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GSNV Bits & Pieces
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                          OCTOBER 2013

In this edition:

  • From the team
  • Support group news
  • In the media
  • Conferences, seminars, workshops
  • Community
  • Seeking contact
  • GSNV calendar
Welcome to the latest edition of the GSNV E-News Bulletin 'Bits and Pieces'. 

Thank you to all of our members who attended our recent AGM and once again showed their support of the work we do.  We are most pleased with the newest recruits to our committee and will in the coming weeks announce the composition of our Executive and Committee line up for 2013/2014.  It is important to us that we maintain consumer participation and representation on our committee in order that we develop strategic priorities and objectives relevant to all Victorians impacted by a genetic condition.  The diverse opinions and perspectives represented at our monthly meetings provide the true context to our organisation and ensure that we remain true to our vision and mission. 

There is still time to enlist your support and volunteerism - If you are interested in becoming a GSNV committee member please contact info@gsnv.org.au  for more information.

In the weeks ahead the GSNV will be seeking your opinion and feedback on how we can deliver a better service.  In the interest of supporting all stakeholders in genetic health; families and individuals impacted by a genetic condition, support groups, health professionals and service providers, we are serious about continuous improvement and ensuring we are on target with our programs.  Please look out for our future surveys and use the opportunity to have your say and opinion on what we deliver and raise on our agenda. 

In 2014 the GSNV will be working very hard to improve our financial status and acquire further income to expand our programs and business development.  In the current challenging economic climate, we too are charged with the responsibility of planning for long term sustainability and viability.  Securing competitive income, generating membership dues and encouraging donations are a priority in the months ahead.  Please help us by renewing your membership and/or considering a donation. Please go to www.gsnv.org.au for more information.

We remind support groups and carers that the GSNV is currently scoping interest and numbers for our Peer Support Training.  We aim to facilitate a session in early December 2013 but placements are limited.  Please contact info@gsnv.org.au if you wish to secure a place. Peer Support Training is free if you are a paid financial member of the GSNV.  For non paid members, a fee will apply.  Please not that fees are to recover our costs only.

Carers Week in October


The 13th -19th October marked Carers Week.  This occasion  celebrates the contribution of Australia’s 2.6 million family carers.  See the Carers Victoria website for a list of activities hosted throughout Victoria.

Cystic Fibrosis Victoria: Consumers' perspectives on carrier screening


Around 1 in 30 Australians carry a fault in the gene that can cause cystic fibrosis (CF). Population carrier screening for couples who are planning pregnancy or are early in pregnancy has been available since 2005. A recent research study conducted through the Murdoch Childrens Research Institute has found that few women and couples planning a pregnancy are routinely made aware of the availability of carrier screening for CF, which is currently only available in the private sector. Although Cystic Fibrosis Victoria (CFV) appreciates the diversity of members' perspectives on carrier screening, CFV's position supports all Victorians being made aware of the availability of this testing. 

Sources: 
  • http://www.mcri.edu.au/news/2013/october/the-future-in-your-genes/
  • Seminar: Partnerships in screening program development: offering population-based carrier screening for Cystic Fibrosis, October 4th 2013, MCRI

Deakin University raises money for Down Syndrome Victoria


The Deakin University Commerce Alumni Annual Ball, held recently, chose Down Syndrome Victoria (DSV) to be the recipient of the funds raised. $6,368 was raised to go towards DSV programs such as Club21.

Source: Down Syndrome Victoria Facebook page

Australian Disorders of the Corpus Callosum 


Australian Disorders of the Corpus Callosum (AUSDOCC) is a vibrant new support group offering practical and emotional support for those living with a disorder of the corpus callosum. AUSDOCC is excited to be progressing rapidly in the genetic support sector. The recent announcement of NHMRC funding awarded to leading experts A/Prof David Amor, Dr Rick Leventer, A/Prof Paul Lockhart and Prof Martin Delatycki will be put toward determining the genetic control of Corpus Callosum development. 

AUSDOCC has also launched a great new brochure. Contact us for a copy!

Source: http://ausdocc.org.au/
http://www.nhmrc.gov.au/_files_nhmrc/file/grants/funding/2013/project_grants_outcomes_2014_131023.pdf

Facioscapulohumeral Muscular Dystrophy (FSHD): Save our Smile campaign


FSHD is raising awareness and funds for research through the Save Our Smile campaign. This initiative was launched in 2011 and has since raised $200,000.  Help support FSHD to reach their goal of $100,000 this year by becoming a Save our Smile team member, donating directly to the team, or contacting FSHD for more info.

Launch of New Community Research for Disorders of Sex Development

Researchers at University of Queensland, Prince Henry’s Institute, and Murdoch Children’s Research Institute are helping raise community awareness and understanding of disorders of sexual development with a new website designed to provide scientific information to assist patients and their families as well as the general community, clinicians and researchers. 

The website can be visited at: www.dsdgenetics.org

Source: Human Genetics Society of Australia Newsletter 17th Oct 2013

Australian Institute of Health and Welfare Report


The Australian Institute of Health and Welfare (AIHW) released a report last month for health expenditure in 2011-2012. The report shows health spending was estimated to be $140.2 billion in 2011-12, up from $132.6 billion in 2010-11 and from $82.9 billion 10 years earlier in 2001-02 (after adjusting for inflation). Public hospital spending was the biggest component of health expenditure in 2011-12, accounting for $42.0 billion.

You can view the media release and full report online.

Source: http://www.aihw.gov.au/media-release-detail/?id=60129544701

Attitudes, perceptions and misconceptions about miscarriage


A recent study from Montefiore Medical Center and the Albert Einstein College of Medicine of Yeshiva University surveyed over 1000 men and women in the USA to assess attitudes and perceptions about miscarriage.

While the majority (60-80 percent) of miscarriages are due to chromosomal abnormalities, survey respondents perceived  stress or lifting a heavy object as the most common causes. A surprising number of respondents (23%) incorrectly assumed that a miscarriage may be caused solely by the woman not wanting the pregnancy.

The researchers have suggested the need for education to reduce stigma and to help couples experiencing early pregnancy loss feel less isolated.

Source: http://www.medicalnewstoday.com/releases/267608.php

Resources for women or couples who have experienced early-pregnancy loss:

Webinar for women diagnosed with a BRCA gene fault


The Cancer Council of Victoria hosted a webinar for women making decisions after being given a BRCA gene fault diagnosis.  The webinar covers implications for family planning and fertility, body image, and preventative action.

Three women also shared their personal stories regarding their individual decision making processes.

You can listen to the webinar and access the related resources at the Cancer Council website.

Making It Possible! Workshop for Parents


The Association for Children with a Disability (ACD) is running two workshops in the Gippsland region for parents/primary carers of children (0-18) with a disability.

All families want their children to live happy, fulfilling lives with choices, purpose and friendship.  If you want to take the lead in planning, developing and achieving goals for your child with a disability (0-18) and family, then this workshop is for you!

Build on the strengths and skills you already have as a parent to better identify, plan and achieve goals for your child and family. 

Presenters, Diane McCarthy and Gina McAdam have many years of experience working in ACD's Parent Support Team and are parents of a person with a disability so they do understand issues from a family perspective.
 

See the flyer here.

 

Upcoming Making it Possible workshops in Victoria

Gippsland Region:
Bairnsdale - 30 October 2013
Taralgon 31 October 2013

Eastern Region:
Upwey - 13 November 2013


See the ACD website for more details.

Upcoming Annual General Meetings:



You are invited to attend the Chronic Illness Alliance Annual General Meeting (AGM) on November 19th.


Hear guest speakers present on 'Chronic Illness and the Environment' and 'The challenge of antibiotic resistance: implications for the environment and people with chronic illness'.

Other AGMs:
  • Children with Disability Australia: Friday 29 November 2013, info@cda.org.au or 9482 1130 or 1800 222 660 (rural & interstate callers)
  • Thalassaemia Australia: Tuesday 26 November,  see the flyer here.
The full details are available on the GSNV events page.

Symposium of Inherited Renal Disease


Friday 29 and Saturday 30 November 2013, Royal Melbourne Hospital

This event brings together those with an interest in the genetic basis of renal disease to establish coordinated efforts to advance genetic discoveries and provide an up to date review of inherited renal diseases, diagnosis and management.

See the GSNV events page for full details including a link to the program and how to RSVP.

NDIS updates


Formerly launched as 'DisabilityCare', the National Disability Insurance Scheme (NDIS) has reverted to the name NDIS, as of September 20th 2013. The National Disability Insurance Agency  looks forward to working with the new government and the Assistant Minister for Social Services, Senator Mitch Fifield.

Source: Message from the CEO David Bowen, NDIS News, Issue 3, September 2013

The Productivity Commission, supported by the Mental Health Council of Australia (MHCA) has recommended that psychosocial disability, often associated with mental illness, should be included in the scheme. It will take time and collaborative effort from the government and MHCA to ensure those with psychosocial disability are included fairly in the NDIS.

Source: http://www.theaustralian.com.au/national-affairs/opinion/mental-health-cant-miss-out/story-e6frgd0x-1226733819328

Little People, Big Lives


A new book by Carole Lander, 'Little People, Big Lives', gives voice to a range of people living with dwarfism. The book features insights from British actor, Warwick Davis, as well as ten Australians. These individuals were selected to show their achievements in sport, business and the arts. Meredith Young, president of the Short Statured People of Australia, agrees with Warwick Davis that this book conveys a positive message about people living with a physical difference.

Purchase online here.

Source: http://www.checkword.com.au/%20SSPA

Travellers Aid Australia: new Victorian initiative


Travellers Aid Australia (TAA) is a not-for-profit organisation that  assists individuals who experience travel disadvantage, such as those who have disability, mobility challenges, or who encounter unplanned emergencies requiring travel.

From September 2013, Travellers Aid will run a twelve month pilot initiative in Wangaratta. The service will include:
  • Personal Care
  • Communication Assistance
  • Meal Assistance
  • Low Cost Mobility Equipment Hire (booking required)

Email wangarattacoordinator@travellersaid.org.au for more information.

Source: http://www.johnmckenna.com.au/blog/2013/09/30/another-brilliant-initiative-by-travellers-aid-wangaratta-vic/

The GSNV works hard to connect individuals and families interested in sharing their experiences and insights with others. People interested in contacting others “in the same boat” can contact the GSNV to provide details and we will assist in making connections.
 
  •        Monilethrix
  •        Idiopathic CD4 lymphocytopenia
  •        EPP (early diagnosis)
  •        XYY

If you would like to make contact with others in the same boat and share your experiences with the above conditions,  please either contact the GSNV office by phoning (03) 8341 6315 or by emailing info@gsnv.org.au
For a listing of support groups in Victoria see the links page on the GSNV website: www.gsnv.org.au
 
We are committed to your privacy
No details will be published without your consent, and those that are published will not include personal contact details. We will obtain consent from both parties before connecting individuals and families. 

Disclaimer
The GSNV works to support contact between individuals and families to share experiences. However, in individual cases, there may be differences in approach and opinion. Those placed in contact are alone responsible for the views and opinion shared.
                               For more events please see our website, www.gnsv.org.au
About the GSNV

The Genetic Support Network Victoria (GSNV) is a vibrant and active organisation committed to promoting the interests and well-being of people affected by genetic conditions. We assist individuals and families with the 'human', non clinical side of genetic diagnosis, living with a genetic condition, and gaining access to supports and services. The GSNV assists in the set up of new support groups and for those already established, helps to broaden awareness and assist in their activities. The GSNV is committed to improving the sense of isolation the community may feel in dealing with genetic conditions.
 
The GSNV is closely associated with a wide range of support groups, clinical genetic services and peak professional bodies.
 
Keeping up to Date

Please continue to notify GSNV of your change of contact details either by calling the GSNV office, or via email to info@gsnv.org.au. We have launched an exciting new website and database but are still finalising the upgrade.  Please bear with us as we make the updates.

The information and material presented in Bits and Pieces is intended for educational/information purposes only. The contents express the opinions of the authors who alone are responsible for the views expressed. GSNV does accept any legal responsibility for their contents.
Copyright © 2013 Genetic Support Network Victoria, All rights reserved.
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Genetic Support Network Victoria
South Building, Level 9, Murdoch Children’s Research Institute
Royal Children's Hospital Flemington Road
Parkville, VIC 3052
Australia

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