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Bits and Pieces April 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,
 
As you know advocacy is a key platform of the GSNV in our efforts to ensure that all people can flourish.
 
We have a number of different ways that we engage in advocacy and I’d like to share with you some recent activity regarding launching our Lived Experience Advisory Group, our inaugural ‘’Supporting the Supporters’’ meeting, and the National Genomics Policy Framework consultation.
 
The GSNV Lived Experience Advisory Group
Our Lived Experience Advisory Group has been formed to ensure that the GSNV is always listening to those living with genetic conditions, and engaged with the challenges and opportunities that can be faced.
 
Our group will commence in April this year and I am really looking forward to introducing you to group members, and connecting you all with the discussion and learning generated by this group.
 
This group will strongly influence the advocacy agenda for GSNV in 2017, and will be lead by the wonderful Louisa Di Pietro.
 
Supporting the Supporters Network
We also recognise that it is critical to engage with the people and organisations supporting people with genetic conditions, and have recently established a ''Supporting the Supporters'' network group.  It was terrific to get together with support groups to discuss common challenges, what works well, how we can work better and more effectively together, and where resources and knowledge can be shared.
 
We established a list of our greatest challenges and identified some ways to work on them together.
 
I would like to thank those support groups that attended our inaugural meeting for the honesty and positivity that was so evident at the meeting. I invite all support groups to join us at our next meeting. We’ll be advising the date very soon and it’s our intention to hold these meetings quarterly. I know that not everyone can get to meetings so we have people dialing in as well.
 
It is my intention to also meet our support group members and will be organising time to catch up with you personally over the year ahead. You’ll see these catch ups summarised and reported in Bits and Pieces, so we can keep sharing our knowledge.
 
THE NATIONAL HEALTH GENOMICS FRAMEWORK
On Monday 20th February, I attended the Melbourne consultation of the National Health Genomics Policy Framework.
 
This session was very well attended by a diverse representation from the health sector, and people with an interest in the evolution of the health sector for Australians.
 
It was a highly interactive session, facilitated to maximize the expertise and experience of the attendees through a workshop format.
 
The consultation workshopped the framework through a series of questions explored by each table.
 
Questions included:
  • What do you believe should be the key focus areas in the nominated Priority Areas?
  • What is missing from the framework?
  • What will it take to deliver it?
  • What could possibly go wrong if we adopt this framework?
  • What should be mandated to support the framework if we had the power to do so?
General feedback was also encouraged.
 
Feedback was sought and shared across the group, with each group reporting its response to the questions.
 
Question 1 - What do you believe should be the key focus areas in the nominated Priority Areas?
All groups acknowledged that all identified priority areas are important, however, commonly identified that the three most important areas are:
  • Integration of genomic knowledge into person-centred healthcare, supported by equity of access to services
  • Sustainable investment in health genomics
  • A skilled and literate genomics workforce
Question 2 - What is missing from the framework?
It was generally agreed that the framework does not identify links with the international genomics environment strongly enough.
 
It was suggested that the framework should reference indigenous health explicitly.
 
Question 3 - What will it take to deliver it?
The following key areas were highlighted by all groups
  • Community involvement
  • Ongoing commitment from a bi-partisan political approach over subsequent budget cycles
  • Funding
  • Collaboration between states, private and public sectors, health services within states
  • Strong links to international research and developments
Question 4 - What could possibly go wrong if we adopt this framework?
The groups discussed the issues of discrimination and inequity as potential challenges.
 
The concern regarding the implications of changes in political leadership at the national level were also discussed.
 
It was identified that time and timing particularly in skill development was not necessarily aligned to the aspirations of the framework so this would need to be explored in more detail.
 
Question 5 - What should be mandated to support the framework if we had the power to do so?
Two very strong areas were nominated here. Responses included:
  • Collaboration
  • Consumer consultation
General Feedback
The point was made that the language of the framework is essentially uninspired and flat. This was identified as problematic in captured the interest of politicians and the public.
 
All participants acknowledged the opportunity to be involved and to offer comments and feedback as positive and worthwhile
 
There are many ways that our collective voice can benefit each other and those we serve.  You are always invited to engage with the GSNV, and let us know how we can be of service to you.
 
First quarter done and onto the next one – can you believe it?!...
 
Monica Ferrie
Group Leader
GSNV 
 

Support group news

19th April 2017
GSNV Volunteer Orientation 

Time: 10:30am – 12:00pm
Place: Murdoch Childrens Research Institute, Flemington Road Parkville (Tram 55 or 59, Stop 19). Meet at MCRI Reception (smaller entrance to the right of the main Royal Children’s Hospital entrance on Flemington Road).
 
This will be an opportunity to hear more about the GSNV and the Volunteer Program, as well as learn about the role of a volunteer. We have a range of great guest speakers lined up, including representatives from Carers Victoria and the Master of Genetic Counselling course, to talk about the benefits of volunteering and how to get the most out of your experience. Morning tea will be provided.
 
Program:
10:30am Arrive at MCRI reception
10:40am Monica Ferrie - Welcome and introduction to the GSNV
10:50am Jan Hodgson - Master of Genetic Counselling course coordinator - Introduction to the course and how to apply
11:00am Jennifer Daddow - Carers Victoria – Self-care for carers
11:20am Abigail Elliott - Volunteering Victoria – Volunteer rights and responsibilities
11:30am Emily Webster - Very Special Kids – Experiences volunteering with VSK
11:40am Morning tea.
 
We look forward to seeing you there. Please RSVP (info@gsnv.org.au) by the 12th of April. Please also let us know if you have any dietary requirements.



27th & 28th April 2017

DSVC2U Ballarat 

The team from Down Syndrome Victoria will be visiting families from Ballarat and surrounds on 27th & 28th April. The plan is, to meet for dinner at a local pub with families’ on the Thursday night (27th) then conduct some information workshops for families at Pinarc offices on Friday (during the day). Topics to be advised, but may include: Early Days Workshops (pre-school age), Navigating the school years, transition to secondary school etc. (please feel free to email us to suggest topics). More info here.

28th - 30th April 2017
HFV Community Family Camp - Anglesea 

HFV invites all members to attend our 2017 HFV Community Camp (formerly known as The Family Camp). We hope you and your family can join us for all the fun and exciting activities and for the opportunity to connect with other HFV families. Find out more here.


20th May 2017
AXYS (Australian X&Y Spectrum Support) AGM and information seminar - Melbourne 

10am - 3pm, HELP Precinct, Royal Children's Hospital, Melbourne. Meet others, find out about latest information. Sessions for men and parents. Families and health professionals welcome. Key sessions will be made available for interstaters - please get in touch for details.

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

A free one hour information session on the NDIS basics facilitated by Yooralla, held at the Royal Children's Hospital from 12noon - 1:30pm. 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.
 

In the media

Researchers in Australia have designed a specialty shoe insole that may help people living with MS walk more easily
An Australian lead research team have designed a specialty shoe insole that may help multiple sclerosis (MS) patients walk and go about their daily lives with more assurance and ease. The insole is textured to stimulate receptors on the soles of the feet, and may improve gait. The researchers are currently looking for people with MS to test these insoles. Find out more here.

Australian researchers find a gene involved agenesis of the corpus callosum (ACC)
A team lead by researchers at the Murdoch Childrens Research Institute, have discovered the first gene (DCC), when disrupted, leads to agenesis of the corpus callosum (ACC), which causes the loss of the bundle of nerve fibres connecting the brain’s two hemispheres. ACC can cause intellectual disability, autism and cerebral palsy, however, some people are unaffected or only mildly affected. Researchers found that mutations in DCC usually lead to the more milder symptoms. Currently when ACC is found by ultrasound, about 80% of the pregnancies are terminated. The new discovery offers parents the option of additional genetic tests that could reveal a relatively benign prognosis. Find out more here and here.

Abortion and medical termination decriminalised in the Northern Territory
Last month, The Northern Territory government has voted to legalise the medical termination of pregnancy and passed law decriminalising abortion. Under the new legislation women in the Territory will now also have access to the abortion pill RU486. Prior laws in the NT stated that abortions were only allowed to be performed after a women was assessed by two medical practitioners, either an obstetrician or a gynaecologist. Only two hospitals in Darwin, and one in Alice Springs were equipped to carry out the procedure. Read more here.

Victorian Clinical Genetics Services provides answers for 100 children and their families
VCGS is one of only a few pathology providers in Australia to receive accreditation from the National Association of Testing Authorities (NATA) for its whole exome sequencing service, known as “Clinical Exomes”. With this new test, patients and their families are now getting answers to serious and debilitating health concerns that were previously unsolved. Last month, VCGS celebrated a milestone of 100 Australian families who now have an answer for their child’s previously undiagnosed genetic disorder. "Some of the diagnoses made have meant a change in care which is a significant benefit for children and their families. In some children, ineffective treatments were stopped, while in others, we have been able to put in place early monitoring for related health complications.'' Read more here.


Conferences





20th - 21st April 2017
Melbourne Genomics Variant curation workshop

Registrations are now invited for a two-day instructive 'hands-on' workshop on germline variant curation. Places are strictly limited, and attendance is required for the entire two-day program. Register your interest here.

21st - 23rd April 2017
The Chromosome 18 Registry & Research Society Conference - QLD

The Chromosome 18 Registry & Research Society Conference will be held 21st to 23rd April 2017 at the Novotel Twin Waters Resort, Mudjimba Beach QLD Australia. Guest speakers include Dr Jannine Cody, the founder of the Society and the Chromosome 18 Clinical Research Centre and Dr Dan Hale, Endocrinologist with the Clinical Research Centre. This will be an opportunity for families and individuals affected by a chromosome 18 disorder eg 18q-, 18p-, Ring 18, Tetrasomy 18, Trisomy 18, Pitt-Hopkins syndrome to network. Health and medical professionals are welcome  to attend. For enquiries and registration information please email  admin@chromosome18.org.au  or  +61.2.9580-5707 or +61.400809366


26th - 28th April 2017

GeneMappers 2017 Conference - Geelong

In the past, The GeneMappers Conference has focused on approaches for the genetic dissection of common human diseases. The next GeneMappers will expand this theme to include genomic analyses of host-pathogen relationships, and other organisms as it relates to human disease and clinically relevant traits. We will look towards the future: with mechanism of gene action and translation of genetic research themes of particular interest. More info here.


6th - 7th May 2017

Connections 2017 - Melbourne

Save the date for the Disorders of the Corpus conference organised by AusDoCC.


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.


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.
 

Resources

Newly updated First Trimester Screening Module
First trimester screening in general practice learning module for health professionals, provided by the NSW Centre for Genetics Education. 

Genetic Counselors and You Webinar Series
Sponsored by the National Society of Genetic Counselors (NSGC), the webinars are presented by genetic counselors on a wide range of topics, such as Cardiovascular Disease, Direct-to-Consumer Genetic Testing, and Mental Illness and Genetics. Registration is Free for all guests. 


GenomeConnect is a patient portal, or registry, that is working to build the knowledge base about genetics and health that will allow researchers and doctors to study the impact of genetic variation on health conditions, which is key to the development of new treatments and therapies. A recently added new feature allows participants to connect with one another to find others with a similar diagnosis, age, gender or geography. 

NDIS readiness for advocates
The NDIS is rolling out across Victoria giving thousands the opportunity to start new plans for the first time while investigating local support options. Catherine McAlpine, Manager Disability Loop at AFDO introduced a new ‘Tip Sheet’ for the planning process and provided some perspectives on the Local Area Coordinators and the Service Coordination roles at the NDIS.
 

Community



11th - 13th April 2017

NDIS Understanding workshop - Warrnambool

The 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. Click here for session details and registration.
Provider/Organiser: Australian Federation of Disability Organisations (AFDO) Disability Loop 
Cost: Free for people with disability

21st April 2017
NDIS: An advocate's guide - Melbourne

The aim of this forum is to explore current issues relating to advocacy and participation in the NDIS in particular, issues of access and participation aimed at ensuring that all persons eligible for the NDIS receive all their entitlements . Expert speakers across a diverse range of organisations will provide individual perspectives about the implementation of the NDIS to date and the challenges it faces in the future. The conference is aimed at advocates, both legal and non-legal, case workers, lawyers and anybody involved in providing effective advocacy and support within this arena.
Provider/Organiser: VicDAN
More information here.

27th April 2017
WEHI Day of Immunology discovery tour

Walter and Eliza Hall Institute (WEHI) of Medical Research discovery tours provide a unique opportunity for the community to get in contact with medical research. 
  • See state of the art facilities
  • Learn about some exciting discoveries
  • Meet scientists
  • Hear how research is shaping future treatments
Tours are free and run for approximately 60 minutes.
Visits from schools, community groups, universities and individuals are welcome. Find out more here.

18th May 2017
You Decide Who Decides - Understanding powers of attorney laws

A free presentation by the Office of the Public Advocate on Thursday 18 May 2017 at the Office of the Public Advocate, Level 1 Training room  204 Lygon Street Carlton (10.0 am - 12.00pm). Here is the flyer with all the details and  link for registration which is essential.
 

Research

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

Discriminatory acts and young adults in public places
This research explores how young people with disability experience discrimination in public places. For the research, we would like to interview young people between the ages of 19 and 29 with different types of disabilities to better understand their lives, any discrimination they might experience and the effects of discrimination on their lives.
Interview participants will receive a $30 Coles Myer voucher in appreciation of their time and participant travel expenses to attend the interview will be reimbursed (or Cathy, the lead researcher, will travel to meet participants at their preferred location).
If you’re interested in participating in this study or have any queries, please contact:
Cathy Vaughan
T:  (03) 90356670
E:  c.vaughan@unimelb.edu.au 
Liz Gill-Atkinson
T: (03) 83443091
E: liz.gill-atkinson@unimelb.edu.au
This study has ethics approval from the University of Melbourne Human Research Ethics Committee (Ethics ID: 1545297.1). Information brochure.

Speak Up and be Safe from Abuse Research
You are invited to participate in a research project. You need to be an  adult with disabilities who have communication difficulties and:
  • are under the age of 65 years
  • are survivors of abuse/have experienced abuse
  • live in Victoria
  • receive funding for services from the Department of Health and Human Services (DHHS)
Support people, in an unpaid role (e.g. family and friends) who have supported people with communication difficulties as above are also welcome to be involved.
We will ask you to come to an interview. People with communication difficulties will also be asked to participate in focus groups to talk about the supports available to report abuse. A $50 gift card will be provided to reimburse you for any costs.
Please register your interest by 31 March 2017.
Contact Scope’s Communication and Inclusion Resource Centre:
T: (03) 9843 2000
E: circ@scopevic.org.au

Victorian Carer Statement Survey
Carers Victoria want to hear from carers and organisations that support someone with a disability, mental illness, chronic illness or an older person with care needs.
  • What works best in existing services and supports?
  • What could be improved and how?
  • What service gaps are there?
Please click here to find out more. Please note, when completing the online survey respondents have the option to complete information about two people they provide care for. Instructions are provided in the relevant section. If you are not able to complete the online survey but would still like to contribute, Carers Victoria welcome your comments by email: carersurvey@carersvictoria.org.au


The GSNV is currently part of an advisory group for a study that we’d like your help with – for you and your family to complete but also to spread the word about it to anyone in Australia.

The study is looking at what people think about personal genomic testing – the types of DNA tests that are advertised and can be bought online for things such as ancestry, relationships, health and disease predisposition, nutrition and wellness, response to medications, sporting abilities and physical traits.
The research is funded through the Australian Research Council and involves a multidisciplinary team of researchers from a number of organisations and the study is called Genioz, Genomics: National Insight of Australians.

The survey takes about 20 minutes. We hope to get thousands of responses from members of the public, even if they don’t think they know much about genetics. We would love to hear from people who have had a genomic test or have not thought about having a test. The survey is a great way to explore your views on this topic.

The findings from the study will help us shape policy and information around personal genomic testing for members of the general public and health professionals.

What can you do to help?
(1) Please complete the online survey at www.genioz.net.au
(2) Share the study link with your friends, family and anyone else – use Twitter, Facebook, Linked in – anything!! Re-tweet our tweets, get the word out.
(3) Anyone who completes the survey can go into a competition to win a $300 gift voucher – so not only are you helping with research you could also be a lucky winner!
 

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)
  • 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


Mental Health Program: Carers, Families and the NDIS 


Are you caring for a person with a psychosocial disability?  Do you want to know more about the National Disability Insurance Scheme (NDIS)? 

This series of four workshops will focus on the rollout of the NDIS and explore the practical aspects of the scheme for potential participants, their families and carers.  The key aims of the program are to increase NDIS readiness for carers with regard to plan preparation, and to understand the role of mental health carers and their rights in the NDIS.

When:
Part 1  10.00am – 1:00pm, Thursday 5 April, quote #4256
Part 2  10.00am – 1:00pm, Thursday 12 April, quote #4256
Part 3  10.00am – 1:00pm, Thursday 19 April, quote #4256
Part 4  10.00am – 1:00pm, Thursday 26 April, quote #4256

Where: Training room, Carers Victoria, Footscray

For more information and to book please call 1800 242 636 or email.

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!

The Bloody Long Trek - China 2017 


The Bloody Long Trek offers the adventure of a lifetime. You’ll walk the Great Wall of China, explore Tiananmen Square and the Forbidden City, and immerse yourself in a diverse culture, while raising funds for AMDF.
 
For more information, or to register your interest, please click here. The friendly staff at Inspired Adventures, our partners in this trip, are on hand to answer your questions. 
On Sunday 4th June 2017, thousands of people will come together in Melbourne to walk and run in support of Australians living with multiple sclerosis.

The MS Walk and Fun Run is organised by Multiple Sclerosis Limited (MS).

Since the first event in 1989, MS Walk and Fun Run participants have raised millions of dollars to fund essential services and support for people living with multiple sclerosis.

Find out more here.
Hosting a morning tea is fun, rewarding and a great way for you to help people whose lives have been affected by cancer.

The official date is Thursday 25th of May 2017, but you can host a morning tea any time during May or June.

Register to be a host at www.biggestmorningtea.com.au

Lunchtime Conversation Webinar 


Join VALiD for an opportunity to gather together, listen, reflect and share in focused conversations to deepen our understanding of how Person Centred Work can be most effective.

The one hour is designed to stimulate the appetite for further conversations and reflection.

Sessions:
  • Citizenship and Disability - 29th March
  • Being Present or Having Presence - 5th April
  • To Work or Not to Work - 26th April
  • Planning for a Good Life - 3rd May 
Session Times: 12:30pm – 1:30pm 
Session cost is $25
More info here.

SUPER BOSS DAY – FRIDAY 26 MAY 2017


Will you be a hero for HeartKids this May? REGISTER NOW for Super Boss Day. 

Super Boss Day is a fun new initiative where bosses and co-workers dress as a superhero for a day to raise funds for HeartKids to support kids with heart disease.

Bosses can register themselves or be nominated by staff, friends or family. By raising funds, you get to dress up as your favourite superhero on Super Boss Day!

This is also a great way for schools to get involved and support one of Australia’s most important children’s health issues -what student wouldn’t want to see their teacher dressed as a superhero for the day?!

It’s a lot of fun, a great way to get involved and raise funds for heart kids!

Find out more here.

Spina Bifida Foundation Victoria Financial Planning session


Have you ever thought about protecting yourself and/or your family against financial loss if you were to become seriously ill or injured or in the worst case, if you were to pass away?

SBFV is hosting an Information Session held by Monique Message, Director of Black Onyx Financials.

Monique is passionate about assisting people/families to ensure that they are financially prepared for the future in the case of misfortune and has a lot of information to offer and food for thought.

Monique will cover the topics:
  • Super
  • Estate Planning
  • Wills
  • Personal Insurance
  • Provide Case Studies
Date: Saturday 8th April 2017
Time: 2.00pm
Venue: Level 4, Ross House, 247 Flinders Lane, Melbourne
RSVP: Michele Cutajar: programs@sbfv.org.au

2017 Victorian Disability Awards


National Disability Services and the Department of Health and Human Services

The Victorian Disability Awards were established in 2011 and are now in their seventh consecutive year. The awards recognise and honour people who make an outstanding contribution to empower and include the lives of people with disabilities living in Victoria.

The awards are Victoria’s premier disability awards. They promote and support people with a disability from diverse backgrounds and identities. 

Nominations are encouraged from:
  • the Victorian community
  • people with a disability, their families and carers
  • community service organisations and volunteer groups
  • disability service providers
  • disability peak bodies and committees
  • businesses
Nominees selected as finalists by the judging panel will be invited to the 2017 Victorian Disability Awards ceremony on Wednesday 16 August where the winners will be announced.
Nominations are now open and close on 27 April 2017.

Public Lecture: Sex, sexuality and the rights of people with disability


Disability activists, people with lived experience of disability, and academics will come together to discuss their perspectives on the rights of people with disability in relation to sex, sexuality and relationships, with an emphasis on challenges and priorities for research and advocacy.

Tuesday 4 April 6 - 7:30pm

The University of Melbourne
Room 227, Level 2
Kwong Lee Dow
234 Queensberry St
Carlton VIC 3053

Speakers
  • Jax Jacki Brown (Disability & LGBTI Activist)
  • Prof Michael Perlin (New York Law School)
  • Linda Stokoe (Deakin University)
  • Dr George Taleporos (Summer Foundation)
The evening will be chaired by Dr Anna Arstein-Kerslake. Anna is a lecturer in Melbourne Law School at the University of Melbourne and the Academic Convenor of the Disability Research Initiative. Anna's research focuses on the human rights of persons with disabilities. Her published work focuses specifically on the rights to equal recognition before the law and legal capacity, including capacity to consent to sex.

Presented by the University of Melbourne Disability Research Initiative and RMIT University.

Register and find out more here.

Public Lecture: Human Functional Genomics


Interrogating the function of genes in development, health and disease has mainly been carried out in mouse models. With the advent of cell reprogramming, a process that turns a somatic cell into a pluripotent stem cell that is immortal and able to differentiate into every cell type of the human body, and the rise of CRISPR-assisted genome editing, a technology that permits gene knock-out as well as introduction or correction of mutations associated with human disease, human functional genomics is now possible.

In this presentation Professor Ernst Wolvetang will give examples how he used these approaches to investigate a range of neurological diseases and now also the ageing process. He will demonstrate how in vitro organoid based culture platforms can permit insight into more complex disease phenotypes and show how single cell transcriptomics help to reveal the diversity and complexity of early human brain development. Finally he will also discuss the possibilities and challenges associated with the use of genome edited human iPSC in drug screening and personalised precision medicine.

Find out more here.

Marcus: Community Movie Premiere


"The day after their elder brother Marcus comes out as transgender, Bonnie and Benny, a pair of curious twins set out – to the great dismay of everyone around them – to learn more, armed with only a camera, stubborn dedication, and a touch of ignorance."

This is an Auslan interpreted and wheelchair accessible event.

Cardinia Shire Council Youth Services invites you to join in for the premiere of the film Marcus, written, directed, shot and edited by young people from the Shire who identify as same sex attracted and sex and gender diverse.

Wed. 26 April 2017
5:30 pm – 7:30 pm


Cardinia Cultural Centre
40 Lakeside Boulevard
Pakenham, VIC 3810

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