In November the Fragile X Association of Australia are hosting Fragile X Update seminars in Melbourne, Sydney and Brisbane.  Professor Randi Hagerman and Louise Gane from the M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute in UC Davis in America  will present the latest information on developments in treatment of Fragile X syndrome as well as what is happening in research into Fragile X syndrome. Topics covered will include behavioural and interventional issues for the person with Fragile X; health issues for the carrier; educational, new treatments and advances in research.  Professor Hagerman will also cover all types of clinical involvement in premutation and full mutation individuals and all types of treatment with emphasis on  targeted treatments.

Download the seminar registration form for more information.

Seminar Registration Form

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Good luck to all those who are raising funds for Fragile X Association Australia in the Sydney City2Surf which takes place this Sunday, August 9th.  Participants will be either walking, running or jogging the 14 km from Hyde Park to Bondi Beach. Thank you all for your fundraising efforts; with $3545 pledged to date.  It is not too late to donate. You are able to either donate through Everyday Hero – to one of the individuals listed below or directly via our Association page

  After the success of last year’s fundraising, the NSW team are again organising a Fragile X City to Surf team this year. Last year we were in the top 10 fundraisers and raised over $8000. This was a great achievement,so lets see what we can do in 2009! Getting involved in this event on August 9th would be a great opportunity to raise funds as well as providing an enjoyable (hopefully sunny) occasion for all involved.

If you are interested in being part of the team you will need to register in the City to Surf . Additionally, you can create your very own fundraising account as part of the Everyday Hero organisation.  Remember to put in the team password of cgk174 on the next page after creating your own page.  Go to Everyday Hero and register. 

After creating an account you can see the team’s participants and watch  fundraising figures grow as more kind people donate.  Through forwarding your fundraising webpage to your friends, colleagues and families they can donate a chosen amount to sponsor you in the run, from $5 to $500, every dollar raised is an excellent accomplishment in itself.

When you register we will also send you one of great Fragile X syndrome t-shirts  to wear on the run.  Last year’s team made a big impression with these black t-shirts. Just contact Christine or phone Jocelyn on 1300 394 636.

Our Queensland team are also having an active fundraising occasion, the Bridge to Brisbane on the 30th August 2009 .

Mel is also organising a Fragile X team to enter this event which will see an anticipated  40,000 participants of all ages and fitness levels take part in Queensland’s biggest annual fun run.  You don’t need to be an elite sportsman to join in on the 5km course, just run or walk your way to the finish line.

Please contact Mel Mikkelsen  if you are interested in promoting Fragile X awareness in this way and also help us to raise funds to support families affected by Fragile X syndrome. 

South Australia has also fielded a team in the City-Bay fun run on the 20th September. Kimberly and Mark Scott are running to raise awareness in South Australia.  You can support them by going to their Everyday Hero webpage to sponsor Kimberly.

The NSW Department of Ageing, Disability and Home Care (DADHC) has released a discussion paper titled “New Directions for respite services in NSW”. which broadly outlines the direction DADHC intends to take to reform and expand respite services in the state. DADHC invites comment and feedback from people with a disability, their carers and families, advocates and service providers.

The paper discusses the delivery of and access to disability respite services, the type of services provided, where they are delivered and the development of new respite services. It talks of :

• The purpose of respite
• The principles that underpin and guide the provision and delivery of respite services
• The current respite service system
• Other services that give carers a break
• Why the need to change
• Feedback from families and advocates
• Results of Research

Based on client feedback and research, the discussion paper proposes that the reform of respite care will be based on:

• the expansion of respite services and the development of new service models in response to unmet need;
• giving individuals greater control and choice in the services they receive;
• streamlining access to services; and
• building the capacity of the service system.

Research indicating who most need respite services has identified priority groups of carers. These are

• Carers of people with challenging behaviours and severe disabilities
• Young carers
• Older parent carers
• Hidden carers – carers who may not identify with the word `carer’.
• Aboriginal and Culturally and Linguistically Diverse (CALD) carers

This initiative is part of

• “Stronger Together - A new direction for disability services in NSW 2006-2016″ the NSW government’s plan to deliver better services for people with a disability and their families. The plan provides an additional $1 billion funding over the first five years.
• The NSW Carers Action Plan 2007 ­- 2012 which
  outlines the NSW Government’s commitment to the state’s 750,000 carers over its first five years. This plan recognizes:
  • Carers are recognised, respected and valued.
  • Hidden carers are identified and supported.
  • Services for carers and the people they care for are improved.
  • Carers are partners in care.
  • Carers are supported to combine caring and work

The New Directions for respite services in NSW discussion paper invites feedback from the community, until 26 June 2009, about the proposed new directions. The discussion paper is available for in download – pdf format or from the link on the DADHC’s website at www.dadhc.nsw.gov.au. A number of questions have been set for discussion:

• Priority groups of carers
  • What difference does respite make to you and your family?
  • What types of respite services have you used?
  • What ones have helped you the most? Why?
  • What types of respite services does your family need?
  • Have you faced any barriers in accessing respite?
  • Are respite services available at the best times for you?
  • When do you and your family need respite?
  • Are there any other types of respite services you would like to see provided?
• Expanding services and developing new service models in response to unmet need
  • Do you know of any other service models that are operating well in
    other jurisdictions that we should consider piloting in NSW?
  • In what ways can we improve our existing services models?
• Older Parent Carers
  • What types of respite or other services are needed for older carers?
  • How can respite services for older carers be improved?
• People with challenging behaviours and high support needs
  • How can respite services be improved so that these clients can access them?
  • How can services be delivered to meet individual need?
  • What services are needed for these client groups?
  • How can these respite services be integrated with other services?
  • How can respite services be delivered for high support and complex
    health care needs in regional and remote areas?
• Giving individuals greater choice and control in the services they receive
  • What degree of choice and control do families want?
  • In what ways can flexible respite be more flexible to suit individual needs?
  • What other activities could be provided by flexible respite services?
  • How can service providers work together to provide the right mix and balance of flexible respite activities?
  • In what ways can flexible respite services support working carers?
  • Would the provision of more tailored flexible activities reduce the need for some families to utilise centre-based respite?
• Streamlining access to services
  • How can access to centre based respite be improved?
  • How can access to other respite services be improved?
• Building the capacity of the service system
  • In what ways can DADHC support the ongoing training needs of the
    NGO sector in relation to respite, particularly surrounding the service
    provision for clients with complex needs?
  • What types of specific training are needed for respite staff?

If you wish to submit your answers to these questions, after reading the discussion paper, you can post them to:

Respite Directorate
NSW Department of Ageing, Disability and Home Care
Level 5, 83 Clarence Street SYDNEY NSW 2000

Alternatively your feedback can be emailed to respite@dadhc.nsw.gov.au

Our family day picnic on Sunday, 5th April, was a great success, with many families attending. Thank you to the families that came and made it such a fun day.

Despite the cloudy morning threatening rain, the sun shone for our sausage sizzle and we had a great spot near the water at Putney Park. There were plenty of activities to watch and participate in, which included several helicopters flying over, a few dragon boats in the bay and an intense game of cricket!

It was an opportunity to meet new people and put faces to voices on the phone. It is always a pleasure to see our fragile x kids get along well together and enjoy themselves. As one mum said: “It was lovely to meet so many other families with such a great turn out and to meet their special people. It is amazing how different and diversely it (Fragile X) affects individuals and one thing still shines through, just how special they are and their caring families.”

Christine

Making the Pizzas

We had a great roll-up for the pizza/fishing day (quasi Christmas function) with two current family members attending for the first time.  Unfortunately, the weather was not the best, windy and rainy and clearing in time for our departure!   Tim had fired up the pizza oven well in advance and Robyn had been busy making the bases all morning, prior to our arrival.  Some of the toppings were awesome and even Gordon Ramsey would have been more than impressed!   As it would have been impossible to fish from the jetty Robyn was very innovative with a bucket and fishing line on the deck, in order to find a winner of the magnificent fishing trophy.   David Cox-Taylor was the well deserved recipient.   The day was a great success.

Thanks Tim and Robyn

The prize winner!

In our latest newsletter is a page on Fragile X Awareness Day, held on July 22nd every year. Many of our members supported the Day with fundraising and other events but the efforts of two members should be noted.  Margaret Tappert, a Taree grandmother of Fragile X Syndrome children, contacted her local media and managed to have a great article published in the Manning River Times.  Thank you Margaret.

Michael and Heather Hart decided to increase awareness by having a Fragile X presentation and invited local professionals. They had a successful morning with many professionals invited.  The speech & language pathologist, Tracey Ellaby, gave a full presentation explaining how speech and language affects Fragile X children and the techniques used to enhance their ability.  Dr Mary Varughese, Grafton Hospital’s paediatrician, gave a talk on what Fragile X Syndrome means and how it can affect their lives.  Joshua’s and Jarrod’s school teachers, Melanie Pitt and Michelle McDonagh, from their support units at Grafton Public School, also assisted in answering questions from the public and explaining how they teach the boys and the techniques that work best for them.

The Salvation Army Church assisted the Harts with many of the ladies helping to prepare and serve the morning tea.  They also expressed concern for the family and wanted to understand how they could best communicate with the boys. Clarence Valley Community Programs (a respite organisation) also wanted to understand the syndrome better.

Last, but not least, Michael gave a great in-depth presentation from, how you get Fragile X Syndrome and the scientific facts, to where we are today and what it means for Joshua and Jarrod.

The Harts wonderful friend/helper/ABA therapist also expressed her knowledge and what she has learnt about ABA and how it has helped Jarrod become the boy he is today.

Heather and Michael would like to thank all those that assisted us in making the Fragile X Awareness morning a success.

Downloads of talks can be obtained from:

http://www.mixstatics.com.au/FXAwarenessDay2008.ppt

http://www.mixstatics.com.au/FragileXSyndrome_SpeechLanguageTherapy.ppt