want to be kept informed of upcoming webcasts as well as receiving other news from the NFXF please sign up for their email newsletter.