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Bits and Pieces October 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,

I’m very excited to be the newest member of the GSNV team, joining in April this year. A little bit about me - I am a psychological researcher with experience in the onco-genomic setting. I completed a Bachelor of Arts (Honours in Psychology) at The University of Sydney. Since studying, I have further developed my interests in health psychology and biostatistics through my position as a member of the Psychosocial Onco-genomic Research Group at the Peter MacCallum Cancer Centre. Through this role, I have helped to generate research exploring the lived experiences of families with inherited cancer syndromes and I am engaged in the translation of genetic research findings into clinical practice.

Now, together with the GSNV staff and key stakeholder representatives, I am applying my experience and training in mixed research methodologies to design and conduct a comprehensive evaluation of the GSNV. The findings of this 12-month project will elucidate the needs of service users and inform organisational reform, ultimately enhancing the GSNV’s value within the genetics health community.

The 12-month project is on track with significant headway already achieved the first stage of the evaluation. Analysis of the GSNV internal database is now underway with special thanks to GSNV volunteer, Elaine Stackpoole, for her data cleaning assistance. Preliminary findings and a progress report will be provided in an up-coming edition of the newsletter.


Victoria Rasmussen 

Vale, Professor Richard Cotton
The GSNV wishes to acknowledge the passing of Professor Richard (Dick) Cotton. The GSNV has had the pleasure of working with Richard throughout the years and we'd like to acknowledge his exceptional contribution to the world of genetics health and genetic discovery. 

 

Support group news



7th October 2015

Vision Hearing Support Club - Forum

Further information - contact Gary Daly gary.daly@ableaustralia.org.au. Visit the Able Australia website. Updates will be posted here.





13th October 2015
Hidden "Gems" Golf Day

Supporting the Sanfilippo Children's Foundation, the Hidden "Gems" Golf Day is a fund raiser for vital research funds to fund a clinical gene therapy trial for an effective treatment for Sanfilippo Syndrome. More info here.



18th October 2015
Annual Information Day for those living with BRCA1/2 gene faults - Sydney
This is an information day with presentations from doctors, genetic counsellors and individuals. Conducted in an informal setting, the day gives people the opportunity to receive up to date information and the chance to share stories, to network and to ask questions. You can register either online or by contacting Dianne (02 9295 8359, info@geneticalliance.org.au).

22nd October 2015
NDIS transition info session - Monash PSN Support Group (Mount St, Glen Waverley) 
This session is aimed at assisting families prepare for transition to the NDIS:
  • Basics of the NDIS, who, what & how it funds support
  • Hear some of the current concerns and issues
  • Look at ways you can prepare now, so you can be confident to negotiate the best package of supports for your family member
More info and book here.




31st October 2015
A Heartfelt Thanks Gala Dinner

Held at The Vue, Docklands at 6:30pm with proceeds donated to the Cardiac Ward at The Royal Children's Hospital.

7th November 2015
Triple X Syndrome
Networking Lunch & Bella Workshop - Sydney
Attendees of the Seminar are invited to join in on a networking lunch (at a small cost to you). So that the girls can meet each other, they are invited to participate in a special Bella Art Workshop run by the Museum of Contemporary Art in Circular Quay. This includes gallery exploration, a visit to the interactive Bella Room and practical art making activities. See the flyer for more info.

8th November 2015
Triple X Syndrome Seminar - Darlinghurst NSW
  • Dr. Meredith Wilson - Clinical Geneticist The Children’s Hospital at Westmead “Premature Ovarian Failure”
  • Dr. Amanda Wiart – Dphil Immunogenetics The University of Oxford- “What you need to know about genetic conditions”
  • Dr. Racha El-hajj - Cytogeneticist The Children’s Hospital at Westmead “Genotype/phenotype of Triple X mosaicism and current research”
  • Dr. Mridula Sharma - Associate Professor Macquarie University “Auditory processing disorder”
  • Amanda Miller -Primary School Teacher, St Finbar’s Primary School “Providing educational support to girls with Triple X Syndrome”
  • Naomi Pugsley – “Personal Story” 
  • Speaker TBC - “Psychosocial and behavioural issues”
See the flyer for more info.

14th November 2015
GSNV Peer Support Training

Peer support training is available for all individuals, including staff from support groups. It is a one day workshop and our aim is to help you feel empowered to listen and talk to others who are in a similar position, and share your wisdom and experience.
The training will include:
  • active listening
  • communication skills
  • empowerment
  • self-care
  • community resources
  • information about GSNV and what we can do to help the process.
You will receive a certificate upon completion as well as an invitation to become a  Peer Support contact with the Genetic Support Network of Victoria. For more info or to RSVP: email info@gsnv.org.au. Also see the flyer. FREE for members! Info on how to be a member can be found here.

 
27th November 2015
Christmas Breakfast for CF 

Melbourne Zoo, see the flyer for more details.

28th January 2016 - Save the date
Neuromuscular Support Group for Young Adults Seminar 

Guest speaker Karni Liddell, former Paralympian. More details TBA.
 

In the media

NDIS in Victoria update
The Premier, Daniel Andrews has recently signed an historic bilateral agreement with the Commonwealth outlining the rollout of the National Disability Insurance Scheme (NDIS) in Victoria over the next three years. The agreement means a more than doubling of the current funding for disability support and is expected to benefit an estimated 105,000 Victorians. Find out more here.

Megan Fookes of Rave Voices Australia, nominated for Australian of the Year awards
The GSNV congratulates Megan Fookes, director of RVA, for her nomination in recognition her achievements in advocacy and her campaign work for a national rare disease policy. Read more here.

Childhood diseases genetic breakthrough
A study with almost 17,000 participants has uncovered genes involved in auto-immune disorders such as type 1 diabetes, juvenile arthritis, Crohn’s disease and a severe type of lupus. The findings include common genetic mechanisms behind different conditions, opening up the possibilities for using the same drugs to treat conditions that share similar genetic components. Read more here

Senate call for audio description
The Australian Senate has supported a motion which could force television stations to introduce audio description services for people who are blind or have low vision. Australian Greens Senator Rachel Siewert, who raised the motion, said Australia had fallen behind the rest of the world, "with approximately 350,000 people in Australia who are blind or have low vision, this is simply not good enough". Read more here.

Pulmonary hypertension gene discovery
Scientists in the UK have uncovered a role for the gene Slc39a12 in pulmonary hypertension. Pulmonary hypertension is a life-threatening condition characterised by the increase of blood pressure in the arteries that transport blood from the heart to the lungs, leading to the gradual blockage of vessels that carry blood to and from the lungs, and can cause difficulties in breathing, right-sided heart failure and eventually death. Read more here.

Boston Children's hospital launches competition to diagnose undiagnosed children
Boston Children's Hospital has recently launched a competition to interpret genomic information and identify the molecular cause of five pediatric patients' undiagnosed disorders. Registered bioinformatics teams have been given access to patients' whole-genome and exome sequence data and will compete for $25,000 for finding the cause of the children's disease. Read more here.

Peter Mac researchers' acute myeloid leukaemia (AML) discovery
Researchers at the Peter MacCallum Cancer Centre (Melbourne) have for the first time figured out how to grow AML cells in culture, and have discovered the way these cells become resistant to chemotherapy. This new understanding will help researchers develop new interventions that will help prevent resistance to therapy and thereby prevent progression of the disease. A clinical trial for a new treatment is also underway. More info here.


 

Conferences

9th - 10th October 2015
The 9th Bi-annual Australian Wolf Hirschhorn Syndrome Support Group Conference - Queensland

For more information or to sign up to the mailing list contact whs-aust@hotmail.com



22nd October 2015
3rd BTAA National Summit, Lunch and CCQ Support Forum - Queensland

National summit for brain tumour advocates. Find out more here.

24th October 2015
Motor Neurone Disease Symposium - Queensland

Registrations for Queensland MND Symposium are now open! Registration is free and open to wider MND community. Featuring national and international experts, the symposium will include research updates on factors that cause and progress MND, and potential cures. More info here.

14th - 15th November 2015
Australian Tuberous Sclerosis Conference

Medical and family meetings include TSC expert international and Australian speakers covering a wide range of topics. Registration is now open. You can register online or send through a paper form. Please contact Clare Stuart (clare@tsa.org.au or 0410 685 181) if you have any difficulties registering.


19th - 21st November 2015
First ever Rett Syndrome Association Australia conference on Rett syndrome - Geelong

Conference theme:   ‘The Rett Syndrome Journey: Pathways to Follow”
‘Pathways to Follow’ on the journey with Rett syndrome can include caring for the carer, acquiring equipment, living as a family, living away from home, managing health, schooling, being an adult, stimulating activities, applying and maintaining various therapies, exploring and instituting communication methods and techniques, establishing links with other families, to name just a few. Additional information about the occasion can be found in the ‘News’ component of the RSAA website. See Flyer.

25th November 2015
Autism Spectrum Disorder Research Forum 

The Autism Spectrum Disorder Research Forum provides an excellent opportunity to hear about Autism Spectrum Disorder research currently being undertaken by Victorian research teams, including that being completed by undergraduate and postgraduate students. The day will provide an opportunity to share common interests in the autism research field. It will be suitable for all autism researchers, including students, clinicians and autism educators, as well as parents interested in Victorian autism research. Please note that the forum will focus on research matters, and participants should have a reasonable knowledge of Autism Spectrum Disorders and research methodology. More info here.


 

Resources

HHT quick facts for health care professionals
The #1 piece of advice you all suggested for people newly diagnosed with HHT is to be your own advocate. Here is a printout to help with that.

Respite Care Guide for carers of people with dementia
Download the guide here.

Career finder
Answer questions and the redcross will recommend you a personalised career path. Start here.

NRS App
The NRS app gives National Relay Service users mobile access to a range of NRS services.

OpenAccess Alerts
OpenAccess Alerts is a useful mobile app for people who are Deaf or hearing impaired, providing up-to-date and easy-to-read information about what’s going on around them.

OpenAccess Chat
OpenAccess chat offers an affordable, mobile and flexible face to face communication channel for Deaf and hard of hearing individuals to interact with anyone.

FSHD – Find the Cure app 
This app allows donors to confidentially see which research projects their donations have been invested in – an Australian first. Find it on iTunes and Google Play.

Primary Health Care Advisory Group webcast
Consultations have been recently held on the reform agenda for primary care for people with chronic illness. See the webcast here.
 

Community

International Lupus Month
Lupus is a chronic autoimmune disease in which the immune system produces antibodies to cells within the body leading to widespread inflammation and tissue damage. Find out more.

Lupus Awareness Walk (all states - CBD)
Walk for your loved ones, family, friends, in memory of and even for yourself. Official date yet to be confirmed. To register your interest email: info@lupus-sle.org


11th - 17th October 2015

Haemophilia Awareness Week

Haemophilia Awareness Week is an opportunity for individuals and families as well as Haemophilia Foundations and other organisations to take part in a campaign and activities to raise awareness about haemophilia, von Willebrand disorder and related inherited bleeding disorders throughout Australia. Read more here.

17th - 23rd October 2015
National Week of Deaf People

Theme: With Auslan Right, Deaf Children Can! The National Week of Deaf People (NWDP) is a week long national celebration of Deaf individuals and the Deaf Australian community. More info here.

18th October 2015
15th Annual BRCA Information Day
Sunday 18 October 2015, 9.00 - 3.00pm at the Royal North Shore Hospital, Pacific Highway, St Leonards, Sydney. For more information and how to register please click here.

20th October 2015
Traralgon Peer Support Group Leader Forum
Organised by Health Issues Centre together with Multiple Sclerosis Australia and Epilepsy Foundation.

Why should I attend?
  • Hear from several peer leaders who are doing some fantastic work together with their peer support group. 
  • Enhance your skills so you can continue to provide quality and sustainable peer support in our communities.
  • Meet and network with fellow regional peer support group leaders.
Who is this for?
  • Volunteer chronic disease peer support group leaders and members from regional Victoria.
  • Community members or health service staff interested in starting a new peer support group. 
See Forum Program to find out who is speaking on the day and workshop options. For more information or to register by phone please call Esther Lim at (03) 9664 9323 or email e.lim@healthissuescentre.org.au





25th - 31st October 2015
International Brain Tumour Awareness Week

Organise an activity to raise awareness about brain tumours. Find out more.






25th October 2015 - Bendigo
8th November 2015 - Melbourne

More info here.
 

Research

Lupus Clinical Trial: Belimumab (Benlysta®) Pregnancy Research Study
Participating in a clinical research study contributes to medical knowledge related to the treatment, diagnosis and prevention of diseases or conditions. The results of these studies can make a difference in the care of future patients by providing information about the benefits and risks of therapeutic, preventative or diagnostic products or interventions.

Research is the key to improving the lives of those living with lupus. Now there is a study called the Belimumab (Benlysta®) Pregnancy Registry, which is an observational study that will further evaluate the safety and effectiveness of belimumab (Benlysta®) in women who have been given (exposed to) belimumab (Benlysta®) within the 4 months prior to and/or during pregnancy. The goal of the registry is to evaluate the health of these women until they give birth, and to study the health of their babies until they are 12 months old. Participants will not have to make any extra office visits, take any extra medical tests or medications by taking part in this pregnancy registry. For more information, click here.

Survey: Adult sexual behaviour
This survey is open to all adults aged over 18 years. However, the researcher is particularly interested to include adults who identify as intersexual and are on medical lists for hormone replacement therapy (HRT). Find the survey here and the participant information sheet here.

Healthy Living after Cancer (HLaC) - a telephone-delivered healthy lifestyle coaching program for cancer survivors evaluation study
The aim of the Healthy Living after Cancer program (HLaC) is to evaluate the integration of a telephone-delivered lifestyle intervention for cancer survivors into the existing Cancer Council 13 11 20 information and support telephone service offered by Cancer Councils New South Wales, Victoria, South Australia and Western Australia. Pre- and post-program evaluation will be conducted, with a focus on program implementation (i.e., number of referrals and number of program completions) as well as assessment of patient-reported outcomes (i.e., physical activity, diet, weight, and quality of life). More info here.

Epilepsy trial 
Are you between 18-75 years of age, have diagnosed epilepsy and experience two or more seizures per month? If you answered yes, the RMH invites you to participate in a dietary therapy trial which will investigate if the high fat, low carb modified Atkin’s diet can help to reduce epileptic seizures in adults. More information about the Modified Atkins Diet for Epilepsy (MADE) trial can be found on our website.

The Bereaved PICU Parent Study 
This research study aims to explore the experiences of parents during and after the time their child passed away in a Paediatric Intensive Care (PICU) setting, and their interactions with health care providers during this time. The researchers are seeking parents whose child passed away in any Australian PICU within the last 6 months to 2 years.
What is involved? 
A meeting (interview) with the researcher to talk about your experiences, feelings, needs and perceptions of the time your child died in the PICU.
Want to know more?
Ashleigh Butler (Interviewer, PhD Candidate): 0497 270 526 abut2@student.monash.edu
Dr. Beverley Copnell (Primary Investigator): 03 9905 4836
 

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
  • Moebius Syndrome
  • Neutropenia
  • Pantothenate Kinase-associated Neurodegeneration
  • Polymicrogyria
  • 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

RJ Mitte: Overcoming Adversity

Breaking Bad star RJ Mitte, who has cerebral palsy is in Melbourne this month, speaking on "Overcoming Adversity"

Wednesday 14 October 2015, 7.30pm-8.30pm at Athenaeum Theatre

$35 and $20 concession.

More info here.

Nominate for the National Disability Awards

International Day of People with Disability (IDPwD) is a United Nations sanctioned day that occurs annually on 3 December.

The day celebrates and recognises the achievements, contributions and abilities of people with disability. The day also provides an important opportunity to raise awareness about disability issues more broadly across the community and, ultimately, to support the development of an inclusive Australian society.

The National Disability Awards (the Awards) are also held each year as part of the International Day of People with Disability celebrations.

The Awards aim to honour and recognise the outstanding achievements of individuals and organisations that have improved the lives of people with disability and thereby contributed to increased recognition of equality and human rights for all Australians.

The Award categories celebrate and acknowledge people and organisations who demonstrate excellence, passion, vision and a commitment to assisting people with disability to achieve their goals.

Head to the nomination form page for more information on how to nominate and download a copy of the 2015 National Disability Award guidelines. Nominations can be made via the online form, email or post. In 2015, submissions are being accepted for visual displays to be featured at the Awards ceremony. More information and a submission form can be found on the visual display page.

Free IT workshop

Australian Council of Social Service and Infoexchange are holding a FREE IT WORKSHOP for the Ross House community on Tuesday 6th October 2015 at 10:30am.

This snappy workshop can help your organisation benefit from your current IT and assist you when choosing the right IT in the future.

This 45 minute session will show the highlights including:
  • assessing and managing your IT
  • social media
  • working with your IT supplier
  • free and low cost staff training resources
  • Office 365 and Google Apps for non-profits
When? Tuesday 6 October (10:30am – 11:15am)
Where? Jenny Florence Room, Level 3, Ross House, 247–251 Flinders Lane, Melbourne. This event is supported by Ross House Association.

To register for this free event, please click here. Alternatively you may also RSVP by sending an email through to rosshouse@rosshouse.org.au.

Access tours at the NGV

Hermitage: The Legacy of Catherine the Great at the NGV showcases the innovation of Catherine the Great. The extraordinary works sourced and commissioned by Catherine during her 34-year reign created the foundations for the Hermitage—today considered to be one of the world’s greatest treasure houses of art.

The National Gallery of Victoria is running audio described and Auslan tours of the Hermitage collection in September and October.

Venue: NGV International 
Location: 180 St Kilda Road, Melbourne
When: 10 October 10.30am: audio described tour 1pm: Auslan tour
Cost: Exhibition costs apply
More information: Click here for information on the exhibition, or click here for more information on access at NGV International.

Yarra Ranges Support Group (Mooroolbark) -Guest Speaker – Jodie Bateman from Travellers Aid

Date: 14/10/2015
Time: 10:00 am - 12:00 pm
Location: Red Earth Room, Mooroolbark Community Centre

Assisting travellers at their point of need

Travellers Aid Australia is a not-for-profit with a 98-year history. Since 1916, we’ve supported travellers by providing simple, practical travel-related support and aid that helps them travel independently and confidently, no matter what their background. more info here.

New book - Fragile X Fred 

Great new book, co-written by Jayne Dixon Weber from the National Fragile X Foundation in the US, "to help people of all ages understand that although individuals with fragile X syndrome do have certain challenges, these challenges do not define them. This book is a valuable tool for educators, siblings, parents, and children with fragile X syndrome."

Find it on Amazon here.

ArtAbility®

Now in its 11th year, ArtAbility® is a project created by ADEC (Action on Disability within Ethnic Communities). It is a year long arts project which comprises of relaxing art workshops for people of all ages, either living with or caring for someone with a disability from culturally diverse backgrounds around Victoria. The workshops culminate at the annual exhibition, this year’s theme being Future Landscapes, once again at Federation Square’s Atrium from December 7th to 17th 2015. This project gives the artists a chance to mingle with like-minded people, connect isolated people with the larger community, raise their artist profiles, forge new career paths, build self-esteem, share their rich and diverse cultural heritages through image, colour and texture and facilitate cathartic healing through the powers of art. This year we have hosted workshops for the Turkish community of carers, Egyptian carers, children with autism, seniors and soon we will host the Chinese and Burmese communities, the latter being held in Wyndham. Come and celebrate the works of all these incredible artists at our ArtAbility exhibition. We look forward to seeing you there!

If you would like further information about ADEC or our ArtAbility project please visit the www.adec.org.au website.


CID TV Launch

Join the Council for Intellectual Disability for the launch of CID TV at the 2015 NSW CID AGM!

CID TV - news, stories, interviews, current affairs and more!

TV made by people with intellectual disability.

When
Wednesday October 21 2015

Where
ACON Meeting Centre
418 Elizabeth St, Surry Hills, Sydney. Map.

Time
5:30pm – 7.30pm

Come along and be a part of CID history

Be in the live studio audience
Have your say in a TV interview
Hear from special guests and speaker

There will be supper and drinks too!

Don't miss out - RSVP by October 14

Phone 1800 424 065

Email: mail@nswcid.org.au

Advocacy Sector Conversation Forum

Inquiries about disability abuse and laws that protect the rights of people with disability have been given great prominence in Victoria this year. Detailed perspectives on what this means for disability advocacy will be provided by our speakers:

Deborah Glass, the Victorian Omboudsman will speak about recommendations arising out of the Reporting and investigation of allegations of abuse in the disability sector phase 1 report and discuss the issues facing people with disability.

Helen Rushford, Coordinator Advice and Education Service, at the Office of the Public Advocate will talk about resources developed by OPA to assist people with disability and disability advocates to understand and use the new powers of Attorney law.

Robyn Gaile, Coordinator of DARU, will demonstrate two new resources that will promote and enhance the work of disability advocacy.

Michael Cromie, Manager Strategic Engagement, DHHS Office for Disability will provide an update from the Office for Disability 

Thu 22nd Oct, 2015: 11:15am - 4:00pm, Melbourne
Register online
More information
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