- From the team
- Support group news
- In the media
- Conferences and seminars
- Seeking contact
- GSNV Calendar
From the team
Happy New Year and welcome to the first edition of Bits and Pieces for 2015. We are hoping you enjoyed the holidays and survived the inclement weather that has once again perplexed January holiday goers.
With Rare Disease Day (RDD) just over a month away we are busily putting together a week long programme that we hope will be informative, reflective and fully engaging of the GSNV community. Rare Disease Day will be the finale of our Genetic Support Awareness Week, and we are hoping you can assist. Please RSVP firstname.lastname@example.org
The Genetic Support Network of Victoria (GSNV) will be facilitating our annual Genetic Support Awareness Week (GSAW) from February 23-27 2015. Genetic Support Awareness Week strives to raise awareness about living with a genetic condition and to support people affected by genetic conditions. Activities are held throughout the week to increase the community and health professional’s understanding and awareness of life with a genetic condition as well as the services needed and available. This year, there will be a particular focus on rare diseases and the undiagnosed which collectively make up a large but underrepresented proportion of the genetics community.
GSNV invites its community to get involved and raise awareness for genetic support
As an activity in GSAW 2015, we are seeking to visually display the human face of genetic conditions. Your visual interpretations of life with a genetic condition will assist the GSNV in developing a tapestry of the genetics community. Support is an important component in understanding and managing genetic conditions. However, public awareness and the value of support services are lacking and the people affected and those providing support are often faceless.
Facing Forward in GSAW
The aims of the “Facing Forward” campaign are to give the public a visual insight into the ‘people’ affected by genetic conditions and to raise awareness of the importance of support services in genetic health. Over Genetic Support Awareness Week, the GSNV will be using social media as a wide reaching platform to showcase the people behind genetic labels.
The GSNV invites you to ‘Face Forward’ and submit a photo that represents your experience.
How to submit your photo:
Please submit your photo along with a caption of 25 words that reflects your journey. You can submit your entries via email to email@example.com
with the subject line “Facing Forward”. By submitting a photo you are consenting to the GSNV reproducing the photo and caption during GSAW on our website, Facebook, Twitter and electronic communications.
If you have any questions or would like more information, please contact Nandini Somanathan at firstname.lastname@example.org
or 8341 6315.
If you could please circulate this through your networks, that would be fantastic.
More information on GSAW and RDD will be posted on the GSNV website and circulated on social media in the coming weeks.
Win an Alfa Romeo Giulietta
Support research at the Murdoch Childrens Research Institute
Get involved and get moving in a brand new car! Raffle for Research is a terrific campaign aiming to raise dollars for research and support research groups and services like the GSNV to conduct their important work. The GSNV encourages all its community to get on board, promote, sell and buy tickets in support of the MCRI and help us to kick start 2015 with a toot.
Buy tickets: The easiest way to buy tickets is online. Simply head to www.raffleforresearch.com.au and buy as many tickets as you like! Your ticket receipts are emailed directly to you.
Support group news
6th - 8th February, 2015
Spina Bifida Foundation Family Camp
@ Phillip Island Adventure Resort
Cost: $50 per person (u/2 free) or $150 per family (includes all meals & activities)
RSVP: ASAP info [AT] sbfv.org.au
5th and 6th February 2015
7th February, 2015
2015 Melbourne NF Family Day
The Victorian CTF State Committee is planning an information session and family day for individuals and their families living with neurofibromatosis (NF).
The event will be an opportunity to meet and form friendships and support networks with nearby NF community members.
There will also be an insightful information session to be run by Professor Rosalie Ferner, Neurologist and Lead Clinician at the Neurofibromatosis Service in London.
For more info see the draft program
If you would like to register your attendance, or you have any questions please contact us: email@example.com
20th February, 2015
Spinal Muscular Atrophy Association of Australia Trivia night
6.30pm for a 7pm start. Beaconsfield Community House.
8 Oniell Rd Beaconsfield
Tables of 10
$15 per head ( and we will find you people to sit with)
$10 for a table of 10 booked
Call the office on 9545 3633 to reserve your place.
Bookings close on 13 February
27th February, 2015
GSNV - Rare Disease Day
Rare Disease Day is a world-wide observance held on the last day of February each year to raise awareness for rare disease and to improve access to treatment and medical representation for individuals with rare diseases and their families. In Australia, Rare Disease Day has taken on the momentum it deserves and people from all states and territories gather to celebrate and raise awareness.
The Genetic Support Network of Victoria, is hosting a week long awareness event- "Genetic Support Awareness Week (GSAW)". This event strives to raise awareness about living with a genetic condition and to support people affected by genetic conditions. Activities are held throughout the week to engage the community and health professionals and to reflect on the services needed and available.
The main event during GSAW will celebrate Rare Diseases Day on the 27th February 2015. The GSNV will host a presentation morning, which will include talks from both health professionals and community members about the impact of rare diseases. This will be followed by a morning tea and a chance to "put your hand up for Rare Disease" on our Hand Wall. This event is held in collaboration with the Murdoch Childrens Research Institute and will be hosted at the Royal Children's Hospital, Ella Latham Theatre. Please RSVP firstname.lastname@example.org
28th February, 2015
The Phelan-McDermid Syndrome Foundation High Tea
Campbelltown Catholic Club - Fitzroy Room
: $55 per person
14th Feb 2015 - email@example.com
or 041509113. More info
27th - 29th March, 2015
Save the date - 2015 HFV Family Camp
Haemophilia Foundation Vic
are holding a camp for families affected by bleeding disorders. Join in the fun activities, meet new people, catch up with old friends, and share stories. For more info: firstname.lastname@example.org
In the media
Changes to the PBS co-payment and safety net
Patient contributions to the Pharmaceutical Benefits Scheme have lead to an increase in the cost of subsidised pharmaceuticals by $0.80 for concession and $5 for general patients. The safety net threshold will also increase by 10%. For more details click here.
Twelve new genetic causes for rare developmental disorders discovered
The Deciphering Developmental Disorders (DDD) program which began in 2010 has so far comprehensively analyzed every gene in 1,133 children with rare developmental disorders. This database allows for assessing the similarity in symptoms and facial features between children all over the world, allowing the search for causative mutations for certain disorders becomes more focused. For more information click here
Patients face new $20 fee for seeing their GP
For years, Medicare has paid $37.05 towards visits that range from 6 to 10 minutes. New changes mean that Medicare will only pay $16.95 per visit. For more details click here
Health Minister Sussan Ley backs down on $20 rebate cut for short GP consults up to 10 mins. Read more
Social services funding cuts
A number of peak bodies have recently learned that they have been defunded as part of the $240 million budget cuts to social services. Read more here
Social security changes
Under the new changes coming into effect this year, recipients of the disability support pension who are under 35 years old will have their eligibility reassessed. This change has the potential to leave 1,500 people worse off. Read more here
6th February 2015
Our Choice Expo
Informing participants & families about services and issues related to NDIS. click here
for the flyer.
13th - 14th March 2015
15th March 2015
Living Well With Pain Consumer Symposium
Painaustralia invites you to attend Living Well With Pain – a consumer symposium to be held at the Brisbane Convention & Exhibition Centre.
Leading Australian experts on pain management will discuss new knowledge about pain, its links with depression and effective ways of communicating and managing pain with and without medication.
This will be of interest to all people living with pain, their families, carers and many others, including policy makers, healthcare professionals and students.
Participants will be invited to contribute to a consumer forum, to discuss ideas for improving pain services, locally and potentially, Australia-wide.
For more info click here
, or here
30th March 2015
Held at the Adelaide Convention Centre, this unique scientific meeting brings international and local experts together in an intimate setting for a day of energy, speculation and possibility. For further information and to register your interest click here
9th - 12th April 2015
MPS and Related Diseases Conference
Camp Manyung Mt Eliza Victoria. Enquiries: 1800 045 515. For more information click here
24th - 27th May 2015
13th National Rural Health Conference
The 13th National Rural Health Conference in Darwin will focus on the People Places Possibilities that are keys to good health for rural and remote Australia. For more info click here
15th - 18th July 2015 (Chicago, USA)
The Angelman Syndrome Foundation 2015 Biennial Conference
This Conference is a networking and learning event for families, individuals, researchers, medical experts, and resource professionals. Registration is free for individuals with AS and their families. To find out more, click here
Clinical Management Guidelines for Friedreich Ataxia
The Consensus Clinical Management Guidelines for Friedreich Ataxia
(FA) are designed for use by healthcare professionals and individuals with FA. The Guidelines cover nearly all symptoms and issues that can be relevant to Friedreich ataxia.
Epilepsy warning device
are currently in the middle of producing Embrace, which is a wristband/watch that will provide a warning for people who have seizures.
People who have Epilepsy wearing an Embrace will get an alert when an unusual event, like a convulsive seizure, happens. A message will go via their smartphone to parents, roommates or caregivers, so somebody can check on them. In addition, a caregiver can can wear a ‘companion’ Embrace, and if nearby, will also vibrate to warn them.
Currently fundraising through crowd fundraising site IndieGogo
, the Embrace should be available next year.
Port Phillip Foreshore Disability Access
The city of Port Phillip has compiled a list of its accessible pathways, shared between pedestrians and bike users extends the length of this foreshore. The list can be found here
Information for women with Epilepsy
A online resource for women to help answer their questions about epilepsy and their own health, pregnancy, and the well-being of their children. Click here
to visit the website.
Free Autism Apps
A range of speech and language apps are now available free from the app store
Starting School Resources
KidsMatter Early Childhood
have developed a range of resources
for families, Early Childhood Education and Care services and schools to help support children and their families as the school year starts.
February is Marfan Awareness Month
Marfan syndrome is a genetic disorder that affects the body’s connective tissue that is responsible for holding all the body’s cells, organs and tissue together.
14th February 2015
Cupid’s Undie Run
Join in to put the hilarity in charity with hundreds of half-naked runners taking to the streets in celebration of their fundraising for the Children’s Tumour Foundation
. Click here
for more info.
14th February 2015
Heart Kids Sweet Heart Day
Sweetheart Day will raise money to fund vital medical research as well as support, to improve the lives of Aussie kids with childhood heart disease. You can participate by hosting an event
or by sending a virtual gift to your Valentine via the website
19th February 2015
Super Boss Day
Super Boss Day is a new initiative where bosses dress as a superhero for a day to raise funds for children with heart disease and their families. Nominate a boss, support an organisation, or just donate to this great cause! Click here
to find out more.
12th - 15th March 2015
World's Greatest Shave
Be Brave & Shave this March for the Leukaemia Foundation. Every day, 31 Australians will be diagnosed with leukaemia, lymphoma or myeloma. The money you raise will continue the search for cures and fund free emotional and practical support, like accommodation for regional families who need to move closer to treatment. Click here
for more info.
17th April 2015
World Haemophilia Day
World Hemophilia Day provides an opportunity to talk to your family and friends, colleagues, and caregivers to raise awareness and increase support for those living with an inherited bleeding disorder. For more info and resources click here
6th May 2015
Youngcare Simpson Desert Challenge 2015
Trekkers will spend ten days walking 300km across the geographical centre of the Simpson Desert to experience what life might be like for a young person living in aged care - not a "life", but an existence comprised of isolation, uniformity, restrictions and little decision-making ability. Click here
to find out how you can help support the cause.
15th May 2015
International MPS Awareness Day
International MPS Day began as a way to honour everyone in the MPS Community, to recognize, remember and rejoice in each other. For more info click here
Scholarship for students in NSW
Are you a student who uses a wheelchair? The Gregory & Dolores Farrell Scholarships are open to those planning on attending university in 2015. Click here
for more information and eligibility requirements.
Down Syndrome Australia NDIS Survey
Down Syndrome Australia (DSV) would like to know your thoughts, questions, experiences and concerns about the National Disability Insurance Scheme (NDIS). This information will help DSV be the best voice we can for the Australian Down syndrome community. Take the survey here
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.
- Hajdu Cheney syndrome
- Megalencephaly Capillary Malformation (MCAP) syndrome
- Pantothenate Kinase-associated Neurodegeneration
- Succinic Semialdehyde Dehydrogenase Deficiency (SSADH)
- 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 email@example.com
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.