- From the team
- Support group news
- In the media
- Conferences and seminars
- Seeking contact
- GSNV Calendar
From the team
Dear GSNV community,
Great to be chatting with you again, how fast does this year seem to be drawing to a close!!
I’ve been fortunate lately to have some time out. Some time away from our everyday demands. It’s not rocket science but it reinforced for me how important it is to take a breath. We can’t all travel overseas or take time out of our lives for a prolonged period but everyone needs to find a way out - An outlet to peace and space.
My son reminded me this week when I was reflecting about this that ‘enlightenment is the space between thoughts’ - a quote by one of his mentors. And while I’m absolutely convinced that this is correct, this piece of wisdom doesn’t provide any help with how to access the space between thoughts.
So, I’ve reflected on my strategy and realised how inadequate it is, particularly in the glow of a months break. My strategy has always been to take a moment where I can find it. Smell the roses when the opportunity arises. Well, some time away has clearly demonstrated to me that planning and conscious effort is also required. Stolen moments remind us of how wonderful and important time out is but they are not the real thing, only a poking of memory that time out is rejuvenating.
Real time out doesn't come in time stolen away or opportune space. I know it’s not easy. I also know that nothing worthwhile is easy - Such a cliché but so true.
So what has my time away delivered to me? Well, when I reflect, I realise that without seeking these things it’s given me:
Appreciation and Gratitude – of my life and the people in it, there are so many living in challenge and difficulty.
Inspiration – People rise to all to kinds of challenges, learning about what others are struggling with and finding ways to be joyful and grateful, I need to strive towards that too.
Courage – I know so many that show courage every day - to get out of bed, to challenge the status quo, to keep going. Time between thoughts explores where you get your courage from, how deep is your source and what you need to keep dipping in.
Adventure – I remembered what its like to have a go, to laugh at trying something new and not doing so well, to play where the consequences are small and learn without fear. It's a bit like relearning – you need to have a go sometimes.
So, is it worth it to work hard to find the enlightenment in the space between the thoughts – I think it's a responsibility. Living with no time to stop means no time to not think, to not analyse, to not plan, to not judge, to not be focused on the next thing, to not be enlightened.
It’s so easy to get on the hamster wheel, to keep going round and round without drawing breath, finding enlightenment. I recommend drawing breath. There is much to be gained.
So how do you do that? Its easier to step out of a job than it is to step out of a life. It does take however the same commitment and focus - to opportunism and to planning.
While it’s not the answer, it’s better than nothing. Commitment to opportunism is about taking every opportunity – moments to step out of the rhythm of our life and to be in peace and space. To remember it’s about not thinking – giving our brains a chance to be creative and give us something not structured and driven by our experience and history.
Commitment to planning is about consciously creating the space for enlightenment. That may be about creating you time, creating down time or becoming more structured to create the opportunity. It can mean exploring all the reasons it doesn't happen and creating one where it can. It takes a commitment to prioritise. I think it’s worth it.
So I’ve gone on about enlightenment but enlightenment for what! The best part is that enlightenment will be about whatever your brain chooses based on what it thinks you need. That's the point! This time allows me bring new thoughts to the GSNV, new direction and contribution.
I’m so grateful for my experience and wish you every success with yours.
Support group news
1st & 3rd November 2017
Fragile X Community Days - Hobart and Brisbane
For everyone with an interest in Fragile X - families, carers, education professionals. Led by Dr Marcia Braden, educational psychologist & educator, and Dr Jonathan Cohen, medical director of Australia's only FX-specific medical clinic. Update on Fragile X conditions. The latest in research. Education & daily living strategies for children & adults with FX. Interactive session on anxiety in Fragile X syndrome. Discussion panel. Morning tea & lunch provided. Find out more about the Hobart
12th November 2017
CDH Sunflower Sunday
The event is free to attend. Our activities and games will help us raise funds for CDH through gold coin donations. Register as an individual, or with friends, family and workmates.
11am - 2pm - Join in at the Fitzroy Gardens, Wellington Parade, Melbourne. Meet on the lawn between Cook's Cottage & The Conservatory. Take part in the CDH Awareness Walk - Wear yellow to represent CDH! Blow bubbles for the CDH angels in our beautiful bubble ceremony and dedication. Enjoy family friendly games, face painting and fun kid's activities. Find out more here
12th November 2017
Melbourne CAHSGA Picnic
11.30am at the Oaks Picnic Area
Jells Park, Ferntree Gully Road, Wheelers Hill BYO: Picnic lunch and chairs
Kellie Clay on 0409 004 274
CAHSGA will set up at Oaks Picnic Area (see map
), so from a driving perspective you want to enter the park from Ferntree Gully Road, at the South Entrance. If they are unsuccessful at gaining a picnic shelter they will set up the camping shade tent and picnic table. Look out for Blue Balloons. If the weather is against us, an alternative venue is the Wheelers Hill Hotel, Cnr Ferntree Gully Road & Jells Road, which is just down from the park. Please rsvp to firstname.lastname@example.org
and please include a mobile number for contact just in case. Any further queries please don’t hesitate to email or call on 0409 004 274.
16th November 2017
Movie Fundraising Night for the Alpha-1 Association of Australia
Come and have a fun night out, watch a great movie 'MURDER ON THE ORIENT EXPRESS' starring Judy Dench, Johnny Depp, Williem Doffoe, Michelle Pfeffier, Penelope Cruz and more. 6pm at Palace Cinema Balwyn, 231 Whitehorse Rd, Balwyn. Enjoy a glass of sparkling wine and nibbles which is included in your ticket price of $30. Find out more and book here
19th November 2017
SWAN Family Christmas Party
Meet at the Big Goose, 233 Mornington-Tyabb Rd, Moorooduc VIC. Bring the whole family along to the Big Goose and enjoy feeding the animals, tractor rides, sheep dog show, reptile show, spit roast lunch (with kid friendly food) and a special guest. Lunch served at 12.00pm. BYO present for Santa to give your child/children.
or text Heather 0404 280 441 by Friday, 10 November
21st November 2017
GSNV peer support training
Professional counsellors are helpful, but there is nothing more powerful than talking to someone who has been "in the same boat" as you. Peer Support Training is available for all individuals, including staff from support groups. It is a one day workshop and our aim is to help you feel empowered to listen and talk with others who are in a similar position, and share your wisdom and experience. Training is free for GSNV members. Find out how to become a member here
. Please RSVP to email@example.com
. Find out more here
24th - 26th November 2017
FREE NF Family Weekend
Thanks to Roses Gap Recreation Centre, you will be provided with accommodation, meals and activities at NO COST to you! Roses Gap is located in VIC close to the SA border, so if you are willing to travel please register! This camp is ONLY for families affected by NF. Register here
25th November 2017
HeartKids Special Children's Christmas Party - Wodonga
This free Christmas Party is for heart children aged 0 - 12 years of age and one parent. It includes activities, food, Santa and a present. Buses to the party in Wodonga will be available from Shepparton and Benalla. Click here
to register for this event. 10:00 AM - 1:00 PM @Wodonga Sports and Leisure Centre, Hedgerow Court.
In the media
Victoria's euthanasia debate
Last month, a coalition of religious leaders launched a united campaign, pushing for a no-vote for the proposed Victorian euthanasia laws. In response to this, more than 120 doctors from around the state wrote to all 127 parliamentarians, urging the politicians to "reduce the suffering" of terminally ill Victorians by voting in support of the laws. Some people with disabilities do fear that assisted dying may be the "slippery slope" to involuntary euthanasia. But others see it as hard-won autonomy over their own lives. Disability advocate Tricia Malowney is on the ministerial advisory panel that shaped the proposed legislation laws, and says disability alone will not be a reason to ask for assisted dying. This may be relevant when people acquire a disability later in life and have a period while they struggle to adjust, Ms Malowney says. "It takes a while to accept that having a disability isn't necessarily that bad. Life is worth living." "Half the problem is we have a society that thinks there's something wrong with disability, that we're unloved and unloveable." All applicants must meet the eligibility criteria, which include being diagnosed with an incurable illness or medical condition that means they will die within 12 months. It must be causing unbearable suffering, as defined by the patient. And applicants will need to make the request themselves. Doctors or family members will face heavy penalties if they try to pressure them into a decision. Read more here
. BREAKING (20/10/17): Victoria's assisted dying laws have passed through the lower house. (23/10/17): Victorian euthanasia bill faces hostile upper house, read more here
Genetic testing for genes linked to breast and ovarian cancers now available on the Medicare Benefits Schedule
From November the 1st, women with a family history of breast and ovarian cancer will soon be able to undergo free genetic tests to see if they are at risk of developing the potentially deadly diseases. Up until now, patients have had to pay between $600 and $2000 to be tested by a private specialist. Others have had to wait for up to a year to receive free genetic testing at a public hospital. The Royal College of Pathologists of Australasia's genetics advisory committee chair Dr Melody Caramins says making the tests free marks a "huge milestone" and will significantly improve the lives of many Australians. "If an individual is a carrier of a BRCA mutation, they will have additional treatments available to them... if they already have breast cancer, however if they don't have breast cancer, they will have access to monitoring and the possibility to take preventative measures such as a prophylactic mastectomy." Read more here
. Also see here
for an online tool to estimate a woman’s risk of developing breast or ovarian cancer based on family history.
Changes to private health insurance
Last month, it was announced that Australians will be able to choose lower premiums for higher excess, and insurers required to more clearly categorise their policies, under the federal government’s shake up of private health insurance. The changes consumers will notice are choices to lower premiums, labels on policy packages, discounts for young people, mental health provisions and travel benefits for rural residents. Find out more here
First Gene Therapy For an Inherited Disease Could Soon Be Approved by The FDA
Last month, a Food and Drug Administration advisory committee unanimously endorsed an experimental gene therapy for patients with a rare kind of hereditary blindness, setting the stage for a historic approval of the first gene therapy cleared in the United States for an inherited disorder. The therapy involves injecting a healthy version of the RPE65 gene - responsible for making a protein needed for sight - into the eyes of patients who have defective copies of the gene. People with the dysfunctional gene are often diagnosed at an early age with disorders such as Leber congenital amaurosis or retinitis pigmentosa. They have limited vision that typically gets worse over time, resulting in night blindness and a loss of peripheral and central vision, and almost all end up completely blind. While this new treatment does not give patients perfect vision, it does produce substantial improvements. Several young study participants have reported how the experimental treatment had transformed their lives, allowing them, for the first time, to see stars and their parents' faces, and to go out at night with friends. Find out more here
. Also read about a similar clinical trial here
8th - 10th November 2017
ASID Conference: Pushing the boundaries - Tasmania
The conference aims to present an inclusive and exciting program with many opportunities for discussion and debate. Australasian Society for Intellectual Disability (ASID)’s focus is research to practice – the dialogue between researchers, practitioners, service providers, governments, families and people with intellectual disability which has the goal of finding better ways to support inclusion for individuals and to change systems. This year’s theme reflects the major challenges facing all communities who desire to realise the goals of the UN Convention on the Rights of Persons with Disabilities. In Australasia, it encompasses the issues arising from new approaches to service provision such as increased self-direction, choice and control. Find out more here
13th November 2017
National Symposium on Inclusive Education - Sydney
A leadership event for people with disability, families, educators and decision makers in the inclusive education space. People with disability/families are able to register for a fraction of the fee required for professionals to attend ($55). Find out more here
Auskick for everyone
The ALLPlay program
is about creating a culture of inclusion in sport for all children, regardless of physical, psychological, or social requirements. Check out what is happening in the Auskick program to make it accessible for all. Watch
the ALLPlay video and visit the website
NF Parent Guidebook
The NF Parent Guidebook is a home-based, 160-page resource designed to provide support and education to you and your family. It will guide you through your journey with NF and associated learning, behavioral, or social challenges. It can be downloaded in sections via the CTF US Website
One Step at a Time toilet training app
Assisting your child to acquire toileting skills can be confusing. Family and friends although well meaning can sometimes offer conflicting advice and leave you wondering if this goal is ever going to be achieved. The One Step At A Time app from Continence Victoria is a simple, practical tool that offers tips and pictures to help you and your child learn the key milestones of toilet training. It was developed by health professionals who work in early intervention programs and specialist continence support programs for children with special needs. Find out more here
The government has launched a new website and mobile app called MumSpace, an online mental health resource offering tools, apps and helplines to help reach mums in rural and regional areas. Find out more here
or go to www.mumspace.com.au
For the next eight months, Melbourne’s Southern Cross Station will be running a pilot program using existing beacon and GPS technology to connect to a navigation app on a blind person’s smartphone so they can be provided with audible directions in public spaces. Find out more here
30th October - 3rd November 2017
Gathering of Kindness
Bullying, harassment, poor staff culture and health professional stress are today's most pressing and competitive challenges. What we need to do is change the conversation between the patient and their families, carers and health service professionals. Let's talk about a kinder health system and how we may get there. By focusing the conversation towards a kind healthcare system, we can have a far greater impact. Here is the solution: Gathering of Kindness - Continue the Conversation.
You are invited to join us for a week of activities that brings people together from all walks of life to continue the conversation. This is your chance to be involved. See you at the week of events or run your own Gathering of Kindness event! Together we will design solutions which will improve the healthcare environment for everyone involved. We hope to see you there! Please visit gatheringofkindness.org
for more information.
Carers Victoria Mingle 2017
Carers Victoria invites you to Mingle with them in 2017 and discover Australia’s most extraordinary and acclaimed female magician and mentalist, Cath Jamison. Enjoy lunch, meet and greet with other local carers and find out about services, supports and activities in your local area. We know caring can be tough, so if you know another carer who needs some time out, invite them to RSVP too. Mingles are FREE events for carers. Dates in November are filling up fast, find out more and register here
Alpha-1 Antitrypsin Deficiency (Alpha-1) awareness month
Alpha-1 is a genetically inherited medical condition which can affect the liver and lungs. Get ready to be active during the month of November! The Alpha-1 Association of Australia is asking the community to get involved in November to spread awareness about Alpha-1 Antitrypsin Deficiency. There are many different ways you can participate and we encourage you to at least do one thing! Find out more here
13th November 2017
Workshop for Rare Disease Patient Groups: ‘Building Your Advocacy Capacity’
How well is your patient group advocating on behalf of your members? Learn strategies to increase your patient group voice to policy and decision-makers. This full-day workshop will help deconstruct the key elements of influencing government and how the media works; providing participants with the tools to engage with all stakeholders (government, media; pharmaceutical companies, clinicians and researchers). The workshop will look at strategies to bring your own patient community together and utilise the power of their own story to create an emotional narrative that connects. The day will provide ample opportunities for Q&A and active interaction. COST:
FREE for RVA Partners (Organisation or Individual). For more information about how to become an RVA Partner – contact firstname.lastname@example.org
or phone 0497 003 104, or complete online via the RVA Website. TO REGISTER:
contact Anne at RVA email@example.com
or 0497 003 104 ASAP. Only limited places.
20th & 23rd November 2017
Intersections of gender and disability workshops
These one day workshops aim to strengthen your awareness in the prevention of violence against women with disabilities and assist you to align your work with violence prevention frameworks. Women with Disabilities experience at least twice the rate of violence as women without disabilities and have high levels of disadvantage across all measures of social and economic participation (housing security, income, employment and education). Find out more here
14th, 21st, 28th November & 5th December 2017
Carers Victoria Dementia Program: Carers, Families and the System workshop
Are you caring for somebody with a diagnosis of dementia? To take part in our practical, interactive program, which offers clear, take home strategies for carers you need to be caring for a person who has had a medical diagnosis of dementia. The program consists of 4 sessions, each of three hours duration. Participants must attend the first session to continue in the program and cannot bring the person they care for to any of the four sessions.
What will the program cover?
- Session 1: Myths and realities Expose myths, explore realities
- Session 2: Behaviours of concern
- Session 3: Communication techniques
- Session 4: Problem solving and activities
Find out more here
Invitation for families living with rare diseases
We are inviting you to complete an online questionnaire about preconception carrier-screening. The questionnaire is part of the Australian Genomic Health Alliance (AGHA) preconception carrier screening flagship program being drafted currently. The study is being conducted by a multidisciplinary research team led by Professor Nigel Laing at the University of Western Australia (Ethics number: RA/4/1/8847).
The questionnaire should take approximately 15 mins to complete and you can complete the questionnaire on any platform including laptops, desktop, tablets or phones. Your participation will contribute towards identifying attitudes and opinions in relation to preventing severe recessive diseases through a preconception carrier-screening program in Western Australia (survey is open to all Australians however). This will help to identify future research priorities in this area. We would be very appreciative of your involvement in this important research.
The questionnaire is strictly confidential and anonymous. In order to ensure anonymity, please note that you will not be able to save your responses and return to the survey at a later stage. Please review your responses before clicking ‘next’ or ‘submit’ to send your completed survey. You will not be able to return to your responses after submitting the survey. Data from incomplete surveys will be deleted.
Please click here
to begin the questionnaire. Thank you very much for giving your time to help us with our research.
For more information about the research and how your participation is important to our study, please click here
If you have any queries or comments about the questionnaire or the research study, please contact:
Professor Nigel Laing (Chief Investigator)
NH&MRC Principal Research Fellow
Centre for Medical Research
University of Western Australia
Harry Perkins Institute of Medical Research, QEII Medical Centre, Nedlands, Western Australia 6009
Dr Gina Ravenscroft (Co-Investigator)
Centre for Medical Research
University of Western Australia
Harry Perkins Institute of Medical Research, QEII Medical Centre, Nedlands, Western Australia 6009
Do you support an Adult with intellectual disability to make decisions?
As the NDIS rolls out people with intellectual disability and their families should have more choices about the services they receive and greater control over their own lives. Effective support for decision making is increasingly important for people with intellectual disability.
La Trobe University researchers Professor Christine Bigby and Professor Jacinta Douglas have been leading research into the processes of decision making and what makes for effective support. They have developed an evidence based practice framework to guide supporters and a set of resources for supporters.
We are seeking your participation in a study that aims to trial these resources for supporters. The study involves 2x3 hours free training sessions for decision supporters (family, friend or paid supporter) followed by a series of interviews with both the supporter and the person with intellectual disability they support.
The study is supported by an Australian Research Council Linkage grant and Industry Partners.
If you are interested in participating or want to know more please contract: Dr Elizabeth Smith at firstname.lastname@example.org
or 03 94791954 or Professor Christine Bigby at email@example.com
or 03 9479 1016.
This project has ethics approval from La Trobe University. For more information click here
AGHA-AMDF Genetic Testing Partnership
Australian mitochondrial disease foundation (AMDF) are pleased to announce that, in partnership with the Australian Genomics Health Alliance (AGHA), a new research opportunity for people with suspected mitochondrial disease has become available. Through this research project, individuals who meet the appropriate entry criteria can gain access to state-of-the-art genetic testing for mitochondrial disease. The purpose of this study is to evaluate new molecular technologies (tests) which look for changes in your DNA (genetic code) responsible for causing mitochondrial disease. The results of this study will help determine the most effective approach to the diagnosis of mitochondrial disease and will hopefully aid earlier intervention and improved outcomes for patients and families with these disorders. Click here
for more information. Click here
to find out how to be referred to the study.
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.
- 4q34 deletion
- Autosomal Dominant Osteopetrosis
- Beckwith-Wiedemann syndrome
- Cat Eye Syndrome/Schmid Fraccaro Syndrome
- Cerebrotendinous xanthomatosis
- Constitutional Mismatch Repair Deficiency (CMMRD)
- Disorders of the corpus callosum
- Ehlers-Danlos syndrome coexisting with Lynch syndrome
- Emery-Dreifuss muscular dystrophy
- GGCX gene mutation
- Hajdu Cheney syndrome
- Hay-Wells syndrome/ankyloblepharon-ectodermal dysplasia-clefting (AEC) syndrome.
- Hereditary Spysiotosis with Iga Nephrophy
- Megalencephaly Capillary Malformation (MCAP) syndrome
- Milroy disease
- Mitchell's disease (Erythromelalgia)
- Moebius Syndrome
- Neutral lipid storage myopathy
- Pantothenate Kinase-associated Neurodegeneration
- Peutz-Jeghers syndrome
- Potocki-Schaffer syndrome
- Renpenning syndrome
- Succinic Semialdehyde Dehydrogenase Deficiency (SSADH)
- TRAPPC9 associated intellectual disability
- Wilson’s disease
- Wolfran syndrome
- Xp11.3-11.4 deletion
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 emailing firstname.lastname@example.org
or phoning (03) 8341 6315.
For a listing of support groups in Victoria see the links page on the GSNV website: www.gsnv.org.au
to see the GSNV calendar of events.