- From the team
- Support group news
- In the media
- Conferences and seminars
- Seeking contact
- GSNV Calendar
From the team
Dear GSNV community,
Welcome to the latest edition of the GSNV E-News Bits and Pieces.
Every so often the GSNV is keen to provide information about grants and funding sources for support groups to help them do their important work.
Here are a few to consider:
The GSNV also recommends that you become a member of the GSNV
(if not already), so that your group can access the GSNV Small Grants program
. Please see page 8 of the latest issue of the GSNV newsletter
to see the support groups that were awarded funding in the last round (2015). The next round of GSNV Small Grants will be opened up later this year. Stay tuned for more information in the months to come.
Another good tip is to subscribe to the EasyGrants
and the Our Community
Louisa Di Pietro
Support group news
1st August - 30th September 2016
Metabolic Dietary Disorders Association Wellness Program “Being your best YOU”
We invite you to join our Pilot Program commencing – 1 August 2016. In line with the MDDA’s goal of achieving positive health outcomes for individuals living with an IEM (inborn error of metabolism) we are excited to launch our Pilot Wellness Program tailored to adults living with an IEM.
Facilitated by Susi Hendricks, (Psychologist & mother of teen with PKU), the 8 week e-coaching program is designed to help you achieve your plan for wellness. The aim is to educate, encourage and guide your ability to improve your vibrancy and energy. Based on the scientific principles of Positive Psychology, and using the technology of Fitbit, we’ll explore:
- creating healthy habits
- harnessing positive emotions
- identifying strengths
- boosting fitness and energy levels
- practicing mindfulness
- connecting with others
More info here
6th August 2016
Geelong NF Support Group Meeting
Location: Vaurn Ponds Bistro, Waurn Ponds Hotel, 1154 Princes Highway Waurn Ponds
RSVP: Karla Williams 0478 198 042
12th August 2016
Women with ALD forum - Melbourne
Leukodystrophy Australia are delighted to invite all women who have an Adrenoleukodystrophy (ALD) gene change, with or without symptoms, to their very first forum just for you! The special guest speaker is Ellie Prawer, who will be presenting the findings of her recent research project focusing on the experiences and concerns of women who have been told they are ‘carriers’ of ALD. More info here
13th August 2016
A Night for CF - Brighton
After a long hiatus, CFV is bringing back the ball! A Night for CF is our night to bring together and pay our respect to the Victorian CF community. A night to honour those who live with CF each day, to honour those who care for their loved ones and to remember those we have lost... Book your spot and come join us
. It is going to be a fantastic night!
13th August 2016
Leukodystrophy Australia AGM & Family Gathering Dinner - Hawthorn East
The AGM will comprise formal business and an address by guest speakers commencing at 4:30pm. AGM guest speakers will be around the NDIS from both the participant experience and a presentation from within NDIS. This will be followed by a Family Gathering Dinner, 7 - 9pm. Both at at Mary MacKillop Aged Care, 4 King Street, Hawthorn East, Vic. More info here
. Please RSVP Bronwyn by advising numbers attending and any special dietary requirements: firstname.lastname@example.org
or 1800 141 400 or Pam on 0417 358 061.
14th August 2016
Fontan Carer's Group
Have you ever wanted to meet other parents/carers who have been through a similar journey to yourself? Come along and enjoy the company of others who are a part of the Fontan community, share your experiences and catch up with other carers in a supportive environment, whilst enjoying some delicious food and a cuppa! The Australian and New Zealand Fontan Advisory Committee warmly invites you to our first Fontan Carers group gathering at the Royal Children’s Hospital Melbourne. This free special event will involve parents/carers of children/adults with a Fontan circulation (please note this event is for adults only).
RCH Ella Latham conference room (near the Sandrock Café)
Friday, 5th August to email@example.com
Please send an email with the number of people attending and details of any food allergies.
* Light food, tea and coffee will be provided on the night.
21st August 2016
Noonan Syndrome Seminar - Sydney
Time: 9:30am to 3pm
Venue: Garvan Institute of Medical Research, The Auditorium, Level 1, 384 Victoria Street Darlinghurst NSW 2010, (Entrance via Burton Street).
The seminar aims to bring together families, health professionals and services providers. In the past we have had a variety of guest speakers such as clinical geneticists, genetic counsellors, service providers and personal stories. It is an excellent opportunity to network and get in touch with other families facing the same issues.
If you are interested in attending and if there is anything you would like to hear about in particular, please contact Porjects Manager Doriane Ranaivoharison on 02 9295 8314 or email firstname.lastname@example.org
22nd August 2016
Very Special Kids - The Firehouse Coffee Morning - Melbourne
Coffee Mornings are an opportunity for parents to spend time discussing the complexities of caring for a child with a life-threatening condition or share grief after the death of their child. See here for more info
25th & 26th August 2016
DSV Comes to You Warrnambool
Thursday 25th August - 6pm onwards
Night at a local pub (TBC) in Warrnambool
Drinks and meals at own expense (bistro prices)
Come along and meet: Ian Cook (Education consultant), Sue Blandford (Family Support)
Kerry Hands (Adult Support), Sue O'Riley (Executive Officer) and Elizabeth McGarry (NDIS Coordinator). Let DSV know what’s important to you and learn how we can support you through all stages of your son or daughter’s life.
Friday 26th August- 9.30am – 3pm
Workshops for families including sessions for:
Pre-school years, Transition to school, Navigating the teen years, Adult planning
NDIS - What's it all about? (Session 1)
For more information and to RSVP, email to: email@example.com
or ph: 1300 658 873 or see the Facebook page
26th - 28th August 2016
CMT Aussie Kids Weekend (NSW) - save the date
It’s on again. Are you a young school kid with Charcot Marie Tooth Disease and feel like a fun, challenging time away from home? Experience heaps of fun activities like archery, giant swing, cable glide, canoeing, rock climbing and more. Join us at the NSW Sport & Rec Centre at Berry on the NSW South Coast from FRIDAY, 26 AUGUST – SUNDAY, 28 AUGUST 2016. This year is particularly exciting as we welcome 9 members of the CMT Kids from the United Kingdom. To be eligible to attend you only have to be a student at school aged from about 10 years; be a member of the CMTAA (if you’re not already a member, contact CMTAA) and have some form of CMT, oh... and want to have fun with other kids just like you. Email Jillian at firstname.lastname@example.org
or call mobile 0428 221 264 for more details.
27th August 2016
NF1 Paediatric Seminar - save the date
Hear from speakers involved in many aspects of management of NF1 in children and learn more about the NF Clinic at RCH. A great opportunity to meet other families who are on the NF journey like you. Registrations will open later this month. See here
for more info.
28th September - 2nd October 2016
23rd October 2016
MDDA Family Retreat and Teens Camp (NSW) - save the date
The next MDDA
Family retreat and Teens camp will be held in Narrabeen, Sydney as follows:
Wednesday 28th September – Sunday 2nd October, 2016 (Open to all PKU/IEM teens from ages 10-17 yrs). Siblings welcome to join from Friday 30th September – Sunday 2nd October.
Friday 30th September – Sunday 2nd October, 2016 (Open to all IEM parents, adults, kids and siblings)
Further details here
will follow shortly, but in the meantime save the date and start planning your trip.
9th October 2016
Angelman Syndrome Association Australia Family Fun Day - Melbourne
Venue: Port Phillip Specialist School, Port Melbourne, cnr Pool and Nott Streets. Read more here
Congenital Adrenal Hyperplasia Support Group Australia Family Conference Day - save the date
Larwill Studio 48 Flemington Road Parkville (Close the Royal Children’s Hospital Melbourne)
Exact times and program TBC. See the CAHSGA website
for more info.
In the media
Melbourne researchers describe how stress can speed up the spread of cancer in the body
A Monash University research team led by cancer biologist Dr Erica Sloan has found in mouse studies, that stress can drive the spread of cancer. Dr. Sloan's team found that stress acts like a 'fertiliser' that helps the original tumour cells escape from the original site and spread throughout the body. A human pilot trial is now being conducted at the Peter MacCallum Cancer Centre in Melbourne, to examine whether common drugs that can turn down this stress response have an effect on the recovery of women recently diagnosed with breast cancer. Read more here
and view the Catalyst story here
The NDIS roll-out has arrived
The $22 billion NDIS, which is being introduced in stages around the country over the next three years, started to be rolled out across Australia on the 1st of July. This new system moves away from the old one-size-fits-all approach to a new approach which is based on choice and control for people with disability. Read more here
The scheme is designed to offer disability support packages – that is, money for disability support – to every Australian citizen under 65 with “significant and ongoing support needs”. However, articles published in The Conversation
highlight how many people eligible for the NDIS are likely to miss out on its benefits. These people fall into particular groups, such as those who may not think of themselves as having a disability, or people who may not know what the NDIS is or how to access it
. There is also a risk that people whose support needs fluctuate, such as due to periodic severe mental illness, may think they do not qualify because they do not always need support.
People in Indigenous communities are also at risk of missing out. Surveys have reported that up to 45% of Indigenous Australians have experienced a disability, but so far only 5% of them have participated in the trials. Barriers to participation include problems in access. These include geographical as well as lack of engagement due to stigma associated with disability in Indigenous communities. Read more here
In the case of infants and young children diagnosed with a disability, the scheme will provide funding for early intervention, therapy and respite services, as required and chosen by their parents. This article
in The Conversation
highlights the challenges new parents may face in determining whether they are eligible for early intervention support, due to the technical nature of the NDIS documentation. Moreover, services such as home visits are costed in advance into a funding package, meaning that parents must choose before they know or understand what early intervention is.
Read more about the NDIS in Victoria here
$55 million awarded to build million-person precision medicine study in the U.S.
In his 2015 State of the Union address, President Obama announced that he's launching the Precision Medicine Initiative. Precision Medicine takes into account individual differences in people’s genes, environments, and lifestyles, so that specific treatments can be targeted to individuals. The National Institutes of Health
obtained funding from congress last month to build the partnerships and infrastructure needed for the project. They hope to engage engage 1 million or more U.S. participants who will be asked to contribute information about their lifestyle, health history and status, share their genomic and other biological information through simple blood and urine tests, and grant access to their clinical data from electronic health records. Read more here
6th - 7th August 2016
National Intersex Support Conference - Melbourne
Attendance of the conference is FREE to members, and includes not only a great program of speakers, sharing and workshops, but also some fun social activities. The Saturday (6th) afternoon information session will be open to selected allied health care professionals and organisations who can actively contribute information or resources that will benefit our conference participants. As participation is only open to AISSGA members, there is a membership form on page 2 of this invitation
6th - 9th August 2016
Human Genetics Society of Australasia (HGSA) Annual Scientific Meeting - Hobart
The theme for the conference is “Integrating Genomics into Healthcare”. We plan to explore the ways in which genetics and genomics are changing healthcare including the translation of genomics into diagnostics and targeted therapies as well as the psychosocial impact of genomic medicine on patients, families and communities. More details here
6th - 7th August 2016
2nd Biennial Haemochromatosis Conference - Brisbane
The conference is a great opportunity to learn more about haemochromatosis, latest research and lots more. Plus its an opportunity to join and share with others in the same situation and ask those questions you've always wanted answered. Read more here
10th - 11th August 2016
Disability Employment Conference - Melbourne
Australia’s Disability Employment Conference is Australasia’s premier conference for managers, aspiring managers, practitioners, and academics working in or with the Disability Employment Services sector. As part of its ongoing commitment to industry development and growth, Disability Employment Australia provides delegates with opportunities to think, question and respond to a range of critical issues in ways that are meaningful to their organisations, people with disability, employers and the industry more broadly. Read more here
15th - 19th August 2016
IASSIDD World Congress - Melbourne
The 15th World Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities. Melbourne Conference and Exhibition Centre. More info here
21st August 2016
VCFS 22q11 Foundation Conference - Sydney
The Childrens Hospital Westmead, Corner Hawkesbury Road and Hainsworth Street, Westmead, NSW 2145.
- Dr Linda Campbell - Uni of Newcastle
- The Find Lab - Research
- Professor Catherine Birman - ENT
- Learning Support & IEP's
- NDIS - National Disability Insurance Scheme
- Speech - Speaker to be confirmed
- VCFS 22q11 Committee
or register here
21st August 2016
Exclusion and Embrace: Disability, Justice and Spirituality Conference - Melbourne
This multi-faith Australasian Conference reflects a growing interest in issues of faith and meaning in the lived experience of disability. Among the themes explored will be ethics, care, inclusion in faith communities, friendship, discrimination, love, justice, liberation. More info here
25th - 26th August 2016
National Huntington's Disease Conference - Melbourne
The purpose of the event is to offer an opportunity for the community and professionals to come together to discuss research, medical care and practical strategies that can assist you in your everyday life.
NAB, 700 Bourke Street, Docklands
Day 1 Focus: Making choices as a young person; Living well with HD
Day 2 Focus: Current Policy Environment; Innovative Research
In order to make this event as accessible as possible, Huntington’s Victoria is hosting this event free of charge. More info here
1st - 2nd September 2016
Strengthening Disability Advocacy Conference - Melbourne
The theme of this year's conference is Putting rights center stage. This conference is for anyone who is interested in strengthening and upholding the rights of people with disability. More info here
7th - 9th September 2016
National Paediatric Bioethics Conference - Melbourne
The National Paediatric Bioethics Conference brings together paediatric and adolescent health practitioners of all disciplines, ethicists, policy makers and community sector practitioners. Attend the conference to hear robust dialogue and different perspectives on ethical issues facing the paediatric healthcare sector. More info here
11th - 12th September 2016
National MND Conference - Melbourne
MND Australia is pleased to announce the 8th National Motor Neurone Disease (MND) Conference.
Theme: Care, Collaboration, Communication. More details here
18th -19th September 2016
International Conference on Medicine, Public Health and Biological Sciences - Tehran-Iran
The aim objective of 2016 International Conference on Medicine, Public Health and Biological Sciences is to provide a platform for researchers, academic staffs, academicians as well as industrial professionals from all over the world to present their research results and development activities in Medicine, Public Health and Biological Sciences. Read more here
22nd - 24th September 2016
COGEN Congress - Spain
The 2nd World Congress on Controversies in Preconception, Preimplantation and Prenatal Genetic Diagnosis (COGEN), will be held in Barcelona, Spain.
The Congress includes:
- The use of Next Generation Sequencing for expanded preconception carrier screening
- Technology options for clinics with a review of strategies for evaluation of chromosome copy number in human embryos and oocytes
- Advances in Preimplantation Genetic Diagnosis (PGD) and the latest data on Preimplantation Genetic Screening (PGS)
- Non-invasive Prenatal Testing (NIPT) and Non-invasive Prenatal Diagnosis (NIPD)
- From Chromosomal Microarrays (CMA) to Whole Exome Sequencing (WES) in the evaluation of the malformed fetus
- Controversies in this burgeoning area of clinical practice.
For more information click here
23rd - 24th September 2016
First Asia-Pacific Bone Disorder Symposium - Melbourne
This meeting will showcase the latest research in inherited bone disorders including new therapies, new management and new stem cell approaches to understanding these conditions. It is designed to attract a diverse group of researchers, clinicians, surgeons, and allied health workers. For more information please click here
30th September - 2nd October 2016
12th Biennial Australasian CHARGE Syndrome Conference - Gold Coast
For individuals with CHARGE, families, extended family members, medical professionals. More details here
7th - 8th October 2016
11th National Angelman Syndrome Association Australia Conference - Melbourne
Theme: "Finding Our Voice" The program is aimed at professionals including medical practitioners, therapists, educators, students in these fields and disability support workers, and is of interest to Angelman syndrome families. Presentations include topics such as current research in Australia, the Angelman Registry, literacy, Alternative and Augmentative Communication (AAC), supporting students with complex communication needs and Video Self Modelling. Read more here
16th - 17th November 2016
10th National Deafblind Conference - Fremantle
The theme of the conference is "Celebrating Experiences Across the Lifespan" and it is hoped that the conference will provide delegates with an opportunity to connect with people who are deafblind, family members, educators, allied health professional, medical and nursing staff, and researchers. The program will cater for a range of interests, from early childhood and congenital deafblindness to elderly people with acquired combined vision and hearing loss. Advocacy, research and best practice will also feature in the program. For more information, click here
26th - 28th November 2016
AussieMit 2016 - Sydney
is the fifth biennial meeting of researchers in Australia that brings together scientists and clinicians studying biochemistry, molecular biology, plant sciences, and cell and developmental biology with mitochondria as the focal point. The diverse backgrounds of the delegates contribute to lively and stimulating meetings. The aim of this meeting is to update researchers of new data, to outline relevant techniques, and to foster new collaborative and career opportunities.
The Kolling Institute, St Leonards
Keep up to date with AussieMit 2016 by liking the AussieMit Facebook page
6th - 7th May 2017
Connections 2017 - Melbourne
Save the date for the Disorders of the Corpus conference organised by AusDoCC.
International Dyskeratosis Congenita and Telomere Biology Disorder patient registry
By participating in the registry, you are helping to solve the puzzle for Dyskeratosis Congenita and Telomere Biology Disorders. See more here
Fact sheets for patients and clinicians about short telomere syndromes.
Talking about Down syndrome resources
A range of resources to help with how to start the conversation about Down syndrome, how much to say and how to deal with people's insensitive comments. See here
FDA draft guidelines for next generation sequencing based tests
Next generation sequencing (NGS), can scan a person’s genetic information to detect genomic variations/genetic changes that may determine whether a person has or is at risk of disease or may help to inform treatment decisions. The first draft
provides recommendations for designing, developing and validating NGS-based tests for rare hereditary diseases. The second draft
describes a recommended approach that uses clinical evidence from FDA recognised public genome databases to support clinical claims for their tests, and provide assurance of accurate clinical interpretation of genomic test results.
The Inclusion Hub
is a new online tool to support Australian families, communities and practitioners with the resources they need to take control of their journey with the NDIS. Created in collaboration with the NDIS Sector Development Fund, ECIA experts used the National Guidelines for Best Practice in ECI as a framework.
3rd August, 28th September, 26th October 2016
NDIS information sessions for carers, people with intellectual disability and children
The roll out of the National Disability Insurance Scheme (NDIS) is one of the biggest reforms in the disability sector. To assist in preparedness for the NDIS roll out in Maribyrnong in July 2018, Council is running NDIS Information sessions for:
Carer Information Session – Presented by Carers Vic
People with Intellectual Disability Information Session – Presented by VALID
Children Information Session – Presented by the Association for Children with a Disability
Maribyrnong City Council
Wed 3rd Aug, 2016: Carers - 1-3pm, Footscray
Wed 28th Sep, 2016: Intellectual disability - 10:30am-12:30pm, Footscray
Wed 26th Oct, 2016: Children - 10:30am-12:30pm, Footscray
Cost: free but booking is essential
Contact: Liz Wright
Phone: 9688 0313
4th August 2016
Circus Quirkus - Geelong
is a non-animal, family oriented show. It includes the amazing “Zim Boys” and Australia’s best-loved clown – Christof; a troupe of local and international performers who take the audience through traditional circus acts.
to attend this event will be available for families who have a heart child or heart angel (via HeartKids).
12.30pm & 5.30pm
The Arena, 110 Victoria Street, North Geelong, 3215, VIC
Please register your interest to receive a free ticket here
Please contact Lynette on 0418 548 879 or email@example.com
for further information.
for other shows in Victoria.
16th August 2016
CIA Peer Supporters Network Meeting - Melbourne
Chronic Illness Alliance (CIA) have the pleasure of hosting Kim Henshaw from Diabetes Victoria. Kim has lived with Type 1 Diabetes for 30 years. She founded and operates the Oz Diabetes Online Community. She will present information on the major social media platforms used by consumers and health professionals, as well as share insights into the advantages and disadvantages of each. CIA will also workshop scenarios when using social media for peer support and debunk the common myths of online interactions.
CIA will also have representatives from Maurice Blackburn’s Will Disputes, Public Liability and Superannuation Teams will be providing a snapshot of relevant aspects in their area of expertise for people living with a chronic illness. With only 10 minutes to explore each area, make sure you come with your questions ready or take the opportunity to follow up with the presenters at a later date.
Click more information and to RSVP
22nd August 2016
Building a bridge to community
In this seminar, Janet Klees, who has extensive knowledge and experience in building bridges to community life, will discuss the importance of community life especially for people who are marginalised, what influences and practices isolate people and how to build bridges and pathways into community life. People with a disability, their families, support workers, planners, professionals, managers, CEOs, policy and other people in leadership positions would benefit from this seminar.
Ticket price includes morning/afternoon tea & lunch.
Mon 22nd Aug, 2016: 9:30am- 4:30pm, Doncaster
Concession card holders/family member $65 | Standard/Professional $200
Dementia Awareness Month survey
This survey asks questions about your social network and how you feel about your relationships with others. It can be taken by people with dementia, carers of people with dementia or any member of the general public. The aim of this survey is to compare how feelings about relationships vary across the population. Find out more here
Study on pain medications
Help build an understanding of pain medications from a consumer point of view. MOVE muscle bone & joint health
is doing a research project for the Victorian Government examining consumer attitudes to pain medications. The study is looking at the information needs of people prescribed pain medications, and how patients get information about their medications. To help with our study, we are looking for people 18 years of age or older, living in Victoria and have been prescribed with opioid medications for three months or more. To find out more go to http://buff.ly/1QayUDq
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
- Constitutional Mismatch Repair Deficiency (CMMRD)
- Disorders of the corpus callosum
- Ehlers-Danlos syndrome coexisting with Lynch syndrome
- 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
- Moebius Syndrome
- Pantothenate Kinase-associated Neurodegeneration
- 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 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.