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Bits and Pieces August 2015

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,

Welcome to the latest edition of the GSNV E-News Bulletin – Bits and Pieces. Our bulletin is once again full of support group news, information and important dates and events. We collate the best of what we receive in our communications and pass that on to our members and networks.  It takes time and effort but it’s a crucial part of the service we offer. 
 
This month, thanks to the Comedy Lounge, we are pleased to offer free tickets to comedy shows in the lead up to the Melbourne Comedy Festival. GSNV financial members are eligible to be in the running.  Renew you membership now! This is a great opportunity to remind financial members to renew their membership with the GSNV and encourage others to take out a membership with us.

Please go to www.gsnv.org.au for information on how to renew your membership online or call our office on 8341 6315 for assistance.
 
Signing off from a sweltering 36 degrees in Italy.
 
Louisa Di Pietro
Group Leader 


Free Comedy show tickets for GSNV members!
The comics lounge have been kind enough to offer GSNV members free tickets to comedy shows and an opportunity for a good laugh. Tickets are offered to GSNV financial members only. If you are not a member of the GSNV please click here for more information and be in the running for free Comedy Lounge tickets. Please also note that this is a 18+ venue.

To see: Star Comedian & TV/RADIO Josh Earl
 
Melbourne International Comedy Festival favourites are back in town. You’ll get to enjoy over 2 Hours of great stand-up comedy. 
 
When: Today to Friday 7th August
Doors Open: 6.30pm (if you want to come & buy some dinner)
Show Starts: 8pm (runs for 2+ hours)
Cost: FREE (for the show, normally $30pp)
See show Line Ups and Dinning Menu: www.thecomicslounge.com.au
 
To Book: CLICK/BOOK HERE with your name, number of tickets & which show you would like. 
 

Support group news

Australian Leukodystrophy Support Group Raffle
Win a Lexus IS 250 Luxury (worth $61,161 includes on road costs) as well as other great prizes and support Australian Leukodystrophy Support Group. More info here.

Board Members needed for Dyskeratosis Congenita support group
We are seeking the support and commitment of people who wish to make a difference in the lives of families affected now, and diagnosed in the future with Dyskeratosis Congenita.

There are thousands of rare diseases with many worthy support groups and charities working hard for their cause.

Our cause, Dyskeratosis Congenita (DC) is so rare it gets overlooked as no one has never heard about it. DC effects 1 in in every one million people worldwide. We are currently aware of 10 cases in Australia, and there has been 3 in New Zealand.

DC is a multi-functional life threatening, genetic disorder primarily effecting bone marrow where failure is expectantly high.  Patients with DC have very short Telomeres meaning they are susceptible to develop many different cancers as their cells stop replenishing. Other issues to arise are pulmonary fibrosis (scaring of lungs), Liver cirrhosis, gastrointestinal complications, plus many more. Skin and nail abnormalities tend to present first. The database of cases is still so limited that making generalisations is difficult. Statistically there are many other cases out there undiagnosed.

Currently, children that present with Leukaemia are not automatically tested for DC. Hence there’s the potential for patients to be incorrectly treated and unfortunately not survive, plus siblings miss out on being tested themselves for the disease.

My family has set up a Facebook page to keep people up to date with our family’s DC journey. Our Rare Kids was created to assist our family with the many medical expenses that come with 3 young children visiting 11 different specialists regularly in Melbourne from regional Victoria and raise funds to attend a specialised DC conference camp in the USA to learn about the disease, which was tremendously beneficial.

We are wanting to get into operation (separate to Our Rare Kids) an outreach service for families, needing advice and support through the difficult newly diagnosed stage through to everyday issues that arise, another very important role of group is to educate and advocate for DC, whether it be set up an exhibit at a medical conference for the opportunity to network with the medical community and educate them on DC and further promote our group. None of this would be possible without funds, therefore fundraising and sponsorship is an ongoing priority to be successful.

We are very fortunate to have waiting in the wings our medical advisory board, consisting of a small group of much respected professors and doctors who will be on hand with the most accurate, up to date knowledge and advice. Some of who contributed to writing the very first Dyskeratosis Congenita Clinical guidelines. World renowned professors and specialists worked together to create this invaluable tool due to hit our shores in the next month.

Anyone who has an interest in rare diseases, or feels they can contribute on a committee to become a successful recourse for both the medical field and community please consider coming on board.  We are all located in both Australia and New Zealand and welcome anyone interested and motivated. Monthly meetings are held on Skype.

For further information contact Michelle - Email - ourrarekids@gmail.com

4th August 2015
Cystic Fibrosis Victoria Support Dinner

The Corner Store, 1 Swanston Street, Mentone Vic 3194 at 7.00pm.
To confirm your attendance and any dietary requirements please contact CFV by emailing support@cfv.org.au or phoning on 9686 1811. Dinner will be provided, drinks will be at bar prices.

8th August 2015
HeartKids Free tickets to Circus Quirkus

Free tickets to attend Circus Quirkus are available for families who have a heart child or heart angel. Show times are 10am, 1pm, 4pm. Location: Melbourne Convention and Exhibition Centre, 1 Convention Centre Place, South Wharf. Circus Quirkus 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. Please visit our Events Calendar for booking details.

11th August 2015
Haemochromatosis Information Session Melbourne 

Each year in August, Haemochromatosis Australia coordinates Haemochromatosis Awareness Week. The week is an opportunity to focus attention on haemochromatosis and the risk of inherited iron overload through the media, displays and other activities. This year the week will be observed from 10 – 16 August. In Melbourne, we will host a free public information session at Places Victoria Studio (Mezzanine Level), 710 Collins St, Docklands on Tuesday 11 August 2015 at 6pm. More info here.

12th August 2015
Dads Support Activity - Dads in the East Group

Time: 6:00 pm - 10:00 pm
Location: Together with Interchange Outer East and Parent Support Network we are offering Dads in the East activities to have fun and get together. Ten Pin Bowling and Irish Bar for Dinner
Where: Knox AMF Bowling
RSVP: Erin Weegburg @ IOE ph: 9758 5522  or  Erin.Weegburg@ioe.org.au

13th August 2015
HeartKids Trivia night

Fancy filling a Thursday night with some Trivia fun & re-connect or meet other adults with congenital heart disease? Then come down for a casual meal and a few rounds of trivia. 
Location: Cornish Arms Hotel - 163A Sydney Rd, Brunswick
Trivia starts at 7:30pm but if you want to have dinner prior please arrive at 6:00pm! 
RSVP: 11 August, rebecca.peters@heartkids.org.au
* Please note you must be over 18 to attend

13th August 2015
Peer Support Network Meeting: Successes and difficulties when facilitating Peer Support Groups
We all know that there is an opportunity to change the mindset of health professionals towards the role of peer support in chronic disease management. The August PSN meeting will be an opportunity for members to feed into the development of two to three video clips that aims to do just that and more.
 
Health Issues Centre, through the Health Conditions Support Grant, will be working on these videos over the next year. It is hoped that these videos become a useful advocacy tool for peer support groups and condition-specific organisations like yourselves. At the meeting, we will be discussing:
 
- the purpose of videos
- potential target audiences
- key messages that should be portrayed in the video
- potential peer support groups, health professionals and organisations who might want to be involved and have their say.

Time: 2pm-4pm
Venue: Health Issues Centre, Level 8, 255 Bourke Street, Melbourne VIC 3000
Contact: Phone: (03) 9664 9343 Email: info@healthissuescentre.org.au

14th August 2015
Free Musical Melody - Muscular Dystrophy Australia

11:00 AM - 12:00 PM 
"Dusty, Doris and Me": Wendy Stapleton performing Dusty Springfield and Doris Day medleys.  Morning tea of scones with jam and cream provided. To make your booking call maria at MDA at the latest 7th August on 9320-9555. Location: Darebin Arts Centre Cnr Bell Street and St Georges Road, Preston. 

15th August 2015
Ballarat Lymphoedema Education & Exercise Support Group meeting

A Get together and Education Session to help answer questions people may have. Gold coin donation. With Devonshire tea supplied booking essential. Ph 0417155511

17th & 18th August 2015
‘Understanding and Managing your Child’s Learning & Behavioural Needs’ - Scullin ACT

The Cerebral Palsy Alliance is hosting a FREE workshop on ‘Understanding and Managing your Child’s Learning & Behavioural Needs’ in Scullin ACT. There is a morning & evening session and everyone is welcome to attend. If you would like more information or register online, follow the links: Monday 17th 6pm-7:30 or Tuesday 18th 10am-11:30am.

17th & 18th August 2015
Down Syndrome Victoria Comes to You

DSV staff will be visiting Bairnsdale on Monday 17th August & Tuesday 18th August....And we would love to catch up with you. There will be several opportunities for you to meet with us, all to be held at the: Bairnsdale Neighbourhood House, 27 Dalmahoy St, Bairnsdale

• Monday 17 August 7.00pm to 9.00pm 
Come and meet the staff from DSV, light supper provided. Come and meet Jo Harris (Education consultant), Sue Blandford (Family Support) and Kerry Hands (Adult Support). Let us know what's important to you and learn how we can support you through all stages of your son or daughter's life

• Tuesday 18 August - 9.45am - 12.30pm 
Workshop 1 Down syndrome family support workshop: a free workshop for families of young children, includes morning tea.

• Tuesday 18 August - 12.45pm - 3.30pm 
Workshop 2 Teaching Students with Down syndrome 
A presentation from Jo Harris Education consultant for Educational professionals and parents
Cost is $55 incl. GST. Includes afternoon tea.

RSVP by email to familysupport@dsav.asn.au or phone 1300 658 873 and note any dietary needs (vegetarian, gluten free etc) 

17th August 2015
Parenting a child with chronic illness webinar

The impact of a child’s chronic illness can be challenging for families. Symptoms and treatment can affect regular activities, play and school attendance, which in turn may affect the relationship between parents and children and create additional sources of stress and anxiety. If you are the parent or carer of a young person with a chronic illness you may like to register for a free webinar being offered by Arthritis and Osteoporosis Victoria on  Monday, 17th August 2015, from 7pm – 8pm AEST. See the flyer.


21st, 25th, 31st August 2015

Fragile X syndrome and FXTAS events

Hosted by Fragile X Association of Australia, Dr Randi Hagerman and Dr Paul Hagerman will be in Australia in August! They'll share with us the latest on Fragile X syndrome and FXTAS, presenting at events in MELBOURNE 21 Aug (12-3:30pm), PERTH 25 Aug (5:30-8:30pm), and SYDNEY 31 Aug (9:30am-2pm). Register here



30th October - 1st November 2015
NF Family Camp

The first Victorian NF Family Camp is due to be held this spring at Portsea Camp from Friday 30 October to Sunday 1 November 2015. Further details including costs will be advised. We are now taking expressions of interest. Please complete the form here.
 

In the media

Mutation in a non-coding RNA found to cause inherited eye condition 
A mutation in miR-204 (a non-coding RNA) has been found to be the cause of an inherited eye condition called retinal dystrophy associated with ocular coloboma. Patients with coloboma are born with a hole in one of the structures of their eye, such as the iris or retina, which fails to close up. Read more here.

Research provides hope for those with inherited blindness
People with hereditary retinal degenerative disease experience a progressive loss of the light-sensing photoreceptor cells, caused by any of over 250 genetic mutations. There is currently no cure for retinal degenerative disease, but there are several promising areas of research that aim to, at least, partially restore vision. Recent work is looking at using gene replacement therapy to replace the mutated gene with a healthy gene. Read more here.

Hereditary hemochromatosis research
Hereditary hemochromatosis is found most often in people of Northern European descent. Over several years, those with the disorder will see excess iron get into the liver, heart, pancreas, joints and pituitary gland, leading to health problems such as cirrhosis of the liver, liver cancer, diabetes, heart disease and joint disease. People with the disease can get their blood drawn routinely to get rid of the excess iron. Until recently, it was not known how the iron got taken up by the liver. Recent work has shown that that ZIP14 is the protein responsible, paving the way for the design of medications targeting ZIP14 to prevent iron from loading in the liver. Read more here

Nican forced to close due to Federal funding cuts 
Nican was forced to close its ACT office in late June due to funding cuts. For the last three decades, Nican provided a national database and information referral service that linked people with a disability to accessible accommodation, recreation, transport, equipment and other services. More info here.

First Medicinal Treatment for Mitochondrial Disease Announced
Research into Leber’s Hereditary Optic Neuropathy (LHON) has led to the first medicinal treatment for a mitochondrial disease. The European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has recommended granting a marketing authorisation for Raxone®, an idebenone treatment that has been shown to greatly improve the sight of patients suffering with LHON. Media release.

Gene therapy research for genetic causes of hearing loss and motor neurone disease (MND)
Researchers have used gene therapy to cure deafness in mice, and extended the lifespan of mice with MND, offering hope of treatment for congenital deafness in children and people with MND. Read more about the deafness research here and the MND research here.

Facioscapulohumeral muscular dystrophy (FSHD) gene function discovery
Facioscapulohumeral muscular dystrophy (FSHD) is an inherited condition that affects one in 8000 children. FSHD is a progressive wasting disease that affects the face, arms and shoulders. It is most commonly diagnosed in teenage or early adults, and though it is rarely fatal it is very debilitating. Melbourne researchers have made inroads in understanding how one of the genes involved in the condition, Smchd1 acts on DNA to shield other genes from activation. Read more here.
 
Gene changes that increase susceptibility to MS
There are now over 110 genetic changes that are known to increase an individual’s susceptibility to MS. A new Australian study has revealed that a genetic change that increases the risk of developing MS leads to lower levels of CD40 in immune cell subtypes known as B cells and dendritic cells. Read more here.

Genetic links to depression
Two genetic variants that are associated with major depressive disorder, a particularly severe and recurrent form of depression, were recently reported in the journal Nature. These results could help to boost our understanding of the causes of this complex, common mental disorder. Read the paper here.

Recently released ASHG Position Statement Provides Guidance for Genetic Testing in Children and Adolescents
Read more here and here.
 

Conferences

8th - 9th August 2015
Androgen Insensitivity Syndrome Support Group Australia Annual Conference 

Brisbane - more info here.

23rd August 2015
VCFS 22q11 Foundation Family Conference

Sydney - more info here.

29th August 2015
Cystic Fibrosis Victoria Community Conference

8:30am - 4.30pm
Where:  Augustine Centre, 2 Minona Street, Hawthorn
Register your attendance today - support@cfv.org.au. More info here.

1st - 4th September 2015
13th Australian Palliative Care Conference

The conference will bring together delegates from across Australia and the world to explore the importance of palliative care in all its dimensions. Clinicians, researchers, volunteers, allied health practitioners, educators, carers and all those who have a passion for palliative care will share best practice, hear the latest research, be challenged by keynote speakers and build valuable networks. More info.


Also check out ‘Small Talk’ – the Short Statured People of Australia's (SSPA) Official Radio Show on 3CR (855AM Melbourne). Local and international information on community and current affairs affecting short statured people.
 

Resources

Peace of Mind Foundation Financial Aid for Brain Cancer
The Peace of Mind Foundation provides financial aid grants to help people with brain cancers, in Victoria (where they are based) and all across Australia. Click here to find out more.

NDIS webinar
This webinar outlines improvments that have been made in response to recent feedback. Watch here.

Accessible Melbourne Guide
Lonely Planet has released their Accessible Melbourne Guide for 2015 - download the guide here - it is your free passport to the most relevant, up-to-date advice on what to see, with tips and recommendations for travellers with special needs.

A learning resource for all nurses caring for people affected by cancer
Cancer Australia has released the updated EdCaN, a suite of online modules and resources, which provide support and knowledge for all cancer nurses regardless of experience or setting. The resources are intended to improve care for people with cancer through professional development activities for individual nurses to meet their own learning needs, or by educators who design and implement professional development activities. Read more.

TapTapSee App
TapTapSee is a mobile camera application designed specifically for the blind and visually impaired iOS or Android users. The app utilizes the iDevice’s camera and VoiceOver functions to photograph objects and identify them out loud for the user. Download info here.

Out and About App
Out & About app is designed to assist carers and individuals with disability or mobility issues to better access their community and plan a great day out through information about accessible venues and events across metropolitan Melbourne. Find out more here

You can find other useful apps here and here.

My New Teacher Transition Booklet
A useful booklet to help children who struggle to settle each new year, get used to having a new teacher, it may help the teacher understand the child a bit easier. Download here.

Health& - online consumer health information 
Health& has brought together a multi-disciplinary team of the very best medical, creative and digital minds to revolutionise the delivery of consumer health information online.  Our mission is to facilitate engagement in happy and healthy lifestyles, promote preventative health measures and support those living with chronic illnesses. Our health platform currently houses a comprehensive search engine containing written, animated and illustrated health resources, which are designed to support health literacy. But that’s just the beginning. Very soon we will be launching a dynamic consumer health management system, which will facilitate health literacy, active health monitoring, preventative health alerts and much more.

The Australian Institute of Health and Welfare's new website about Arthritis and its comorbidities
People with arthritis often have other chronic diseases and long-term conditions. These are referred to as comorbidities - two or more health problems occurring at the same time. These new webpages explore the relationship between arthritis and other comorbid conditions that people with arthritis experience. They also present information on associated risk factors. Overall, 3 out of 4 Australians with arthritis reported at least one other chronic condition, with cardiovascular disease being the most common comorbidity (44%). People with arthritis are also more likely to be smokers, inactive or obese, compared to people without arthritis. The AIHW has prepared this information using the latest data from the Australian Bureau of Statistics 2011-12 National Health Survey. Read more here, access the website here.

Resources to help children with Dyslexia read
Access the reading resources here.
 

Community


2nd - 9th August 2015

DonateLife Week

DonateLife Week is the national awareness week to promote organ and tissue donation in Australia. - See more here.

5th -22nd August 2015
SCIENCE IN THE SQUARE - FESTIVAL @ FED SQUARE

In August, the Walter and Eliza Hall Institute will celebrate a century of discoveries by bringing Melbourne its first Science in the Square festival, during National Science Week.

Science in the Square brings science to life through entertainment, comedy, film, theatre, art and public talks at Federation Square. We have more than two weeks of great events to help us mark this exciting occasion, come down to Fed Square and join in the fun!

Walter and Eliza’s Big Night Out
15 August @ 7:30pm – $35 + bf
Join MC Paul McDermott, Rod Quantock and an all-star cast of comedians on a journey of discovery. Watch science and comedy collide in a stage show with a twist! Deakin Edge, Fed Square.

Silver Screen Science
20–22 August @ 7pm – free (registration required)
Three epic science fiction films – Contagion, Outbreak and Gattaca – over three nights. After each screening, dissect the actual from the absurd with an entertaining panel of scientists and science fiction writers. (M15+). ACMI, Fed Square.

Talking Science: will there ever be a cure for cancer?
19 August @ 7pm – free (registration required)
Hear from Melbourne's leading cancer experts and discuss in an extended Q&A session. Deakin Edge, Fed Square.

Art of Science Exhibition
5–17 August @ 9:30-5:30pm – free
Beautiful scientific images created and captured by scientists at the institute. The Atrium, Fed Square.

More info here.

7th August 2015
Jeans for Genes Day

Jeans for Genes is the iconic fundraising campaign of Children’s Medical Research Institute.Each year, Australians unite by wearing their favourite jeans and outdoing each other with crazy denim outfits, and donating money or purchasing merchandise, to support genetic research. More info.



10th - 16th August 2015
Haemochromatosis awareness week

Haemochromatosis, or inherited iron overload disorder, is the most common genetic disorder in Australia (one in 200 have the genetic predisposition). It causes the body to absorb excess iron which builds up in the organs and joints over many years and eventually becomes toxic. Early symptoms include joint pains, fatigue, weakness and sexual dysfunction. If untreated it can lead to more serious and potentially fatal symptoms including diabetes, liver cancer and cirrhosis, heart failure and osteoarthritis. More info.

14th August 2015
Dystonia Seminar

9:30am - 3pm at the Garvan Institute. Email info@dystonia.org.au or see dystonia.org.au for more info. Please RSVP Email: info@geneticalliance.org.au or 02 9295 8359. 

14th August 2015
Aspergers Victoria Siblings Support Group
When:
7:30pm – 9:30pm
Where: The Nerve Centre, 54 Railway Road Blackburn (map)
Description: For school aged children in years 1-7 who have a sibling with Aspergers or high functioning autism. The social group provides fun activities and opportunities for the children to share stories and strategies, while their parents/carers chat in the adjoining room. More details.

23rd - 29th August 2015
Hearing Awareness Week 

Hearing impairment, or deafness, is when your hearing is affected by a condition or injury. Some people are born with a hearing loss while others may develop it as they get older. One in six Australians is hearing impaired, Deaf or has an ear disorder. Resources and events are listed on the website.

23rd - 29th August 2015
Speech Pathology Week 

The national promotional postcards have hit unis, cafes, bars. #Talkwithme about ending communication difficulties in Australia this #SPweek.

24th - 30th August 2015
VCFS 22q11 Awareness Week

Deletion 22q11.2 also known as Velo Cardio Facial Syndrome (VCFS) affects approx. 1 in 2000 – 3000 persons making it the second most prevalent genetic syndrome after Down syndrome but yet no one really knows about it!
  • It is the most common genetic syndrome associated with cleft palates.
  • The second most common genetic syndrome associated with congenital heart defects.
  • 99% of the VCFS population will have a learning difficulty or disability
  • 30% of the VCFS population will develop a mental illness.
The last week in August is VCFS 22q11 Awareness Week and we ask people to raise awareness by wearing Pink & Blue, using #22qAwareness on social media and hosting a Pink & Blue fundraiser – more details are on the website.


28th August 2015

Daffodil Day

Help raise much needed funds, to go towards vital cancer research, prevention programs and patient support for the many Australians affected by cancer. More info.


31st August - 4th September 2015
National Superhero Week

Bring your Super Powers and a gold coin donation and come to school or your workplace dressed up as your favourite superhero or better yet, invent one! More info here.

9th September 2015
RIDE Wheelchair Soccer Tournament

Reigning champions the “WATCH WARRIORS” will be defending their title at the annual RIDE Wheelchair Soccer Tournament, hosted in partnership with Scope. The winning team will receive certificates and a night at the movies. See the flyer for more info.

9th September 2015
RIDE Disability Expo 

Discover the respite possibilities at the largest disability expo for people with disability, carers and service providers in the Eastern Metropolitan Region. The event will showcase over 80 information services. The 2015 Expo promises to be informative, engaging and lots of fun with pampering and an all ability wheelchair soccer tournament. See the flyer for more info.

21st September - 1st October 2015
Australian Transplant Games

The Australian Transplant Games are a celebration of the 2nd chance of life received through organ and tissue donation. The Games unite all those touched by donation including transplant recipients, donor families, living donors and those waiting for a transplant, as well as their families and friends. Through sports, games and various cultural events, competitors benchmark their renewed health and wellness and say thank you to organ and tissue donors. More info.


 

Research

Leigh syndrome patient registry
peopleagainstleighs.org

Volunteer Blood Donor Registry
New scientific techniques, such as a blood test or imaging device, need blood from a range of people to define the limits of ‘normal’. These ‘normal’ recordings allow researchers to understand how diseases impact blood cells and the immune system. Contribute to medical research; sign up for the Volunteer Blood Donor Registry: www.blooddonorregistry.org

Parent carers’ perspectives on their relationships with complex service systems
You are invited to participate in a study of parents who are caring for a child (including adult children) with a genetic condition requiring high-level care.
The purpose of the study is to understand the relationships that parents have with the many services they are in contact with as a result of their caring role (for example health, education, disability, finance, employment).
This information will help to guide future policies that affect parents who are caring for children with high-level care needs.
If you would like to know more at any stage, please feel welcome to contact: Pam Joseph, PhD candidate, Faculty of Education and Social Work, University of Sydney. Ph: 0435 532 074

Experiences of people with intellectual disability
Ryan Thorneycroft is is currently undertaking a PhD at the University of Western Sydney and is doing research into people with intellectual disability and their life experiences, with a particular focus on criminal victimisation that may be prejudicially motivated. If you would like to take part in this survey please click here.

Survey of peer support and advocacy organisations for people with disorders of sex development (DSD).
The purpose of this survey is to understand the process of how peer support and advocacy organisations provide their services and the extent of variation that currently exists. We also aim to explore the level of communication with healthcare professionals and the collaboration with other peer support groups.

We are also keen to identify areas of research and service development that should be prioritised for the future and in the current survey we want to understand this from the perspective of parents, advocacy groups and individuals with DSD.

This survey is being performed by Working Group 4 of DSDnet. Further details of their remit can be obtained from www.dsdnet.eu

We would appreciate your time in completing this questionnaire, which should not take more than 30 minutes, by clicking on the link here.

Current levels of access and attainment for students with disability in the school system, and the impact on students and families associated with inadequate levels of support
Concerns regarding accessing and participating in education have been some of the most significant challenges reported to Children with Disability Australia (CDA) by its members over many years. A Senate Inquiry was announced last month into current levels of access and attainment for students with disability in the school system, and the impact on students and families associated with inadequate levels of support. CDA is calling on students with disability and their families to contribute to the Senate Inquiry currently underway regarding education. It is vital that a strong and large representation is made to this Inquiry which clearly illustrates the range of issues students with disability and families contend with. 

INDIVIDUAL SUBMISSIONS
Students and families are strongly encouraged to make an individual submission to the Inquiry. These can be of any length. Often a paragraph or two which describes an event or circumstance can be very powerful. Others, may wish to make lengthier submissions which would be well received. 

CONTRIBUTING TO CDA’S SUBMISSION
CDA will also be providing an organisational submission to this important Inquiry. CDA is also keen to obtain feedback from students and families about what issues should be included in its submission. You may also wish to provide details of your direct experience for consideration in CDA’s submission which can be presented anonymously if preferred. 

SENATE INQUIRY TERMS OF REFERENCE
a) current levels of access and attainment for students with disability in the school system, and the impact on students and families associated with inadequate levels of support;
b) the social, economic and personal benefits of improving outcomes for students with disability at school and in further education and employment;
c) the impact on policies and the education practice of individual education sectors as a result of the More Support for Students with Disabilities program, and the impact of the cessation of this program in 2014 on schools and students;
d) the future impact on students with disability as a result of the Government‘s decision to index funding for schools at the consumer price index after 2017;
e) the progress of the implementation of the needs-based funding system as stated in the Australian Education Act;
f) the progress of the Nationally Consistent Collection of Data on School Students with Disability and the findings, recommendations and outcomes from this process, and how this data will, or should, be used to develop a needs-based funding system for students with disability;
g) how possible changes as a result of the Nationally Consistent Collection of Data on School Students with Disability will be informed by evidence-based best practice of inclusion of students with disability;
h) what should be done to better support students with disability in our schools;
i) the early education of children with disability; and
j) any other related matters.

HOW TO MAKE A SUBMISSION
Assistance can be provided by CDA to make an individual submission or you can provide feedback to inform CDA’s submission. This can be done by email at info@cda.org.au or by phone on 1800 222 660. Submissions can be lodged directly to the Senate online by selecting ‘upload submission’ at goo.gl/y8S9BK 
Alternatively, submissions can be provided via post. Please ensure that all posted submissions are signed and include your name, phone number and postal address so they can be verified by the Committee. Submissions should be sent to the following address:

Committee Secretary
Senate Education and Employment Committees
PO Box 6100
Parliament House
Canberra ACT 2600
 

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.
  • Constitutional Mismatch Repair Deficiency (CMMRD)
  • Ehlers-Danlos syndrome coexisting with Lynch syndrome
  • Hajdu Cheney syndrome
  • Megalencephaly Capillary Malformation (MCAP) syndrome
  • Milroy disease
  • Neutropenia
  • Pantothenate Kinase-associated Neurodegeneration
  • Schizencephaly
  • Succinic Semialdehyde Dehydrogenase Deficiency (SSADH)
  • 4q34 deletion
  • 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


The Who’s in Charge? A 7-week program for parents or carers of young people (8 to 18) who are beyond control, violent or defiant.

The Who’s in Charge? group is a 7-week program for parents or carers of young people (8 to 18) who are beyond control, violent or defiant.

The group aims to:
  • Provide a supportive environment to share experiences and ideas
  • Reduce the guilt and shame which most parents feel
  • Offer ideas to help you develop individual strategies for managing your  child’s behaviour
Explore ways of increasing safety and wellbeing. Help you feel more in control and less stressed
 
When:– Wednesdays 21st October to 2nd December 2015
 
Time: – 12.00pm—2.30pm Enrolments essential*
 
Where: – EV’s Youth Centre 212 Mt Dandenong Rd, Croydon Cost: – Free of charge
 
*Enquiries & Enrolment (essential):

Contact Lea on 9724 222 (Connections) or Rima on 9801 6088 (headspace)

Further info on violence to parents: www.eddiegallagher.id.au

Bereavement Workshops

The Australian Centre for Grief and Bereavement offers quality education and training opportunities for health professionals, students, volunteers and other individuals or agencies desiring to enhance grief and bereavement knowledge and practice.

The following workshops will be held in Victoria:

The Therapeutic Self, Mindulness and Self-Care in Bereavement Support
Thursday, 6th August 2015

The Silent Grief: Providing Bereavement Support to Women Experiencing Post-Abortion Grief
Wednesday, 12th August 2015

The Impact of Trauma, Separation and Loss for Children, Parents and Families
Wednesday, 26th August 2015

Tree of Life: Integrating the Narrative and Creative Arts
Wednesday, 9th September 2015

Transforming and Integrating Abandonment and Vulnerability in the Traumatically Bereaved
Wednesday, 16th September 2015

Understanding and Supporting Perinatal Loss
Thursday, 24th September 2015

Providing Bereavement Support Following Violent or Traumatic Deaths, Including Homicide
Tuesday, 6th October 2015

Mindful Somatic Experiencing as an Effective Tool for Complicated Grief
Thursday, 15th October 2015

Living Into Loss -
Anticipatory Grief
Thursday, 29th October 2015

Recent Developments in Bereavement: Bridging From Theory to Practice
Tuesday, 10th November 2015

Engaging in Effective Brief Contact or Single-Session Bereavement Support
Tuesday, 17th November 2015

More info here.

Launch of the 2015 Victorian Public Healthcare Awards  

The Victorian Public Healthcare Awards are our annual account of excellence and innovation in public health, health services and service initiatives that deliver innovative, informed and effective healthcare.

The 2015 Awards reflect priority areas in healthcare identified by the government and focus on the sectors’ ability to drive change and improve health outcomes for all Victorians. Award categories for 2015 include:
  • Improving health equality and closing the gap
  • Excellence in person, family and community centred care
  • Improving health, safety and well-being
  • Innovative models of care
  • Improving healthcare through clinical research
  • Excellence in women’s health
There will also be four Key Direction awards for excellence in healthcare bestowed by the Premier of Victoria, Minister for Health, Minister for Mental Health and Secretary, Department of Health & Human Services. These Key Direction awards will recognise outstanding work at the forefront of health improvement and innovation in the priority areas selected by the Awards’ patrons. Further details on these awards will be made available on www.health.vic.gov.au/healthcareawards week commencing 6 July, 2015.

The 2015 Health Service of the Year Awards have been divided into the following categories. To find out which category your health service comes under please visit the Healthcare Awards website for a full listing.
  • Large health service
  • Medium health service
  • Small health service
  • Primary health service
Entries for the 2015 Victorian Public Healthcare Awards program will open 10 July and close 14 August 2015.

For more information, including details on how to enter, please click here.

Free workshop: Healthy Mothers Healthy Families

Healthy Mothers Healthy Families is a program for women seeking to achieve better health, wellbeing and empowerment for themselves as they manage family duties. The program is presented by an occupational therapist, Dr Helen Bourke-Taylor, and a women’s health general practitioner, Dr Fiona Jane.
 
When: 21 August 2015
Where: Simmonds Stadium, Geelong 
The event is full catered and sponsored by nib foundation. Participants will receive a manual and workbook. More

Seminars

COPING WITH CHANGES IN BEHAVIOUR

Start Date: 
Wednesday, 12 August 2015 - 8:30pm
End Date: 
Wednesday, 12 August 2015 - 6:00pm
Address: 
98-104 Riversdale Road Hawthorn VIC 3122
Organisation: 
Alzheimer's Australia Vic

This program deals with some of the changes in behaviour caused by dementia as well as the possible triggers to these behaviours. We teach participants a problem-solving approach which helps carers to understand and better manage these changes.

Suitable for family carers who need support coping with changed behaviours. Click here to book your place!


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AGEING, HOMELESSNESS AND DEMENTIA

Start Date
Monday, 8 September 2014 - 9:00am
End Date: 
Thursday, 10 September 2015 - 3:00pm

Alzheimer’s Australia NSW in partnership with Homelessness NSW is hosting seminars in Tweed Heads and Orange to raise awareness of dementia and cognitive decline among those who are homeless or at risk of homelessness. It aims to highlight the vulnerabilities of this population in terms of risk of dementia and increase understanding of homelessness amongst aged care service providers from residential, community and health sectors.

Tweed Heads
Tuesday 8 Sept
Tweed Civic Centre Auditorium, Wharf Street
Read the flier or register

Orange
Thursday 10 Sept
Environmental Learning Centre, Orange Showgrounds
Read the flier or register

OVERLOAD Hobart art exhibition  

An exciting art exhibition of works by well-known Australian artists and photographers will open in Wollongong in August. The exhibition will help raise awareness of haemochromatosis and funds for Haemochromatosis Australia. Twenty-one artists including 2014 Archibald Prize finalists Anh Do and Paul Ryan, 2013 Behind the Lines Cartoonist of the Year David Rowe and Woolsheds photographer Andrew Chapman will exhibit works. Many of the artists have a personal connection to haemochromatosis with the common inherited iron overload disorder touching their lives.

More info here 

Official opening Saturday 8 August at 7pm. Master of Ceremonies Mr Nick Whitlam.

The exhibition will be open Wednesday - Sunday from 5 - 16 August. Come along and have look.

Cuppa for HeartKids

Running throughout August and September every year, Cuppa for HeartKids is a national community awareness and fundraising campaign to support HeartKids and its work. To find out more or register as a host, please check out the Cuppa website. You can also contact your local HeartKids for more information.

Corporate and community education programs

Scope’s education programs are workshop-style education programs guiding organisations on how to interact and communicate with people with a disability.

Organisations have told us that our key message of “see the person, not the disability” has improved communication strategies across the board, creating happier more accepting workplaces.

We offer programs to businesses, organisations, local governments and community groups across Victoria. Programs can be tailored to suit the goals of your organisation.

More info here.

MS Art Exhibition

The annual MS Art Exhibition is a collection of works of the inspiring artists who participate in the MS Social Support Day Program.

Please join us to celebrate their work, share their journey and experience their enthusiasm for art. The Official Opening is at 11am Friday 7 August — download the invitation for more details or contact MS Connect™ (Freecall 1800 042 138) for more information.  

The exhibition is also open for public viewing: 9am to 5pm, Monday 10 August to Friday 19 August The Nerve Centre 54 Railway Road, Blackburn Vic 

An Evening with Raelene Dundon
 
Using Video Modelling and Movie Making to teach social skills to children 

This workshop will discuss the ways video modelling and movie making can be used as tools to teach social skills to children with Aspergers/Autism Spectrum. 

Suitable for families with primary aged children and teens.
 
Raelene is the Director of Okey Dokey Childhood Psychology. She is a registered Psychologist and holds a Masters Degree in Educational and Developmental Psychology. She has extensive experience in working with children with an Autism Spectrum Disorder, and children with other kinds of developmental delays, as well as typically developing children requiring educational, social/emotional or behavioural support.  Raelene is the author Of “Max and Barnaby” book series.

Raelene has presented reviews of current research at conferences in Canberra and New York - particularly focussing on the role of fathers in families with a child with special needs. Raelene regularly presents workshops for parents and professionals on topics related to supporting children with special needs in the classroom and in other settings. She also speaks on topics related to iOS apps (for the iPhone and iPad) which are suitable for children with additional needs. Raelene is also an external thesis examiner for Masters students in the Education Department at Monash University - particularly those theses which focus on early childhood education.
 
Raelene has worked extensively in early childhood intervention settings including at Yooralla and Irabina Childhood Autism Services. Raelene regularly works with schools to provide individual student and staff support, as well as running social skills groups for students.
 
DATE: Wednesday August 26, 2015
TIME: 7.30—9.30 pm, followed by a light supper.

Doors open at 7pm

VENUE: The Nerve Centre,  54 Railway Rd, Blackburn VIC 3130
COST: Aspergers Vic members: single $15. Non-members: single $30      
TO BOOK: Book and pay online here.

Registrations close 4pm, 26th August, 2015.

BOOK EARLY TO AVOID DISAPPOINTMENT.
 

Call for Applications: Creative Research Residency

The Australian Network for Art & Technology, with Access2Arts (AUS), Unlimited (UK) and Watershed (UK), is calling for applications from Australian and UK artists with disability or who are Deaf for Unfixed, a creative research residency that is taking place in Australia later this year. Check out all the details here.

Deadline:  Friday 7 August 2015

Book – Little People BIG LIVES

Carole Lander interviewed 12 people living with dwarfism and presents their stories in this book, along with facts about their medical conditions, their history and their involvement in the arts and sport.

The book was launched at the 2013 SSPA Annual Convention and is on sale at selected shops as well as online. More information here.
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