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events | GSAW| Family Day| newsletters & publications | June-July 2008 Update

• GSNV News
• Group News
• Genetic Health Services Victoria News
• Conferences
• Workshops and Seminars
• Travel
• Grant Opportunities
• Of Interest
• Websites

GSNV NEWS

GSNV Special Projects Grants 2008

Congratulations and thankyou to the organisations who applied for GSNV’s Special Project Grants this year.  We were delighted to approve all applications. Congratulations to the following groups for their projects:

• SCA Australia (spinocerebellar ataxia) - Setup & admin costs for new group
• Cystic Fibrosis Victoria - Education is Empowerment project
• Friends of Sammy-Joe Foundation - Printing & stationery (TTD support group)
• Porphyria Association - Book of personal stories  
• Chinese Parents’ Special Net - Rhythmic dance for children with autism  
• CAH Support Group - Handbook for parents  
• Marfan Association Victoria - Banner for promotions at events  
• Spina Bifida Foundation of Victoria - Independent Living Skills seminar

We look forward to hearing more about your projects.

GSNV Membership Renewal Time

You are invited to renew your membership for the GSNV for the coming year. If you are on the mailing list or have let your membership lapse, please consider becoming a full member so you can receive all the benefits of membership. The cost is $22 or $11 concession for individuals and/or groups.
What are the benefits of being a member of the GSNV?

• Stay informed of news and events through our monthly newsletter
• FREE or discounted registration for GSNV events, including workshops, seminars and conferences
• Access to GSNV’s Small Grants of up to $400
• Access to nominate for committee positions
• Ability to nominate people for our “Art of...Awards”

You will be supporting the important work of the GSNV, providing information, education, support and advocacy to/for people affected by genetic conditions.

THANK-YOU to everyone who has paid their memberships.
Donations (even small ones) are also greatly appreciated and tax receipts will be sent.
If we can save money on postage by sending you an email copy of our newsletter rather than a print copy please let us know.   It all helps.

Motorcycle Ride and BBQ Lunch - Sunday October 12, 2008

GSNV invites members and friends to a BBQ Lunch & a Motorcycle Ride on Sunday October 12, 2008.  This event is sponsored by of the Prahran Order of the Eastern Star with riders from the Victorian Masonic Motorcycle Association, and is open to anyone affected by genetic conditions, siblings, parents and carers.  
To register your interests please contact the GSNV Office on (03) 8341 6315 or email to info@gsnv.org.au.
Participants (for the motorcycle ride) must be aged 12 years or older. Vintage cars are also available. 

Research Conference Report - Leah Lonsdale

The ‘Involving People in Research Symposium’ was held in Perth in March.  It was a highly interactive forum for people interested in supporting and promoting representation and community involvement in all major facets of the research process.  Half of the conference showcased examples of community/researcher partnerships.  The other half of the conference was highly interactive and included discussions about barriers and how to work around/eliminate these barriers. Read the conference report in full.

Shop to Support GSNV

Would you like to help GSNV raise money when you shop? Thanks to Self Fundraising, you can now buy books, gifts, flowers, clothes, and even holidays online - and 5% or more of the price will be automatically donated to GSNV. There's an excellent range of products and shops - visit the website at http://www.self-fundraising.com.au/cause/gsnv

Starting a Support Group: Seminar Notes Still Available

Handouts are still available from GSNV’s seminar on Starting a Support Group. For your copy, please contact Leah on (03) 8341 6315 or email leah.lonsdale@gsnv.org.au . (NB: notes will be posted to you as they include a bound book)

GSNV Pens and Pins

GSNV Pens and Pins are still being sold through the GSNV office. Pens are $2, and come in blue, green, orange or bright pink; gerbera pins are $4. Call us in the office, or download an order form to get your GSNV pens and pins sent to you.

GROUP NEWS

Apert and Crouzon Syndrome Get Together

The first meeting of the Apert and Crouzon Syndrome Get Together will be held on Sunday 17th August from 2.30 – 4.30pm at the Royal Children’s Hospital on the 10th floor (take the Blue lifts to 10th floor and follow the signs to the conference room). Tea/coffee/OJ provided, please bring a plate of afternoon tea to share.  RSVP to Jodi on ph: 0431 2987783 or 9560 5884 or via email to jodi_jimmieson@yahoo.com.au or Leah at GSNV on (03) 8341 6315. 

Arthritis Victoria

In determining its strategic directions for the period 2006-2008, Arthritis Victoria made a commitment to ensure that in all we do we facilitate access to our programs and services for:

• People from diverse cultural backgrounds;
• People in all parts of metropolitan Melbourne and rural and regional Victoria;
• People of all socio economic levels.

The Health Inequalities Advisory Committee (HIAC) seeks to honour this commitment. HIAC met for the first time in December 2007. At this meeting a workplan for 2008 was developed and agreed. The workplan identifies three public forums. These forums are the landmark events of the HIAC in 2008.

17 July 2008

The second forum will expand on this theme by further considering the impact of socio-economic disadvantage.

11 September 2008
The final forum will extend on this by including consideration of rural, regional and remote populations in Victoria.

The forums will aim to foster links between Arthritis Victoria and the population health and health promotion fields - to develop links between Arthritis Victoria activities and networks that work with culturally diverse communities, the socio-economically disadvantaged, and rural and regional communities.

MyTime Support Groups for Parents

MyTime Support Groups for Parents now has groups running in 3 locations throughout Melbourne’s west.  Join with parents, carers and guest speakers on topics of interest.  The groups meet in Footscray at the Tweedle Child and Family Health Service on Tuesdays from 9.30am – 11.30am, Laverton at the Laverton Community Children’s Centre on Tuesdays from 1.00pm – 3.00pm and Melton at the Hillside Community House Recreation Reserve on Wednesdays from 9.30am – 12.30pm.  Enquiries and registrations please contact Eleni on Ph:  9689 1577.

GHSV NEWS

GSNV maintains relationships with around 150 organisations, including Genetic Health Services Victoria.  Genetic Health is one of the primary providers of genetic testing and genetic counselling in Victoria, and is very supportive of the GSNV

Each year, Genetic Health and GSNV develop a joint work plan to help us work together towards ensuring the availability of accessible, client-centred genetics services. In previous years, the work plan has included a joint seminar for Awareness Week 2007 and the consumer feedback survey on what makes a quality genetics service. (Stay tuned for a report from the survey!)  Over the past few months, we’ve been drafting the joint work plan for 2008, and it’s shaping up to be another productive year.  The 2008 work plan includes collaboration on advocacy opportunities for people with genetic conditions and GSNV participation in Genetic Health’s quality assessment strategy.  We also hope to bring you more up-to-date information throughout the year on cutting edge technology and genetic services, to help you stay informed.  Keep reading the GSNV Update for more news.

New Look Website

The Genetic Health website is being revamped for ease of access to information for patients and families affected by genetic conditions as well as health care service providers. Visit www.genetichealthvic.net.au for more information and follow the transformation to the new-look and easier navigation of this site.

The Genetic Health Services Year in Review 2006/2007 can be downloaded here.

New testing for LQT

CONFERENCES

2nd Short Stature Symposium - 29 June, 2008

Genetic Health Services Victoria and the Short Statured People of Australia cordially invite you to attend the 2nd Short Stature Symposium  will  be held at the Ella Latham Theatre, 1st Floor, Royal Children’s Hospital, Parkville on Sunday 29 June, 2008 from 10:00 a.m. to 3:30 p.m. There will be a variety of speakers including:

• Margaret Sahhar, Senior Social Worker, Genetic Health Service
• Dr Margaret Zacharin, Endocrinologist, Royal Children’s Hospital
• Members of the Short Stature Community
  
• Forum where questions can be asked of expert panel members
  

Please RSVP to maureen.ralph@ghsv.org.au or Telephone 8341 6244 by Monday 16 June, 2008. Unfortunately no childcare is available

Congenital Adrenal Hyperplasia Symposium - 6 July, 2008

The next CAHSGA Symposium will be held in Brisbane on Sunday, 6 July 2008. Further details will be posted on this site as they come to hand.

CleftPALS National Conference - 19 July, 2008

Saturday 19 July 2008, 10am - 4pm, Brighton Masonic Lodge, Church Street, Brighton ( Melways ref 67 E11 (parking at Coles or train to Middle Brighton Station).

A fascinating day for parents, medical and allied health professionals, and anyone interested in clefts and cleft issues. Speakers include:

• David Croft, Psychologist
• David Chong, Surgeon at Royal Children’s Hospital
• Piri Davidson, Cleft Coordinator, RCH
• Tania Lacy, comedian / parent
• Graeme Wallace, Operation Rainbow
  

Lunch, refreshments and creche provided.  FREE entry - RSVP for catering and to book creche to cleftpalsvic@hotmail.com  for more information see http://www.cleftpalsvic.com/?page_id=3

Australasian CHARGE Syndrome Conference - Christchurch, NZ, October 3-5 2008

The 8th Australasian CHARGE Conference is to be held in Christchurch, New Zealand from the 3rd-5th October 2008. We hope to make this event one of the most succesful ever CHARGE conferences, and we would love to see you there. The conference is intended to provide information to families, educators, therapists and medical professionals, and is a great opportunity to meet with others. Visit the CHARGE Conference website for more information.

World Rett Syndrome Congress - Paris, 10-13 October

The 6th World Rett Syndrome Congress will be held in Paris from 10th-13th October 2008. The objectives of the Congress are:

• To provide a forum for scientists to present topical research findings in either oral or poster presentations, as well as to foster international collaborations.
• To provide medical practitioners and other health care professionals, including physiotherapists, occupational therapists and speech pathologists with an opportunity to update their knowledge and skills in the care of patients with Rett syndrome.
• To provide an opportunity for parents, families and carers of those with Rett syndrome to meet other families, as well as experts in the field who can offer practical insights into the management and care for those with Rett syndrome.

Click here to download an information pack for the conference.

Metabolic and Dietary Disorders Association National Conference - Queensland, 18-19 October

The MDDA National Conference 2008 will be held in Queensland from the 18th-19th of October.

Visit the website for more information as it becomes available.

Mucopolysaccharide & Related Diseases Society Australia Conference - Christchurch NZ, 20-23 November

New Zealand and Australia are working together to improve scientific knowledge and clinical care for Lysosomal diseases. LDNZ will host a joint New Zealand and Australian conference in Christchurch in 2008.

The conference is due to run over three days from 20 to 23 November 2008 and will include 25th birthday celebrations for the Australian Society, and guest speakers including Professor Sillence, Dr Wraith and Professor Hopwood who are some of the worlds leading experts in Lysosomal Diseases.

For more information please visit the website.

WORKSHOPS AND SEMINARS

Seminar - How to manage your money - Wednesday 2 July

As part of their Independent Living Skills program, the Spina Bifida Foundation of Victoria (www.sbfv.org.au) is running a seminar on "How to manage your money" with Financial Counselling Victoria.

Some of the topics that will be discussed are:

• Pitfalls to be aware of in the marketplace
• Utilities, fines, credit cards, Capital Grants, No Interest Loan Scheme
• Internet Banking, saving, budgeting
• Basic money management skills

Time: Wednesday, 2nd of July, 10:30am - 2pm (Lunch provided). Place: Hayden Raysmith Room, 4th Floor, Ross House, 247 Flinders Lane, Melbourne 3000. Cost: Free for members, $5 for non members.

RSVP: By 25th June 2008 to Mini on (03) 9663 0075 or email m.dahiya@sbfv.org.au for more

CISMFA: Critical Incident Stress Management Foundation Australia

CISMFA is a not-for-profit organisation offering short courses throughout the year in areas such as crisis intervention, trauma counselling, managing violent situations, suicide prevention / intervention, and compassion fatigue. Courses are generally 1-2 days, and are held in Carlton. For information on course topics and what is provided, visit http://www.cismfa.org.au/education/descriptions.htm#basic .

TRAVEL

Public Transport Ombudsman

Victoria now has an office that people can ring if they have any problems with train, tram or bus services. The Ombudsman, James Harnett, can be contacted on freecall 1800 014 111.

GRANT OPPORTUNITIES

The Macquarie Foundation Grant DGR Community Services and Development Grant

The Foundation’s funding criteria is flexible and open.  Applications are welcome for funding from a diverse range of community-based initiatives that are working in innovative ways to provide long term benefits. Each application is assessed on its individual merit.  Traditionally, beneficiaries of the Foundation come from areas of education, arts, health, research, welfare, health care and environment.  Funding:  Various; Closing Date:  ongoing, apply by mail. 

Contact:  Ms Sally Shepherd, Manager, The Macquarie Bank Foundation (02) 8232 7554 or visit the Macquary Foundation Grant Website for more information.

The Reichstein Foundation Grants ITEC (DGR Preferred)

Community Services and Development grant to work for social change in order to create an equitable distribution of wealth and power and a healthy and sustainable environment.  The Reichstein Foundation's current priority is to support: 

• Indigenous people
• People with a disability
• New arrived communities

Maximum funding is   $20,000,   Closing Date:  ongoing, apply by mail.

Contact by email, Phone (9650 4400), or visit the website for further information.

OF INTEREST

Infoxchange Australia

Infoxchange Australia is now able to provide detailed telephone account audits for community based organisations, in conjunction with Dog and Bone Phone Brokers. The audits ensure that organisations operate their telephone accounts efficiently, are not being charged more than their agreed rates and are receiving competitive market rates, by conducting mini market reviews and tenders.

An Infoxchange audit of one community organisation in 2007 saved them $94,000 over two years, and every audit conducted has resulted in some saving! Call the Infoxchange Australia helpdesk on 1300 306 645 to discuss your specific needs and how little this worthwhile exercise costs.

Roytal

Currently Roytal provide employment for over 100 individuals with disabilities. People have the opportunity to work in a number of manufacturing areas, and to enhance their skills through targeted on and off the job training. For those who are ready and able to take the "next step", Roytal has links with a number of specialist Open Employment services ensure that this vocational option is also supported.

Roytal Offers quality products and services, reliable lead-times, consistent client communication and feedback, formal specification review and approval, guaranteed product or service conformity. The Range includes packaging and Assembly services for clients across a number of industry sectors, Metal fabrication of wire, strip, tube and sheet metal to client specification, Manufacture and design of wire baskets and trays, Wire Brush ware specialising in twisted wire brushes, Collection cans.

To check out this great organisation visit their website at www.roytal.com.au

Arts Access

Arts Access provides access to arts and cultural activity for people who are disadvantaged, including people with a disability. See the Arts Access website at http://www.artsaccess.com.au/ to view their upcoming events and programs, like Art Day South a flagship project for Arts Access having been successfully run for 12 years as a model of "inclusive practice", where the artists work collaboratively with each other and the participants.

Helping girls develop a positive self image

Helping girls develop a positive self image is a tip sheet for parents of girls of all ages, published by the Australian Psychological Society. “Girls get many messages about how they should look and behave…….Some of these messages encourage the sexualisation of girls from a very early age, before they are emotionally and physically ready. You can teach girls to value themselves for who they are, rather than how they look”. For a copy see the Australian Psychological Society website.

WEBSITES

Infoxchange Service Seeker

Infoxchange Australia has developed the Infoxchange Service Seeker (ISS) to allow citizens to be able to access up to date, accurate information on health and welfare support services at any time of the day and night. This service allows you to search for service by area, target group (family, youth, male, female, aged...) and accessibility (after-hours service, wheelchair accessible). The Infoxchange Service Seeker currently contains details on 115,336 government and non-government services and agencies in Victoria. It's updated regularly, so that the information is up to date... well worth a look! (and yes, the GSNV is on there - not only does it list our website, phone numbers and wheelchair accesibility, it even lists the tram numbers if you come in to visit us in person...)

Respite Finder

The Respite Finder and mini-directory are new tools developed to assist families of children with disabilities to find and access respite. It has been developed in the Hume and Moreland areas, but the Respite Finder will be useful for all families in the northern region of Melbourne, and for people of all ages with disabilities. To view the Respite Finder, go to www.respitenorth.infoxchange.net.au then click on Respite Finder. Congrats to Eilis Hughes who developed this excellent resource!

AnSWeR (Antenatal Screening Web Resource)

• Are you pregnant or thinking about starting a family?
• Are you puzzled about the screening and testing being offered to you?
• Do you need to know more about conditions such as Down syndrome for which antenatal testing is offered?
• Have you had a positive diagnosis, and are you now wondering whether to continue or terminate your pregnancy?

Then visiting this UK-based website http://www.antenataltesting.info/default.html may provide you with some answers.

Ability Online Support Network

Since 1991, Ability Online Support Network has been linking chronically ill children around the world! A computer network designed to enhance the lives of children and youth with disabilities or illness by providing an online community of friendship and support. Take a peek at http://www.ablelink.org/public/default.htm

For more information on anything you’ve read here, please contact Penny or Leah in the GSNV office on (03) 8341-6315.