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Bits and Pieces June - August 2017

Contents

  • From the team
  • Support group news
  • In the media
  • Conferences and seminars
  • Resources
  • Community
  • Research
  • Seeking contact
  • GSNV Calendar

From the team

Dear GSNV community,
 
Reflection and Learning are two key commitments at the GSNV. We honour and respect the past, seeking to learn the lessons that our establishment and 20 years of operation have brought to us.

Our recent AGM was the perfect time to touch base with why the GSNV was established in the first place and to check in with how we are honouring that purpose in 2017.  We were privileged to have the wonderful Margaret Sahhar our founder, as our keynote speaker and I’d like to share her reflections with you.

Please note this is an abridged version.
… Creating Partnerships - this was the ideal we strove for and what I believe was achieved when we established the GSNV. It was the beginning of a new era in many ways in the hospital setting – the inclusion and recognition of the patient/family/parent in the whole hospital in-patient and out patient experience. It was also a recognition of the power of numbers of parents and individuals, critical for increased funding opportunities. The founding of the GSNV was truly a group effort between professionals, support groups and families.

In my first role at the Alfred, working with patients in a general surgical and medical unit, I developed a sense of understanding of the barriers between professionals and patients. I also identified and developed an understanding of the importance of reaching out to the community, including family, in the hope of providing some realistic supports and resources.

I started to move from the more traditional professional role into a more community focused family role, taking into account all the impacts on a young person’s life not just their hospital presentation and illness.

Core principles were very important in forming my values. The belief that each person is an individual shaped, not only by their immediate family experience but also their environment and the impact of their diagnosis. It is important to understand the individual narrative and to get a good comprehensive social history- much as a doctor gains a medical history in order to make a diagnosis. As the person is part of a community, the community should be involved in terms of organising appropriate supports and resources. At certain times due to circumstances we may all need extra help and this should be recognised. The importance of the individual is vital- autonomy in making decisions about treatment. The social worker is well placed to advocate for patient autonomy.

Close involvement with individuals in times of crisis, grief, suffering can have a profound impact on those standing beside the person at times of crisis. Supervision and mentoring are vital supports.

I became very aware of what I call the “continuum of care” – the need for families and individuals with a genetic condition to have continuing supportive contact not just from professionals when visiting an OP clinic but from strategic community support and the ongoing support of others with a similar diagnosis.

I recently read in Bits and Pieces this quote “Living with a genetic condition is a full time job” This sums up the challenges and indicates the importance of having multiple supports, including the GSNV, not just professional support. This became my firm belief- and we started to ensure that all newly diagnosed children were referred (if they wished) with their family to a support group. To be able to talk openly with another who has had similar experiences. Another parent can often give a more readily acceptable different perspective because they are trusted and people don’t feel judged if they voice negative emotions. Many people diagnosed with genetic conditions had no existing network for referral.

There are multiple challenges in professional contacts- all the more reason why it is important to have parent /other contact.  Some parental reactions may require ongoing counselling, but frequently the initial strong reactions of grief, disappointment, guilt, fear are dealt with. I observed how valuable parent contact was in facilitating coping mechanisms – parents reported that they felt less isolated and were able to focus on the future. There can be barriers in professional contact but together with the combination of professional and another parent these can be a powerful support.

So for me I realised that the partnership between professional and other contact could be a powerful support for newly diagnosed families. In considering how best to support families, I learnt a lot from my clients- their resilience, their wonderful humour. I realised that the parent of a newly diagnosed child has expert knowledge – doctors need to listen but also this knowledge can be imparted to others.

I became involved in facilitating the setup of new genetic support groups- some were tiny. We would set up a meeting and invite people who had been diagnosed with the condition. These meetings usually were information based with a speaker, but most importantly people attending had the chance to meet others informally and to talk and share.

As new technologies were developed that impacted patient treatment, it became apparent that a critical mass of patients increased funding opportunities and government access. Whilst I don’t have the exact numbers of support groups facilitated, it would have been over 20.

In 1996, we formed a steering committee, presented a report and secured funding from the Dept. of Health. The GSNV was born!

The role of the GSNV has expanded and flourished since those early days when the primary purpose was to facilitate new support networks, to secure funding and to educate both families and professionals. Advocacy not only of the individual, of their conditions but also of the wider ethical and practical issues remains vital.

The future – the GSNV is well placed in the era of genomics. There is an increasing emphasis on family information and the need to translate complex genetic information. There is the need to educate professionals to publish, present at conferences and to prepare educational material such as pamphlets. It is important that GSNV is represented at all levels, as they represent the family voice. They are already represented at Melbourne Genomics and at Federal and State levels.

With the increasing complexities of genetic technologies it is vital that there be this continuum of care from professionals reaching out to support networks-both educating and listening to each other.


Thank you Margaret, we remain and will remain always committed to our foundation ideals.

Monica Ferrie
Group Leader
 

Support group news

8th June 2017
Mito Connect Call 

A Mito Connect Call will be held on Thursday 8 June at 10:30am AEST. The call is an opportunity for anyone affected by mito to connect with others and share experiences. The call will be held in the morning in response to feedback from the mito community. If you would like to suggest a date or time for future calls, please contact Catherine Lucas.
RSVP by calling AMDF on (02) 8033 4113 or emailing Catherine Lucas at catherine.lucas@amdf.org.au.

16th June 2017
Down Syndrome Victoria EDSW2 and Setting Goals & Drafting an NDIS plan (0-17 years)

Keep the date of Friday 16th June.  This is an opportunity to meet other parents and gather useful information from our knowledgable staff.  The follwoing workshops will be offered:
  • Early Days Support Workshop 2 (children aged 1-6 years)
  • Setting goals - drafting and NDIS plan for all age ranges (7-17 years)
The day will include a group lunch.  Register your interest early as places are limited, email training@dsav.asn.au

17th June 2017
Very Special Kids Fashion Sale

Shopaholics take note! The Very Special Kids Fashion Sale is back on Saturday 17 June, 9am-3pm. Thousands of new ladies and mens quality clothing items, jewellery and accessories on sale at up to 90% off! Tops, shorts and jeans from $10 | Jackets, blazers, dresses and knits from $30 | Shoes from $10 | Accessories, bags and kids wear from $5! Entry is by gold coin donation and all proceeds from the sale will go to Very Special Kids. Find out more here.

20th June 2017
GSNV/Yooralla NDIS basics information session - Melbourne 

A free one hour information session on the NDIS basics facilitated by Yooralla, followed by a family perspective. Held at the Royal Children's Hospital from 12noon - 2pm. Designed for the wider community interested in the NDIS to provide an overview of how it will work. Morning tea will be provided so please RSVP here.

21st June & 13th July 2017
GSNV Supporting the Supporters meetings
At the GSNV one of our main roles is supporting support groups from inception to maturity. We believe support from your peers is highly valuable and that your peers can be a great sounding board. We understand that starting up and running a support group can be rewarding, however, it also comes with many challenges. We would like to begin a regular support group ”Supporting the supporters” event where support group leaders, or those who are thinking of starting a support group can come together for a few hours, and share ideas. Support group leaders with experience can mentor the support groups that are just starting out, but also those just beginning, can bring fresh eyes to problems that established support group might be struggling with. 
21st  June (6-7:30pm) - Topic:  Fundraising Q & A.
13th July (6-7:30pm) - Topic: Growing your support group, volunteers to paid staff. Sean Murray the CEO of the Australian Mitochondrial Disease Foundation (AMDF) will be presenting.
The meetings will be held at the Royal Children’s Hospital, Flemington Rd. Parkville. Please RSVP on info@gsnv.org.au.

24th June 2017
Mito Melbourne Support Group

A support group meeting will be held in Melbourne on Saturday 24 June. Support groups are an opportunity for members of the mito community to come together and share experiences and advice, and meet others who know what living with mito, or caring for someone with mito can be like.
More details will be provided shortly.
Date: Saturday 24 June
Time: TBC
Where: TBC
To express your interest, please email Catherine at catherine.lucas@amdf.org.au

25th June 2017
Fundraiser for the PKU Clinic at RCH - Bullen

Host: Kathy Madafferi 
Time: 1pm
RSVP to: louisa.dipietro@VCGS.org.au – Please RSVP so that we can provide venue address and collate numbers for catering. 
Entry Fee: $20.00
Please join us for the Grazing Station launch whereby all proceeds raised will be donated to the PKU Clinic at the Royal Children's Hospital, Melbourne. Entry fee includes a glass of champagne upon arrival and enjoyment of the scrumptious Grazing Station (antipasto buffet) prepared by Kathy’s Catering. Please RSVP for catering purposes. Venue address will be provided upon receipt of RSVP email. We look forward to seeing you there!



29th July 2017
SWAN Family Play Date

Play Central, Port Melbourne, Victoria
Bring the whole family to PlayCentral Port Melbourne for a free pizza and play evening. Enjoy a chat with other SWAN parents while the kids enjoy ball pits, dodgem cars, climbing walls, trampolines, slides and sensory soft play. Find out more here.

18th - 20th August 2017
Spina Bifida Foundation Victoria Ski Camp for under 18s

In conjunction with Disabled WinterSport Australia (DWA), SBFV is excited to offer another ski camp this winter. The camps are very popular and an annual highlight for many. This year the camp is for SBFV members under the age of 18, plus one adult carer (eg parent) per participant at no additional cost. Transport, meals, all ski/adaptive equipment, as well as very talented ski guides are included in the package. DWA ski guides are trained to support all types of disability and levels of confidence, to assist participants to meet their own goals in a safe and fun environment.
Where: Howmans Gap with skiing at Falls Creek
Cost: $150 per participant
+ DWA membership: approximately $85 (TBC)
Places are limited, please contact SBFV ASAP to register your interest - ph 9663 0075 or email info@sbfv.org.au.

6th - 8th October 2017
Metabolic Dietary Disorders Association (MDDA) family retreat - Kalorama

MDDA retreats are designed to be relaxed weekends away to get to know and enjoy the company of other families and members of the MDDA. The retreats will provide an invaluable opportunity for people with inborn errors of metabolism and their families to meet in a social environment and build positive relationships with other members of the MDDA community. The CountryPlace Conference Centre is an impressive venue and will set the scene for a perfect weekend away for the whole family. More details here.

13th - 14th October 2017
Fanconi Anaemia family meeting 

Registration is now open for the Fanconi Anaemia Family meeting in Melbourne (October 13-14, 2017). It is essential to register for the event for planning purposes, even though it is free to attend. More info here.
 

In the media

NDIS introduction leading to changes in what supports are funded
Family therapy which was helped Danya Wellington and her children cope with husband Bill's acquired brain injury will no longer be available under the National Disability Insurance Scheme (NDIS). Funding for this specialised therapy, which is currently delivered by the Bouverie Centre, will cease later this year, and many other families and carers are also anxious about how the 'person-centred' care model at the heart of the NDIS threatens support they currently receive. CEO of Carers Australia, Ara Creswell talks about the experience of carers as the NDIS is implemented across the country. Listen here.

NDIS Code of Conduct Consultation
The Code of Conduct is part of the new NDIS Quality and Safeguarding Framework and is been developed to ensure that all NDIS participants have the same protections, regardless of where they live in Australia. The Code of Conduct will outline expectations for providers and workers delivering supports under the NDIS and will outline the course of action taken against providers and workers who engage in unacceptable behaviours. The closing date for completing surveys and uploading submissions is 5pm (AEST), 21 June 2017. Download discussion paper, complete survey and upload submissions here.

Rights in Specialist Disability Accommodation
Tenants, families and carers in specialist disability accommodation are invited to share their views on how their rights can be protected in the transition to the NDIS. The current housing laws are not fit for the NDIS environment, as it is often hard for residents to change service providers in their home. To address this issue, the Victorian Government is asking the public how new laws should work. This includes hearing from Victorians about what they like and don’t like about the current laws, and what they would like to see happen in the future. The public consultations close 30 June 2017. You can have your say by attending a consultation in person or submitting your ideas by responding to the discussion paper or completing a survey. Go to consultation information here.

Inquiry on the care of mothers and babies 
The health, care and wellbeing of mothers and babies in Victoria during the perinatal period is being examined by the Family and Community Development Committee, which is inviting community input to its inquiry. “Our new public inquiry will be a detailed investigation of the services that are available and needed to ensure Victorian mothers and babies receive appropriate care and attention in this important period of their lives,” said Committee Chair Maree Edwards. “We are keen to hear from people across Victoria so that we get a complete understanding of the availability, quality and safety of health services being delivered to mothers and babies.” Under its terms of reference, the Committee will be considering the adequacy of services for dealing with high risk and premature births. It will also be examining access to and provision of an appropriately qualified workforce. “One of the important issues we will be looking at is the disparity in outcomes between rural, regional and metropolitan locations,” Ms Edwards said. “That’s why we’re encouraging people from across Victoria’s diverse communities to contribute their views by making a submission to our inquiry.” Community submissions are welcome until Friday, 14 July 2017. The Committee will then hold public hearings. For the terms of reference and more information visit the Committee’s website.

Victorians to get greater access to world-leading genomic sequencing tests
By Merryn Pearce from AGHA

The Victorian Government has announced it will provide $8.3m in its 2017/18 budget to fund public access to genomic sequencing tests for Victorian children and adults. This funding means Victorians will have access to clinical genetic consultations, genetic counselling, multi-disciplinary care, and genomic sequencing currently not funded under Medicare. The clinical care will largely be provided by specialists at The Royal Children’s Hospital and Monash Children’s Hospital and genomic sequencing conducted by accredited laboratories. See the original news release from the Victorian Government here.

$26 million dollar boost in funding for clinical trials
The Australian Government recently announced that they will provide $33 million to fund world-leading medical research trials and fellowships, supporting doctors and scientists to uncover the next breakthrough and improve the health of all Australians. Through the Medical Research Future Fund (MRFF), $13 million will be used to support research into a number of public health areas which contribute to the highest burden of disease, including the application of precision medicine. The MRFF will also inject $8 million to support the next generation of Australian researchers – including a major boost to the number of National Health and Medical Research Council fellowship schemes. The Australian Clinical Trials Alliance will receive $5 million to support their work in ensuring Australia maintains its world-leading clinical trial standards and continues to support the clinical trials sector. To create a better collaboration, the Turnbull Government is also providing $7 million over four years to help redesign State and Territory clinical trial operating systems. Read more here and here.

Gene therapy for retinitis pigmentosa trial
Retinitis pigmentosa affects 1 in 4000 people, with symptoms that typically appear between age 10 and 30. Night vision and peripheral vision go first, as the photoreceptors active in low light – the 'rods' – start to degenerate. Eventually the condition also affects the 'cones' – the photoreceptors responsible for central, detailed, colour vision, causing complete sight loss. Loss of sight occurs because a gene responsible for maintaining the light sensitive cells at the back of the eye contains a genetic fault. Last month, a 29-year-old man in the UK became the first person in the world to undergo a procedure that uses gene therapy to reprogram the faulty gene. Read more here.


Conferences

7th June 2017
Eastern Region Our Choice Expo - Wantirna South

This expo is for participants, families, workers & others who may be interested in learning more about how the NDIS will work, community options & the services/supports available through the NDIS. This is an important opportunity for the Eastern Metro Area, which is transitioning to the NDIS from the 1st of November this  year.
Time: 10:30am - 4:00pm
Contact: Christine Scott
Phone: (03) 9416 4003


22nd - 23rd June 2017
Volunteering Victoria 2017 State Conference - Melbourne

WHERE: Rydges Hotel, 186 Exhibition St, Melbourne VIC 3000
The inaugural Volunteering Victoria State Conference is expected to attract over 200 volunteering leaders over the two days in June 2017.  With the goal to challenge, inspire and empower, the multi-streamed conference agenda will cover topics related to the theme – The Power of Association – and will be conducted with an emphasis on audience participation utilising a contemporary meeting format. Find out more here.

16th - 17th August 2017
Belonging Matters' Conference - St Kilda

Community is an important place. It’s where we learn, develop relationships, reach our potential and discover our moral compass. However, even though it’s automatically assumed for most people, we still exclude and marginalise people with a disability and others. This conference creates a welcoming space where people with disabilities, their families and friends, together with professionals, educators, students, advocates, organisations, government employees, support workers, Local Area Coordinators, planners, and community members can find a forum to connect, learn and share wisdom about community, diversity and belonging.
Register and more information.


26th - 29th August 2017

12th National Allied Health Conference - Sydney

The theme is “Allied Health: Stronger Together” and the event will provide a forum for all sectors of Allied Health to envision a truly integrated health care system that delivers seamless, holistic care. The conference will explore a range of topics of interest to the private sector, public health services, non-government organisations and health administrators. Delegates will consider the challenges posed by major health reforms such as the NDIS, the management of chronic disease, and the interface between acute and primary care. Find out more here.


Fabry Australia would like to invite interested members to our annual patient face to face meeting in September 2017. The Conference will include speakers from different areas of the Fabry community including medical Fabry experts from Fabry Centres of Excellence in both adults and paediatrics with the idea of bringing newly diagnosed patients together to gain valuable information and support. The Conference will be held at Novotel, St Kilda, Victoria. Focus will be on bringing newly diagnosed patients together with other patients to share experiences. The speakers will be focussing on many areas of living with Fabry from supporting care givers to how to navigate the medical system with a new diagnosis through to any new treatments that are being developed. To keep up to date with how the conference details are progressing please follow the Fabry Conference link.

15th September 2017
Strengthening Disability Advocacy Conference - Melbourne

Getting into gear for the NDIS journey will feature a keynote address and facilitated panel discussions looking back on the journey so far, how well the principles of choice and control are being embedded in NDIS policy and processes and what road blocks to avoid on the road ahead. This conference is for anyone who is interested in strengthening and upholding the rights of people with disability. Find out more here

4th - 6th October 2017
World Congress on Genetic Counselling - UK

Advances in genomic sequencing technology are promising a revolution in how diseases are diagnosed and treated.  Understanding how these advances are managed and communicated to patients, families and wider society will benefit from empirical genetic counselling research. This new conference will provide a forum that facilitates active engagement between international researchers and practitioners to explore the evidence that guides genetic counselling and the communication of genetics in mainstream medicine, thereby enhancing clinical practice. More info here.

20th October 2017
2017 Inaugral NF Clinical Symposium - Sydney

The Children’s Tumour Foundation along with Whiteley Medical, is proud to announce the Inaugural Neurofibromatosis Symposium in Australia, to be held in Sydney on 20 October 2017. This event is being held specifically to enable the development of a more cohesive approach by clinical specialists to NF in Australia. This meeting will allow the various clinical specialties to dialogue over the latest research and clinical recommendations of treatment for Neurofibromatosis (NF). It is anticipated that this will become a regular event on the NF calendar. Read more here.
 

Resources

Mito Quilts of Hope Australia
It can be a traumatic and lonely time for sufferers and their family being diagnosed or having a child diagnosed with mito. Margaret Cuthbertson, as well as her two adult children, suffers with mito. This experiences inspired her to start the Mito Quilts of Hope project in Australia in 2014 with help from the North of the Yarra Quilters Guild. The Victorian group, modelled on a similar one in Canada, hopes to raise public awareness of mitochondrial disorders and provide comfort for mito patients.

The thought is that each stitch brings hope for treatment and a cure, while each completed quilt provides warmth and comfort for someone who is ill. The quilts come in either adult or cot size. “We send sufferers a beautiful quilt so they know we are thinking about them. It’s something special that’s been made with them in mind”, says Margaret.

If you would like a quilt or know someone who might like one, please contact quiltsofhope@amdf.org.au or ring the AMDF office on 02 8033 4113

Metro Trains Text Messaging Assistance Service
Metro Trains is committed to continuously introducing options to ensure an accessible journey for everyone. Customers with communication difficulty or disability will now be given another option for obtaining information through the introduction of a text messaging assistance service. The service will be launched as a 3 month trial from 1 May and will be available during Flinders Street InfoCentral staffed hours (7am – 7pm weekdays, 9am-5pm weekends and public holidays). The service should be used for general enquiries related to Metro Trains and information on service changes. In emergency situations at the station or on the train, please seek staff assistance in person or via the emergency button, or contact emergency services.
Text:  0428 789 329

Free NDIS appeals assistance
The NDIS Appeals has been set up to ensure that all people with disability, and others affected by reviewable decisions of the National Disability Insurance Agency (NDIA), have access to support when they are seeking review of those decisions in the Administrative Appeals Tribunal (AAT). Find out more here.

'Moe’s Sick Kidneys' 
An informative illustrated book for children four to eight years old, that can be used to help explain Kidney Disease to children. Find out more here.

You Can't Ask That - Series 2 Facial Difference
You Can't Ask That asks people with facial difference the awkward, inappropriate or uncomfortable questions you've always wanted to know the answers to, but never had the guts to ask. View the episode here.
 

Community

8th June 2017
Successful partnering with funders and other organisations 
training
People and organisations like success and actively seek to align themselves with it. This session will help you to understand what it takes to be a good partner for funders, other community organisations and your members. Find out more here.

14th June 2017
Inclusion, Diversity & Leadership - Facial Difference - a different look workshop

This session will discuss:
  • How to encourage young people who have a disability/facial difference to be proud of themselves
  • How to be more inclusive/empower teachers and students to enable positive change
  • How to reduce casual albeism in schoolyard language
  • The experience of being a student with a facial difference.
Facilitator:  Carly Findlay is an award winning writer, speaker and appearance activist.  She writes on disability issues for publications including ABC, Daily Life and SBS.  She was named as one of Australia's most influential women in the 2014 Australian Financial Review and Westpac 100 Women of Influence Awards. She has appeared on ABC's You can't Ask That and Cyber Hate with Tara Moss. More info here.
For non-member registrations, please contact Anne Huggins at anne.huggins@aeuvic.asn.au or 03 9418 4847.

20th & 21st June 2017
To Stand Beside - Advocacy for Inclusion Training Program

The advocacy training program is a two day intensive workshop aimed at disability support workers, family members, planners, coordinators, managers, paid or unpaid advocates who are involved in supporting, assisting or representing people with disabilities.
You will gain a:
  • greater knowledge of advocacy concepts and principles
  • deeper understanding of personal values
  • greater appreciation of the advocacy role inherent to all who work in the disability sector
  • greater awareness of the potential conflicts of risks inherent to the advocacyc role
  • stronger framework for dealing with advocacy-related issues
  • "tool box" full of practical ideas/strategies
The two day workshop will run from 9.30am - 4.00pm. Register here.


28th of June is International PKU Day Like many rare diseases, it is a characteristic of Phenylketonuria that the general public is not sufficiently informed on the disorder and the needs of patients.

At the ESPKU Delegates Meeting 2013 in Antwerp, it was decided to initiate the International PKU Day, taking place annually on June 28th. This is quite a special day because, not only is it nicely in the middle of the year but also, it is the birthday of two stalwarts of PKU, Robert Guthrie (1916-1995) and Horst Bickel (1918-2000).

Regional, national or international associations, individuals like patients and their relatives, health care providers, public bodies such as insurance companies, food producers and other industries in the field of PKU – everybody is invited to organise events or activities that appeal to the general public and raise awareness of PKU. Find out more here.

30th June 2017
What governance means for your organisation training

Governance is the system of checks and balances for leaders of not for profit organisations, which help them steer the organisation. Good governance leads to positive Board member experience, proper management of conflicts of interest and risk, good understanding and planning for financial controls and an organisation that thrives even through adversity. Find out more here.

8th August - 12th September 2017
Magic Hands - Beginners AUSLAN

Learn the basics of Australian Sign Language, Auslan. Geoff Riding and Luke King will be teaching how to converse in everyday Auslan, such as how to introduce yourself and other kinds of magic. Learn a visual language!
What? Introduction to Auslan (6 week course)
When? Tuesday Evenings 6:00pm – 7:30pm
Where? Schoolhouse Studios, 81 Rupert Street, Collingwood 
Cost? $175.00 + BF
For more information and tickets, please click here.

17th - 23rd September 2017
Global Mitochondrial Disease Awareness Week

Global Mitochondrial Disease Awareness Week is a week marked with educational, fundraising and advocacy efforts designed to raise awareness about mitochondrial disease (mito). For the second year, #Lightupformito, will run. The event will see monuments around the world lit up green to raise awareness. This year, the event will attempt to break the world record for the most monuments lit up in a 24 hour period. On 16 September, the following Australian monuments will be lit up for #lightupformito:
Darling Quarter (NSW)
Telstra Tower on Black Mountain (ACT)
Old Parliament House (ACT)
Perth Council House (WA)
Deakin University (VIC)
The Drum Theatre (VIC)
You can be a part of the world record attempt and raise awareness about mito by getting involved. If you can help secure a monument to be lit up in your area, contact rebecca.davis@amdf.org.au
 

Research

Research into Effective Support for Decision Making 
Everyone has the right to participate in the decisions about their own life. Researchers at the Living with Disability Research Centre at La Trobe University are looking at ways to improve decision making support for people with cognitive disability (intellectual disability or acquired brain injury).  They want to trial some evidence-based resources to support decision making and understand the experience of giving and receiving support. They are seeking people to participate in the study. Participants can be people with cognitive disability and those who regularly support them to make decisions. Supporters can be friends, family members or paid workers. Call Dr Lizzie Smith on 03 9479 1954. More info here.

Genetic Information Needs of People Who Have Been Adopted: Adoptee Perspectives
We are currently conducting a research project looking into the experiences of people who have been adopted in relation to genetic information. This research project is being conducted as part of a minor thesis for the Masters of Genetic counselling by Tiffany O’Brien.

We would like to invite members of the public who have been adopted to participate in this study. Participation in this study will involve an interview which will take approximately one hour. In this interview we will be asking about the experiences and insights of people who have been adopted in relation to family health history information and genetics.

Through this research we hope to gain some understanding into what people who have been adopted know about their genetic information and what they would like to know. We hope that this research can be published and will help genetic health professionals assist people who have been adopted.

Participation is the study is completely voluntary. Interviews will be conducted at a time that is most convenient for participants. Interviews can be done face-to-face at the Royal Children Hospital or over the telephone at a pre-arranged time. The information that is collected will be used only for the purposes of the research project.

The responses will be de-identified and only the interviewer will have access to identifiable information. This information will be kept at the Genetic Support Network of Victoria (GSNV) for a period of 5 years from the last publication and will then be destroyed. The study has been approved by the Human Research Ethics committee of the University of Melbourne.
 
If you would like to participate in this study or would like further information, please contact the researchers by ph: (03) 8341 6315 (GSNV) or email: tiffanyo@student.unimelb.edu.au
 
The researchers involved in this study are:
Keri Pereira (Prinicipal Researcher)
Genetic Support and Education Co-ordinator
Genetic Support Network of Victoria
 
Dr Jan Hodgson (Responsible Researcher)
Co-ordinator of Master of Genetic Counselling
University of Melbourne
 
Margaret Sahhar (Co-Researcher)
Clinical Associate
Victorian Clinical Genetics Services
 
Tiffany O’Brien (Student Researcher)
Master of Genetic Counselling Student
University of Melbourne

Pain awareness study
Do you support someone with severe or profound intellectual disability? Scope need your help for a study they’re conducting to improve pain awareness and management. Specific eligibility criteria apply, and participation is voluntary and anonymous. Find out more on the website here.
 

Seeking Contact

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
  • Arthrogryposis
  • Autosomal Dominant Osteopetrosis
  • Beckwith-Wiedemann syndrome
  • Cat Eye Syndrome/Schmid Fraccaro Syndrome
  • 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
  • Neutropenia
  • Pantothenate Kinase-associated Neurodegeneration
  • Polymicrogyria
  • Potocki-Schaffer syndrome
  • Renpenning syndrome 
  • Schizencephaly
  • Succinic Semialdehyde Dehydrogenase Deficiency (SSADH)
  • TRAPPC9 assoicated intellectual disability
  • 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 info@gsnv.org.au 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
 

Calendar

Click here to see the GSNV calendar of events.

CONNECT WITH US


OF THE

Anyone can become a member of the GSNV, and we'd love to have you on board too. Our current members include:
  • support groups
  • individuals and families impacted by genetic conditions
  • health professionals
  • students
  • interested individuals
  • members of the community
The membership fees are used to fund the GSNV Small Grants program that supports the vital work of support groups who are often under resourced and in need of a helping hand.
 
BI-ANNUAL PRINT NEWSLETTER
  • Keeps members informed and updated
  • Includes research, resources, services, and policy updates
PEER SUPPORT TRAINING
  • The GSNV runs peer support training every year, and is free to financial members
SUPPORT GROUP SUPPORT
  • The GSNV assists with facilitated support group training
  • Support with setting up, incorporating and developing governance
  • Volunteer support and access for projects
  • Accessing resources
ACCESS TO MEMBERS ONLY RESOURCES ON THE GSNV WEBSITE

Find out more here.

The Bloody Long Walk 


The Bloody Long Walk is a national series of seven 35km fundraising challenges to cure mito. Walk, jog, or run through some of Australia’s most spectacular scenery. Last year nearly 10,000 people participated. This year, invite your friends and family and help make this the biggest Bloody Long Walk yet!
 
Brisbane – 13 August
Sydney North – 27 August
Perth – 10 September
Adelaide – 17 September
Melbourne – 15 October
Canberra – 5 November
Sydney East – 12 November
 
Register your interest at bloodylongwalk.com.au and be the first to hear when registration opens!

NDIS events


The National Disability Insurance Scheme (NDIS) provides tailored individualised support to Australians with disabilities, as well as their families and carers.

The scheme aims to enable people to exercise more choice and control in their lives, through an individualised funding model that correlates with their ongoing disability support needs.

The National Disability Insurance Agency (NDIA) holds regular information sessions on the NDIS. These events are free to attend.

Click here to view upcoming NDIS events in your area.

First Step FREE Webinars


Are you in the early days of the journey with your child with a disability?

The First Steps workshops are for parents of children with a disability in the early years before school.

These FREE workshops will help you to understand how the funding works, learn more about services and supports, meet other parents and build confidence. 

Find out more here.

Leukodystrophy fundraising event


On Saturday 17 June 2017, Geelong Supercats Basketball Club will hold a fundraising event before & during the two basketball games for the Long Walk for Leukodystrophy.

The women’s game starts at 5-00pm & the Men are at 7-00pm, at the Arena in Victoria Street, North Geelong.

During the game members of the Geelong Corio Bay Lions Club will be shaking cans to raise much needed funds.

For further information, please contact Morris Pieper,
Chairperson, Long Walk for Leukodystrophy Committee:
0430 279 808 or email.

Introduction to the Human Rights Charter


The Charter of Human Rights and Responsibilities sets out the basic rights, freedoms and responsibilities of all people in Victoria. It is about the relationship between government and the people it serves.

Attend this session for a comprehensive overview of obligations placed on the public sector and local government to protect and promote the human rights in all aspects of service delivery.

Tue 20th June 9:30am–12:30pm
Level 3, 204 Lygon Street Carlton

Provider/Organiser: Victorian Equal Opportunity and Human Rights Commission 
Cost: $330 incl. GST
Phone: (03) 9032 3415 

Undiagnosed Through a Mother's Eye book


Through a Mother's Eye is my photographic journey; it is a constructed dreamlike reality that weaves together my personal experience of having ill children, the emotional turmoil felt by both myself and my children, and the experiences of not knowing what is threatening my children’s lives. The series reveals the complexity that undiagnosable, and life threatening diseases present to not just our family, but all families from one day to the next, as well as the challenges of the unknown and unexplained. To understand, through my eye's, what it looks like to watch my children fight for existence.
 
The book includes both fine art and photojournalistic images, and is a therapeutic journey designed for anyone who has been touched by a seriously ill child.  The images are created beautifully in photographic dreamscapes, drawn from not only moments of hope, but also from moments of darkness.

270mm x 230mm and 44 pages long, printed on art paper.  The photographic book is beautifully presented with perfect binding and contains never seen before images of Jenna and Jayda's journey, Volume I.
 
$29.00
Proceeds from every book sold will go to funding Jenna and Jayda's Liver Bear for seriously ill children, and Syndromes Without A Name.

Advocacy Sector Conversations Forum



This forum series provides a space for advocates to gain practical information and share knowledge by participating in topical, interactive sessions. It’s more imperative than ever to keep abreast with the ever changing disability services and supports landscape with the introduction of the NDIS and to understand the impact this will have on the practice of disability advocacy.

The topics will be self managed supports versus agency managed supports in the NDIS, how family violence affects people with disability and child protection standards.

DARU will also be launching the much anticipated Disability Advocacy By the Numbers 2012-2016 report and exciting new project.
 
Tue 21st Nov, 2017: 11:00am - 4:00pm, Melbourne

Register online

Westpac Foundation’s 200 Community Grants


To celebrate Westpac’s 200th anniversary, Westpac Foundation will double the amount of Community Grants on offer this year, providing 200 grants worth $10,000 each. This is the Foundation’s largest Community Grants program ever, to help local community organisations around the country work towards a fairer, more inclusive Australia.

A record $2 million in funding is now available, and not-for-profit organisations that seek to tackle complex social issues by providing education, employment opportunities and improving the quality of life of Australians experiencing disadvantage are encouraged to apply.

Applications close 9 June 2017.

Find out more here.

NDIS Understanding workshops


The National Disability Insurance Scheme (NDIS) Understanding workshop series is for people with disability and their families. Funding received through the Victorian Government’s NDIS Transition Support Package means the workshops can be run free of charge across key regional areas in Victoria over the next few months.

The NDIS is coming and this is a great opportunity to gain in depth understanding of how it works and, more importantly, how to make it work for you.

The workshops consist of 6 half day sessions run over 3 days. Participants can register for all or some of the sessions. 
 
30th May - Thu Jun: Wodonga
7th Jun - 9th Jun: Horsham
20th Jun - 22nd Jun: Box Hill
27th Jun - 29th Jun: Hamilton 

Cost: Free for people with disability
More info here.

NF Community Events


June
 
7 Illawarra NF Sippers (NSW)
21 Hobart Information Evening (TAS)
22-23 NF get together in Launceston area (TAS)
24 Gippsland NF Support Group meeting (VIC)
25 NF Family Fun Day at Caversham Wildlife Park (WA)
26-29 Darwin and Alice Springs NF family meetings (NT)   
Find out more here.

Variety Grant Round Now Open


Variety are pleased to announce that the second Variety Grant Round for 2017 is now open!

Variety – the Children’s Charity helps children and their families with financial support for things like wheelchairs, walkers and other specialist equipment when they can’t afford it, and when government assistance isn’t available.

For families of children who are sick, disadvantaged or who have special needs, finding support can be a challenge. Each year, thousands of these children and their families turn to Variety for support when they need it most.

If you or someone you know is struggling to cope, or your school organisation needs assistance, Variety is here for you.

Visit the website or give their friendly team a call on (03) 8698 3900.

Wheelchair Life Skills Workshop  


Do you sometimes find it difficult to navigate your wheelchair safely?

Would you like to gain more independence and move more freely with your wheelchair?


Richard Colman is a Paralympian and World Champion athlete who has travelled to over sixty countries. Richard has developed many invaluable life skills and is now a qualified Trainer to assist and empower people to become more independent.

Richard has developed a Wheelchair Skills Workshop for both adults and children, where you will learn such skills as:
  • Wheelchair balance development
  • Pushing over rough surfaces
  • Pushing over steps and stairs independently or with minimal assistance
  • Falling safely out of your wheelchair
  • Pushing and controlling your wheelchair up and down steep ramps
  • Safe transfers
Each workshop is limited to 4 participants to ensure the skills are taught at each individual's pace.

The next 4 session workshop will be run on the following dates:
June 10th; June 24th; July 8th and July 15th - 10am to 12pm

The workshop is held at:
Spinal Gym and Basketball Court
Royal Talbot Hospital
1 Yarra Boulevard, Kew
Cost: $20 per session. 

To receive the full benefit of the workshop, it is highly recommended that all four sessions are attended

Please RSVP by calling 9663 0075 or by email programs@sbfv.org.au by June 2nd, 2017

If you are not able to attend this upcoming workshop, there will be holding more sessions in the future. 

COMMUNITY CHOICE RAFFLE TICKETS


SWAN is participating in the 2017 People's Choice Community Lottery. Tickets are available online: People's Choice Lottery - Syndromes Without A Name until 31 August.

Tickets cost $2.00 each and SWAN gets to keep the full ticket price of every ticket sold.

There are some great prizes with over 150 prizes to be won. Thanks in advance for supporting our fundraising event. 

A Walk in the Park


A Walk in the Park is the one day in the year where you can join over 3,000 people and help improve the lives of people with Parkinson's.

This leisurely walk meets at Federation Square and takes place along the banks of the picturesque Yarra River. The day includes free entertainment, live music, fun activities and a traditional sausage sizzle.

27 Aug 2017, Federation Square

Find out more here.

Men's Health Business Breakfast


Come along to the annual Men's Health Business Breakfast and kick off International Men's Health Week with some truly inspiring stories! 

Key note address by Geoff Huegill: 
Get the inside story on the greatest comeback in Australian sporting history — and what it can mean for you. Geoff Huegill tells the story of his life, from world champion swimmer and world record holder, to the depths of despair and depression during his retirement. Geoff will share an honest and raw account of how he transformed himself from lost soul to national hero and explain how anyone can use these principles to be their best.

MC Richard Stubbs: 
Fresh from the Melbourne Comedy Festival, this legendary Australian comedy icon will be sure to entertain as host of this year's Breakfast.

14th June

Find out more here.

Bowel Cancer Awareness Month


Bowel Cancer Awareness Month is an annual initiative of Bowel Cancer Australia running throughout the month of June (1-30), to raise public awareness of a disease that claims the lives of 80 Australians every week.

Website.

National Carer Counselling Conference


The only conference of its kind where professional practitioners (counsellors, psychologists, and social workers) from across Australia will come together to focus on the therapeutic and counselling approaches demonstrated to be effective with unpaid family and friend carers.

19 October

More info here.

To Stand Beside
Advocacy for Inclusion Training Program


The advocacy training program is a two day intensive workshop aimed at disability support workers, family members, planners, coordinators, managers, paid or unpaid advocates who are involved in supporting, assisting or representing people with disabilities.

You will gain a:
  • greater knowledge of advocacy concepts and principles
  • deeper understanding of personal values
  • greater appreciation of the advocacy role inherent to all who work in the disability sector
  • greater awareness of the potential conflicts of risks inherent to the advocacyc role
  • stronger framework for dealing with advocacy-related issues
  • "tool box" full of practical ideas/strategies
The two day workshop will run from 9.30am - 4.00pm. Monday, 17th and Tuesday, 18th July 2017

You can register here

Changing Places Going Places forum


Martin Foley MP, Minister for Housing, Disability and Ageing will open this forum, which will share information about Changing Places facilities and the positive social inclusion impacts they are having in the community.

The Victorian Government, through its State Disability Plan 2017-2020, is committed to applying universal design approaches across a range of infrastructure, programs and projects to ensure they are accessible to all Victorians. The forum will showcase best practice Changing Places facilities, which are larger than standard accessible toilets to meet the needs of people with a disability and their carers.

Provider/Organiser: Department of Health and Human Services
Wed 14th Jun, 2017: 9:30am – 2:30pm, Richmond.

Register and find out more.
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