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GSNV Bits & Pieces
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                          NOVEMBER 2013

In this edition:

  • From the team
  • Support group news
  • In the media
  • Resources
  • Community
  • Research
  • Seeking contact
  • GSNV calendar
Welcome to the latest, and one of the final editions for 2013, of the GSNV e-news bulletin, Bits and Pieces. We take this opportunity to highlight some important calendar events and support group activities.  It's the 'business end' of the year and we support all those groups reporting on the financial year passed and the vital work conducted. 

I remind all those interested that the GSNV will be running Peer Support Training on Saturday December 7, 2013.  Please register quickly for your opportunity to learn and further develop your competency in delivering peer support to others.  Our training shows the things you haven't thought about and should!  Please see our website or email info@gsnv.org.au for more information.

The GSNV is planning for the holidays and advises that our office will be closed over the Christmas and New Year period.  Our office closure will be from December 24, 2013, until January 7, 2014. Stay tuned for further messages regarding end of year activities. 

AAAF awareness week


Australian Alopecia Areata Foundation (AAAF) awareness week is coming up! See the GSNV events page for details AAAF's Family Day on November 17th.

Carers Victoria Walk to Care


Carers Victoria is counting down to their annual Walk to Care on November 17th. Join 'Project’ co-host Charlie Pickering for the 4km walk along the banks of the Maribyrnong River to show your support for carers. There will be kids' activities, food and entertainment, and you can even get a massage in the wellness tent. Fun for the whole family!

To find out more and register, visit the Carers Victoria Website.

CleftPALS Christmas event


Kryal Castle has reopened the doors to its new land of medieval adventure and CleftPALS Victoria would like you to dust off your horse and cart and journey up a freeway to join us to celebrate Christmas. Kryal now caters to all ages from children discovering the myths, legends and fairytales of the new Castle to teenagers being entertained and thrilled in the Torture Museum and special effects Dungeon and parents enjoying the dramatic Castle Arena shows.

Add to this CleftPALS Victoria's provision of a hearty feast and beverages and heavily discounted tickets (for members), and you are sure to have a rollicking time!

View the full flyer for more information.

Tickets are to be pre-purchased by 15 November 2013 to allow CleftPALS to finalise the booking, secure the meeting point and order the feast!  CleftPALS Victoria Committee look forward to seeing you and your clan.

Haemophilia Foundation Victoria Annual General Meeting


The Haemphilia Foundation Victoria (HFV) invites members to attend their Annual General Meeting.

When: Sunday November 24th
Where: Melbourne Zoo

                                                              See the HFV webpage for more details.

HeartKids expanding partnerships


Up to 8 in every 1,000 babies are born with congential heart disease. Most cases are caused by a combination of genetic and environmental factors, while some are caused by a specific genetic fault.

HeartKids Australia continues to strive to provide support, encouragement and hope to families of children with heart disease. HeartKids has partnered with Woolworths, who will make a donation for every pack of Select Once Upon a Time Nappies sold, and IKEA who will donate every time an IKEA Family Card is swiped.

Sources:

Spina Bifida Foundation Victoria end of year picnic


What are you doing on Sunday December 1st? Spinal Bifida Foundation Victoria (SBFV) are planning a pre-Christmas catch-up from 11am in Jells Park for SBFV members and friends. The Oaks Picnic Area (enter from Ferntree Gully Rd South end) is wheelchair accessible and has BBQ facilities, shelter, disabled toilets and ample parking. There is also a nearby oval for anyone interested in a post-lunch game of cricket. A small marquee and plastic tables will be provided; please bring blankets and chairs, and a picnic lunch, ideally with some items to share. SBFV hopes to see you there!

See the SBFV website for more details.

Down Syndrome Inclusion Support Service nominated for excellence


The Down Syndrome Inclusion Support Service is a classroom based consultancy service that provides practical assistance and resources for teachers, and works toward improving learning outcomes for students with Down syndrome and their classmates. This program was developed by Ian Cook from Down Syndrome Victoria and has been nominated as a finalist for the National Disability Awards in the Category of Excellence in Improving Education Outcomes Award. The awards ceremony will be held in Canberra on November 26.

Read more about the program on the Down Syndrome Victoria website.

Source: DNews November 2013 Newsletter

People with Rare Diseases reveal how long it takes to get a diagnosis


The USA National Organization for Rare Disorders (NORD) put the question out to its social media followers of how long they had waited for an accurate diagnosis. A huge response followed, with 20% of the respondents saying they had waited 10 years or longer for an accurate diagnosis.

"During this year marking the 30th anniversary of NORD and the Orphan Drug Act, we have been celebrating progress to date in drawing attention to the need for treatments for all patients with rare diseases.  But it's also clear that we now need to focus on the diagnosis challenge" said NORD representative.

Read NORD's blog post here.

Source: http://blog.rarediseases.org/30-years-after-the-orphan-drug-act-it-still-takes-too-long-for-people-with-rare-diseases-to-get-an-accurate-diagnosis/

Medication shortages in Europe impacting those with rare diseases

The European Union reports current shortages for between 30-60 different medications, including medications for genetic conditions such as Gaucher disease and Fabry disease. EURODIS, the alliance for Rare Diseases in Europe, has described the shortage of medications as potentially dangerous for patients. In response to this situation, EURORDIS initiated a process to develop a Common Position for preventing, managing and solving medicine shortages. Read the Common Position here.

Source: http://www.eurordis.org/en/content/common-position-adopted-preventing-managing-and-solving-medicine-shortages

Online Community for Young People with Chronic Conditions


Livewire, a subsidiary of the Starlight Children's Foundation, is an online community for young people living with a serious illness, chronic health condition or disability, and their families. Livewire uses trained facilitators to provide a safe online space where members can connect and share similar experiences.

Learn more about Livewire at Livewire.org.au.

New interactive tool to monitor quality of Australian maternity services


The Australian Institute of Health and Welfare has released a new web product. The National Core Maternity Indicators web dashboard has been developed to monitor the quality of maternity services across Australia. This tool is endorsed by the heads of Australian Government and state and territory health departments and consists of an interactive data visualisation portal to display data for the ten indicators for quality of maternity care.
  
This dashboard can be accessed at: http://www.aihw.gov.au/ncmi/

Single Fathers Due to Cancer podcast


Cancer Support Community Radio (USA) has produced a podcast about the issues faced by husbands left to raise children following the death of their wife due to cancer. The 55 minute podcast includes an interview with author Bruce Ham about his own experience as well as psychiatry professor Justin Yopp discussing current research in this area.

Listen to the podcast here.

Source:
  • Cancer Council Victoria CISS Cancer News Update Oct 2013
  • http://www.voiceamerica.com/episode/73328/single-fathers-due-to-cancer
For more details see our website.

New genes linked to multiple sclerosis


The largest study of Multiple Sclerosis (MS) to date was recently published in Nature Genetics. The study identified overlap between genes involved with MS and other autoimmune conditions such as inflammatory bowel disease and coeliac disease.  Researcher, Professor David Booth, says this is a step towards understanding the genetic basis of the disease and developing new therapies.

Source: http://www.phgfoundation.org/news/14713/

New $22.6 million chronic disease research centre


A new $22.6 million partnership research centre was launched in September which aims to address chronic disease in Australia. The Australian Prevention Partnership Centre will conduct leading-edge research to help Australia drive changes to its healthcare systems.

Source: http://newsroom.melbourne.edu/news/new-226m-national-chronic-disease-research-centre-will-drive-critical-change

Genetic insights into Alzheimer's disease


The largest genetic study of Alzheimer's to date has identified more genes associated with Alzheimer's disease. There are now 21 genes known to be linked to Alzheimer's. Having changes in these genes can make an individual more likely, but not certain, to develop Alzheimer's. Dr James Pickett, head of research at the Alzheimer's Society UK, says "this exciting discovery of genes linked with Alzheimer's disease opens up new avenues to explore in the search for treatments for the condition".

Source: http://www.bbc.co.uk/news/health-24670848
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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