Welcome to the GSNV web site! Please take a look around. If you
cannot find what you are after, or if you notice that information
on the site is out of date, please email
Catherine to let us know. Happy surfing!
What's New at the GSNV
19-12-2007
GSNV Office Closed from December 24th to January 6th
The GSNV Office will be closed from December 24th to January 6th while Leah, our magnificent Co-Ordinator, and Penny, our fantastic Admin Assistant, take a much deserved break. Penny will be back part-time from the 7th, and Leah will return full-time on the 21st of January. We wish them and you a happy and relaxing holiday!
Support the GSNV with your (last minute) Christmas Shopping!
Have you visited our Altruistic Shopping site at Self Fundraising? You can shop online to buy gift hampers, books, flowers, clothes, CDs, homewares, and practically anything else you can think of. Better still, you get to avoid all the shopping crowds - and 5% of the money you spend goes to the GSNV!
Genetics in the news!
Did you catch the recent article in The Age 'Do you really want to know the risk?'. It's definitely worth a read if you want to know more about genetic testing for conditions like familial cancer - and how Australians approach genetic testing, and the more trying issue of informing family members of a genetic diagnosis.
Some fun links for Christmas...
Since this will probably be our last update for the year, here are a few sites for you to entertain yourselves with over the Christmas Holidays. Enjoy!
Quilts4Kids - browse some of the gorgeous quilts being made, and consider signing up for a patch. Do you know a child with a lifelong or life-threatening illness? Quilts4Kids is looking for children to stitch for in 2008, and you can sign up any time...
Online Jigsaw Puzzles - no missing pieces, and the cats / dogs / children / pet frog can't knock them off the table when you are almost done...
Cookie of the Day blog - speaks for itself, really, even if the measurements are in pounds and ounces.
To register your interest or to book your child’s motorbike ride, phone Leah or Penny on (03) 8341 6315 or email Leah. The event is free. (Thank you to the Freemasons and the Victorian Masons Motorcycle Association for providing the motorcycles, riders, and morning tea.)
Monday 3rd December is the International Day for People with a Disability!
The Older Families Support and Planning Program provides access to a 24 hour emergency in-home respite, help carers to access respite and recreational services in the community and link the person they are caring for to recreational activities. The program can also assist with transport to medical appointments, and financial contribution towards a short break away from home.
People 65 years and over, or Indigenous carers 45 years and over, who live with and support a person with a life long disability such as acquired brain injury, intellectual or physical disability, degenerative neurological disorder or mental illness, and who reside in the Northern Metropolitan Region of Melbourne are eligible to access the program. Please contact Beata or Seana on 9495 2500 for more information.
Research: Library and Information Needs of People with a Disability
This report presents the results of a research project commissioned by Vicnet, a division of the State Library of Victoria. The research explores the library and information needs of people with a disability, particularly in relation to the internet. Read more...
Access to Premises Campaign Kit
The Access to Premises Campaign Kit addresses the issues of up to 4 Million Australians who are unable to access their own communities. The Kit provides information and tools to people with a disability that will help them speak out about the lack of access to businesses and services that they face in their local communities.
26-11-2007
Launch of the Australian Centre for Human Rights Education - Thursday, 13th December
You are invited to the launch of the Australian Centre for Human Rights Education (ACHRE) on the occasion of Human Rights Week: a discussion of how we might build a human rights environment which advances a full and decent life for all - 'Human Rights in Hearts and Minds' featuring Don Watson and Bryan Dawe. Details: 6pm, Thursday 13 December 2007 at Casey Plaza, RMIT University (Bowen Street, Melbourne - enter from La Trobe Street). Refreshments provided.
The ACHRE works collaboratively to develop strategies and tools for the promotion, adoption and enactment of human rights. Our vision is a society where people flourish and fully participate in society. Our emphasis is on empowerment through learning. For more information on the Centre for Human Rights Education, contact Gillian Davy on (03) 9925 2395.
Research publication: Housing and Support for People with Intellectual Disability and High, Complex or Changing Needs
The Proceedings of the 2007 Roundtable on Intellectual Disability Policy are now available in PDF. The theme of the 2007 Roundtable was Housing and Support for People with Intellectual Disability and High, Complex or Changing Needs. An outcome of the Roundtable is also an independent Position Statement, which sets out what the arrangements for structuring housing and support and outcomes might look like if current policy directions embedded in documents such as the State Disability Plan were realised.
Updates to the website!
The Advocacy News page has been updated with two new conferences and a website, and the News page now features information on next year's VALID conference and the Smith Magenis Syndrome's upcoming Bowling day.
19-11-2007
Information sheets for support groups!
The GSNV has been hosting Genetic Counselling Student, Michelle Howson, as part of her final placement. As part of her work with us, she has researched and written two information sheets for support groups - one on recruiting and managing volunteers, and the other on finding venues for events. Visit our Resources for Support Groups page to read all about it!
Don't forget the Walk Around Albert Park Lake this Sunday!
Bring your family, friends and a picnic for a great day out raising awareness of the GSNV, theTurner Syndrome Association of Victoria and your own group! Registration is $15 for an adult, $8 for a child or $40 per family. See the flyer for more information.
Albury/Wodonga Proposed Visit
The Genetic Support Network of Victoria is planning to visit Albury/Wodonga. We’d like to make our visit as practical and useful as possible to people affected by genetic conditions. We’re thinking of holding a seminar or workshop to address the issues that really matter to you. Please contact us, and tell what you’d like to hear about via email to leah.lonsdale@gsnv.org.au or via phone to (03) 8341 6315.
YouTube video of proceedings from Disability Election Forum held in conjunction with the AGM of the Association for Children with a Disability
There has been some media coverage of the Disability Election Forum held in conjunction with the AGM of the Association for Children with a Disability. The Association is encouraging people with disabilities and their families to write letters to the relevant editors in response to these articles so that the issues around disability will continue to be on the public agenda. Visit the Association for Children with a Disability website to learn more. If you are unfamiliar with writing letters to the editor, you can find some good guidelines at the OurCommunity website.
As for the YouTube video, a whole collection of candidates from different parties, including Jan McLucas (ALP), Mal Brough (Liberal), Lyn Allison (Democrat), Junelle Rhodes (Carers' Alliance), Rachel Siewert (Greens), and Annette Ellis (ALP), were invited to the AGM to share their thoughts on policy in the area of disability. Here's your chance to hear what they had to say...
More website updates...
The Website Elves are working on getting all the newsletter material, and hopefully a few other things, onto the right parts of the website. They would especially like to draw to your attention the two new 'Meet our Members' stories up this month, and the lovely new Profiles on the Our Team page. Not all of the latter are there yet, but you can certainly get a feel for who the new committee is (and if you are a committee member reading this and your profile is not up there, shame on you! Email the website elves forthwith to be added to this illustrious collection of prose and poetry.) (no, this website elf has not been drinking, but she has had a very long day and is perhaps getting a trifle silly...).
In partnership with Genetic Services Victoria and Connect Care, Genetic Support Network of Victoria is pleased to invite people affected by the genetic condition Spinocerebellar Ataxia, (including partners, friends and carers) to a meeting to be held on Sunday December 2nd from 2.00pm to 4.30pm. The venue is the Meeting Room at Genetic Health Services, Level 10, Royal Children’s Hospital, Flemington Road, Parkville. Afternoon tea will be provided. There is no cost to attend. Please RSVP your attendance to Leah Lonsdale by email or by calling the GSNV Office on (03) 8341 6315.
30-10-2007
GSNV Welcomes a New Committee!
Our brand-new Committee of Management gathered for its first meeting last night to welcome its new members, plan strategically, and elect a new Executive Committee. Congratulations to Carly Myer, our returning President (we are so glad to have you again!), to Marjorie Cresp, our Vice President, to Amy Herlihy, our intrepid new Treasurer, and to Catherine McLean, our Secretary. Our thanks go out to Tony Briffa and Andrew Williams, our 2006-2007 Vice President and Secretary, respectively, and particularly to Sharon Lewis, retiring after three years as our Treasurer.
We're particularly fortunate this year to have seven completely new members, and warmly welcome Vassie Dandanis, Louisa Di Pietro, Amy Herlihy, Carolyn Minster, Moira Rayner, Ingrid Winship, and apprentice committee member Maria Liistro. We welcome back our veteran committee members Tony Briffa, Marjorie Cresp, Susan Fawcett, Sarah Gliddon, Sharon Lewis, Catherine McLean, Carly Myer, Penelope Myers and Andrew Williams. Visit Our Team to meet our new committee - profiles are appearing daily!
Congratulations to all our new and returning members, and to our executive committee, and thank you to our 2006-2007 Committee Members for their service and enthusiasm over the last year.
Mark your Diaries for GSNV 2008!
Our Committee lost no time yesterday in getting down to business, and we already have two dates for your diaries next year. Our Family Day (venue and time to be advised) is scheduled for April 13 2008, and our Awareness Week will run from the 7th to the 13th of December, coinciding with International Human Rights day on the 10th of December. Stay tuned to learn more about these exciting events!
9-10-2007
Motorcycle rides & Morning Tea – Saturday 8th December
We’re delighted to announce our new partnership with the Victorian Mason Motorbike Association (VMMA). Join us for morning tea – including a motorcycle ride for children over 10 years of age with genetic conditions. The day will kick off with free motorbike rides for up to 20 children to the Mason’s lodge in Ivanhoe, where we will meet for morning tea. Families are invited to follow in cars and join us at the Lodge for morning tea and photos with the bikes. (Children who are unable to ride on a bike may like to come along and have their photo taken with a bike.) Another group of children will have the chance to ride bikes on the return trip.
Depending on numbers, some kids may have the chance to have a second motorbike ride, and brothers and sisters and “big kids” may be invited to ride a motorbike too - but obviously we can’t promise until we know numbers. To register your interest or to book your child’s motorbike ride, phone Leah or Penny on (03) 8341 6315 or email leah.lonsdale@gsnv.org.au . The event is free. (Thank you to the Freemasons and the Victorian Masons Motorcycle Association for providing the motorcycles, riders, and morning tea.)
All motorcyclists have Working with Children police checks, and insurance is provided by the Masons.
New group for families with Spinocerebellar Ataxia (SCA)
Over the last year there has been some discussion about starting a support group for people affected by Spinocerebellar Ataxia and their families. Leah Lonsdale from Genetic Support Network Victoria and Donna Devlin from Care Connect are the main people who are working to try and establish a group with help from several individuals with SCA. They are keen to hear from people concerned about a definite or possible diagnosis of SCA about establishing a support group and whether you would be interested in attending an informal meeting in October/November 2007, where several invited speakers could be organised to talk on various aspects of ataxia.
If you have any queries, or would like to discuss the idea further, please feel free to contact Donna Devlin (9724 1677 or 0425 816 533) or Leah Lonsdale (8341 6315).
27-9-2007
Medicare health assessments now available for people with intellectual disability
From July 2007, people with intellectual disability will be able to have an annual comprehensive health assessment covered by Medicare under new health assessment items 718 and 719. The new health assessment provides a framework for GPs to assess the physical and psychological health of patients with intellectual disability and identify any medical treatment and preventative health care the patient needs.
Lots of new stuff on (where else?) our News page and a two new conferences are up at Advocacy News... go browse - and have fun!
26-9-2007
Walk Around Albert Park Lake - Sunday 11th November
You and your members are invited to join GSNV and the Turner Syndrome Association of Victoria for a Walk around the Lake. You can walk, run, hop, skip or rollerblade around the Lake. Bring your family, friends and a picnic for a great day out. If your group has a hat, T-shirt or badge, why not wear it and raise awareness about your condition too! Registration is $15 for an adult, $8 for a child or $40 per family.
This is an annual event held by the Turner Syndrome Association of Victoria. GSNV is participating to help raise awareness of genetic conditions, both for Turner Syndrome and other conditions. GSNV will have a marquee at the event – we’d love to see you there! See the flyer for more information.
Can you help increase understanding of Turner's Syndrome?
Women aged 18 and over are invited to be part of a research project to better understand Turner's Syndrome. Women with AND without Turner's Syndrome are needed for this project, which aims to understand what strengths and weaknesses in thinking processes (like memory and language) women with Turner's Syndrome may have compared to women without TS. Click here to download a flyer, or contact Alice Burnett at the Monash University Neurosciences Research Group for more information.
Help writing Grants: Free reviews of funding submissions for community organisations
Granted is a new not-for-profit organisation that provides reviews of draft funding submissions. We assist community organisations that aim to make a positive social or environmental impact, but which have limited resources to seek funding. Granted's reviews are free, independent and confidential. If you think Granted can help your organisation, please visit the Granted website for more information.
Don't forget! GSNV AGM - Monday October 15, 6pm
Please come along to the GSNV AGM to be held on Monday October 15 from 6.00pm – 8.00pm. See flyer for details.
30-8-2007
GSNV Committee Nominations
Would you like to make a difference in the lives of people with or affected by genetic conditions? You may like to think about becoming a committee member. This is a great opportunity to contribute to the direction and activities of the Genetic Support Network Victoria (GSNV), and to be part of a terrific bunch of people committed to ‘overcoming genetic challenges’ and having fun (whenever appropriate)!
The GSNV Committee meets on the first Monday evenings each month from 6.00 pm– 8.00 pm at the Royal Children’s Hospital. To make attendance at meetings more accessible future meetings will be held via teleconference. This means that you can now attend committee meetings from the comfort of your home – in you pyjamas if you so wish! (Don’t panic No plans for web cam conferencing at this stage!) This is also a great way for GSNV members living in remote locations to consider becoming committee members.
GSNV CommitteeMembershipCriteria
80% of the GSNV Committee must be made up of people who have or are affected by genetic conditions. Please contact Leah Lonsdale, GSNV Coordinator or Carly Meyers (nee Weber), GSNV President for more information on Ph: (03) 8341 6315. Nomination forms can be downloaded here... contact the GSNV office if you need someone to nominate you!
New Resources Page on GSNV site!
Attached to our Useful Links page, the new Useful Resources page is your place to go to find that article about GreenPC, or Football for the Disabled, or the ongoing Utilities grants. It's also going to be the home of handy articles like the ones on Communication and on Advocacy from the current newsletter, just as soon as your trusty webmistress has a chance to make them into a usefully online-readable format...
A new Kabuki Victorian Support Group is being formed. Please contact Stacey Mc Keirnan if this is of interest to you. Ph: (03) 5275 1542. For information on Kabuki Syndrome go to www.sakks.org.
The first meeting of the Moonee Valley Carer Support Group will be held on Tuesday 18th September 2007 at 10am at the Moonee Valley Council Offices. Please come and/or encourage others to attend. This is a new group and is open to all carers who live in or around Moonee Valley. Email Helen or Peter for more information.
Early Childhood Intervention Services Flexible Support Packages
Early Childhood Intervention Services (ECIS) are provided to children, who have a disability or developmental delay, prior to school entry, and their families. The services include information and support, planning and service coordination, and individual and group therapy and education. Services are tailored to meet the individual needs of the child and focus on supporting the child in natural environments, in their everyday experiences and activities.
The Early Childhood Intervention Services (ECIS) Flexible Support Packages form part of the Early Childhood Intervention Services programs. The establishment of this new program recognises that some parents require additional support to care for their child with a disability. The packages also provide additional capacity to put in place a range of flexible supports to assist your child’s development.
Flexible Support Packages are to deliver supports and services that are:
Planned, organised and coordinated as part of the child’s current program and family supports;
Developmentally appropriate for the child; and
Monitored through the Family Service and Support Plan.
ECIS Flexible Support Packages are funded by the Department of Human Services (DHS) and provided by nine Community Service Organisations in each of the eight DHS regions. Download the Information Kit and Q&A for more information, or download the Application Form to apply.
Website of the week: VCOSS Clearinghouse (http://vcoss.org.au/clearinghouse)
The Victorian Council of Social Service (VCOSS) is the peak organisation of the non-government social and community services sector. VCOSS raises awareness of the existence, causes and effects of poverty and inequality, and contributes to initiatives seeking to create a more just society.
The VCOSS clearinghouse website provides information about training providers who can provide professional development training and support to community sector organisationsand groups, events including workshops and seminars, resources, including links to funding opportunities and business information for small organisations, and, our favourite, a list of Pro Bono Providers - Services and Skilled Volunteers, including links to providers of pro-bono legal work, volunteer databases, leadership and management training, and all sorts of other goodies.
Heaps of useful stuff here, particularly for the smaller support groups among us.
The Marfan Association of Victoria launches its new website!
Congratulations to the Marfan Association on the launch of their new website at www.marfanvic.org.au ... the place to go if you want to know anything about Marfan Syndrome, or about their organisation!
PS - our Support Groups page aims to provide current information on all our member support groups... is yours there? Are your details correct? If the answer to these questions is no, now might be a good time to email Catherine and get updated...
23-7-2007
Welcome Penny Dodds!
Some of you may have met our brand new Administrative Assistant, Penny Dodds, at our recent Family Day. Penny will be assisting Leah in the office on Mondays, Tuesdays and alternate Wednesdays, so you might speak to her if you ring the office on one of those days. We're delighted to have her on board, and look forward to working with her. Welcome, Penny!
Upcoming seminar: Spina Bifida and Continence - 31 July, 2007
At 10am on Tuesday 31 July, the Spina Bifida Foundation is holding a seminar on continence for parents of children with spina bifida, and also adults and teenagers with the condition. Contact Mini for details, or download the flyer here. (This seminar is partly supported by a GSNV Special Project Grant - GSNV congratulates the Spina Bifida Foundation of Victoria on putting together this program.)
Upcoming seminar: Co-Morbidity in Chronic Disease - 16 August, 2007
The Chronic Disease Self-Management Special Interest Group is a group of health professionals and consumers who meet to discuss the latest research and issues in implementing self-management programs and strategies in chronic disease management. On Thursday, 16 August at 10am, they will be holding a session on managing co-morbidities with chronic illnesses. Download the flyer here, or contact Christine Walker for further information.
12-7-2007
Parents, Families and Carers National Summit - Wednesday 8 August, 2007
There is no national voice in Australia for parents, families and carers. Every industry and professional interest group in the country has a national voice to get in the ears of government - except families. Yet parents, families and carers are far and away the largest bloc of citizens, voters and consumers in the country, but have the weakest voice. This Summit aims to change all this. We invite your participation in a long overdue process to create a national voice for parents, families and carers... Visit our Advocacy page to learn more, or visit the Summit website.
COSHG Workshop: Working Together for Successful Self Help Groups - Friday 27 July, 2007
The Collective of Self Help Groups (COSHG) is in its 30th year is holding a forum to enhance the skills and knowledge of self help groups and advocates and those who support such groups/people. This forum will include a panel session with representatives from the Disability Advocacy Resource Unity (DARU), the Disability Services Commissioner and DHS Disability Self Help Funding Program. Friday 27th July, 9:30am to 4:15pm, Flemington Community Centre, 15 Mt Alexander Rd, Flemington. Cost: FREE, RSVP to: 9349-2301 or email info@coshg.org.au .
On holiday?
With our Genetic Support Awareness Week behind us (and a huge success, of course- stay tuned for reports and photos!), and the weather being so very cold and rainy, we at the GSNV are all thinking about holidays... which is as good an excuse as any to introduce you to Interact Recreation Unlimited, which provides leisure and recreation programs and supported holiday opportunities, to people with disabilities and from disadvantaged backgrounds. Their latest holiday booklets can be downloaded here.
19-6-2007
Genetic Support Awareness Week - coming soon!!
Did you know that our second Genetic Support Awareness Week will be running from Sunday 1st to Saturday 6th July this year? That's less than two weeks away (watch as all those of us organising events cringe with horror at this thought)! Events will include our Midwinter Family Day, a joint seminar with Genetic Health Services on Family Health History, and a Coffee Morning in Glen Waverley, as well as a display in the Royal Children's Hospital through the week... Check out our GSAW page for more information - we'd love to see you there!
June Newsletter now available!
The June Newsletter is now online and available for your reading pleasure from the News Page! Heaps of information about Genetic Support Awareness Week, group activities, and new and exciting resources available - as well as our regular 'Meet Our Members' section, which focuses this month on KabukiSyndrome.
Quilts for Kids seeks children to cross-stitch quilts for...
Quilts 4 Kids is an organisation that makes quilts for Australian children with life-threatening or lifelong illnesses... which certainly covers a few genetic conditions. Children (or their parents) choose a theme and colours, and stitchers from around the world create patches for the theme, which are then stitched together into individualised quilts. At the moment, they are running out of children to stitch for! If you know a child who might like a personalised quilt, visit the website to register - or just visit the site to have a look at some of the lovely things being made.
6-6-2007
Advocacy Opportunity: Review of the Disability Standards for Accessible Public Transport
Submissions are being invited for the five-year review of the Australian Government's Disability Standards for Accessible Public Transport, either at public hearings being held around Australia or via email until Friday 24 August. Visit our ‘Advocacy News’ page to learn more.
FASCIA : Small Equipment Grants 2007
Not for profit community organisations are invited to apply for funding to support their volunteers. Visit our ‘For Support Groups’ page to learn more.
Don't forget to RSVP for Family Day!
Family Day is less than for weeks away! Have you RSVPed yet? It's shaping up to be a great day, with storyteller Andy Wright as our special guest entertainer, a really delicious lunch being planned, and lots of activities for the kids! Just in case you've forgotten, it will be held on July 1st in Ascot Vale, with story telling from 11 and lunch at 12. Call Leah on 8341 6315, or email her on leah@gsnv.org.auby June 22nd to let us know you are coming!
Survey on In-Kind Donations to Not-for-Profit Organisations
Infoxchange and a group of six individuals from the Future Focus Group are working together to create an online exchange that aims to modernise the way in which goods are donated ‘in kind’ to not-for-profit organisations. To research the viability and potential take-up of this concept, they have created a short questionnaire for you to complete. Visit our ‘For Support Groups’ page to learn more.
National Disablity Advocacy Conference - 16-17 July, 2007
This summit is for advocates, their Boards of Management and funding bodies to discuss important issues in disability advocacy. Visit our ‘Advocacy News’ page to learn more.
23-5-2007
Genetic Health Services Victoria Information Brochure now available
The GSNV has a strong partnership with Genetic Health Services Victoria. Their information brochure Some Frequently Asked Questions, about what to expect when attending a Clinical Genetics appointment, can now be downloaded from this website.
Thinking of coming to our Family Day?
Don't just think about it, RSVP! It's shaping up to be a great day, with storyteller Andy Wright as our special guest entertainer, a really delicious lunch being planned, and lots of activities for the kids! Just in case you've forgotten, it will be held on July 1st in Ascot Vale. Call Leah on 8341 6315, or email her on leah@gsnv.org.au to let us know you are coming! Haven't received an invitation? We may have an old address for you on our database - contact the office to get your records updated and have an invitation sent to you.
PS - we really need your RSVP by June 22nd so that we can pass on our numbers to the caterers, so don't forget to tell us if you are coming!
15-5-2007
Celebrate your volunteers!
Did you know that this week is National Volunteer Week? A lot of Genetic Support organisations rely a lot on the support they get for volunteers, and some are run entirely on volunteer time. So take a moment this week to thank the volunteers who support you - or to consider volunteering for your favourite support organisation yourself...
Shop to support the GSNV
Would you like to help the 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 the GSNV. There's an excellent range of products and shops - visit the website to give it a try!
Stop Press: Carer Support Forum - Saturday 26 May
'Can Survive' is presenting a Carer Support Forum on Saturday 26th of May from 9am to 4pm at the RACV City Club, Level 17, 501 Bourke Street, Melbourne. The forum will address all aspects of carer needs, and will include presentations on the psychological aspects of caring, respite, health and depression. Attendees will also get to attend two of four interactive workshops, exploring legal and financial issues, a philosophical approach, peer support and humour. Cost is $20 per person. Visit the website to download the flyer and registration form. Registration closes on Wednesday, 23 May.
Advocacy opportunity: tell 13CABS about your experience with Wheelchair Accessible Taxis
The Australian Quadriplegic Association (AQA) is meeting with 13CABS (former Yellow Cabs). They are wanting to meet with organisations about concerns re Wheelchair Accessible Taxis, as they are re-vamping this area, and are aware that consumers needs need to be met and would like the users' feed-back. This is a great opportunity to put forward concerns in regard to the wheelchair accessible taxi service, not only for 13CABS (former yellow cabs) but all Taxi services. ALL Your feed-back is highly valued, good, bad, small and big. It's time to have your say ! Contact Peter Van Benthem on 9489 077 or 1800 999 128 before the end of May to be involved.
New Articles in Advocacy and News areas of the website...
We've done quite a big update this week - too big to fit all of it onto this page! - so don't forget to visit the news (especially the 'Of Interest' and 'Website' sections) and advocacy news pages to see what's going on!
30-4-2007
Changes in the GSNV Office
This week, we're farewelling Catherine from her role as Genetic
Support Worker. Catherine will continue to work on this website
and on the upcoming Family Day, but Leah may take a little longer
to return your calls than usual, as she will be alone in the office
until a new Support Worker is hired.
23-4-2007
Newsletter delays
Just a quick note to those of you who normally receive your newsletter
in the mail - your newsletters are still coming, but owing to extreme
busyness and machinery malfunctions, they've been rather delayed
(folding 270 newsletters by hand can take a while!).... We hope
to get them out to you in the next few days.
New Support Groups
Can't find a support group on our Support
Groups Directory? Maybe our
New Support Groups page is where you should be looking. New
Support Groups is the page for our fledgling support groups
- the ones that have just got up and running, and the ones which
are still a gleam in someone's eye! If you are looking for other
families or individuals to start a support group, you can use the
New Support Groups pages as a place to advertise it - just email
Catherine to have your details added.
Website fun: Quilts for Kids
Do you enjoy cross-stitch, or know someone who does? Quilts
4 Kids is an organisation that makes quilts for Australian children
with life-threatening or lifelong illnesses. Children (or their
parents) choose a theme and colours, and stitchers from around the
world create patches for the theme, which are then stitched together
into individualised quilts. Know a child who might like
a quilt?Visit
this page to register - or just visit the site to have a look
at some of the lovely things being made.
16-4-2007
Newer News!
What a long time without an update! This is what happens when your
webmistress throws the internet in the air and goes on holiday...
But she is back now, and fortified with coffee and cake from our
first ever Genetic Support Morning Coffee (report coming soon to
a website near you!), she has uploaded the March-April Newsletter
to the news page, and has
even started a whole new section of the website called...
...Support the GSNV!
No, not the football
team... Support the GSNV is the page
where you can find out about opportunities to volunteer, sponsor,
or otherwise help out the GSNV. With our 2007 Family Day coming
up in July, and all sorts of other activities to follow, we're going
to have plenty for any prospective volunteers or sponsors to do
- so please take a look at it, if you
have the time, and help us to help you!
19-2-2007
New News!
As opposed to old news, you understand... The January-February
newsletter is now available from our news
page, with personal stories and lots of exciting events coming
up for our members. Not a member yet? What are you waiting for?!
Visit our membership page
and join up now - we'd love to hear from you, and our events are
free to GSNV members...
29-1-2007
Happy New Year!
Yes, we're back - a fact that quite a few of you seemed to have
noticed without help, judging by our record number of information
calls this January! We have a few updates to the website, with new
items on the News, Events, and Advocacy News pages for you to find,
as well as our new "Meet
Our Members" area, which now has personal stories and support
group information for Thalassemia Society Victoria (from the November
newsletter) and the Trichothiodystrophy Support Network. Our January/February
newsletter will be out soon, with information on our Small Grants
Project... watch this space (and your mailbox) for more information.
Genetic Testing Update from Genetic
Health Services Victoria
Following a year of Genetic Health Services Victoria (GHSV) documenting
and recording all requests for unfunded genetic testing, a report
was compiled by GHSV clinical director, Professor Agnes Bankier,
and presented to DHS requesting additional funding to support these
requests. DHS has responded by allocating GHSV additional funding
for genetic testing for the individuals and families who use GHSV's
services. For more information on how this will work, please visit
our Advocacy News page.
Our thanks to Sue Fawcett, Genetic Counsellor and GSNV Committee
Member for keeping us up to date.
There
have been
visitors to this site since 22 May, 2006
We keep our website as up-to-date
as possible .
Any feedback or comments you would like to make are most welcome. Click here to send us an email
Last Updated
03-Apr-2008
. Authorised by Leah Lonsdale. Enquiries: Leah Lonsdale
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