ausDoCC CONNECTS advocating. uniting. supporting

What’s Inside

• Messages from the Committee

• Upcoming Events

• Feature Article

• Source kids

SPRING 2016 Newsletter

www.ausdocc.org.au

Presidents MessageHi all,

I hope that the beginning of Spring finds you all well, and the seasonal allergies

are not too debilitating.

As you will see in the newsletter the AusDoCC committee have been very busy

recently. In the coming months we have a major fundraising event to help fund

our kids club at the conference. Linda is arranging a get together in NSW, and

we have our AGM and our annual committee face to face meeting.

With plenty of more plans on the horizon, this is where you come in. Yes, the

committee appreciate every single member we have.

What we would ask from our members is to spread the word of our fundraising

events, encourage family and friends to become members and to actively

participate in our get togethers. Giving our brochures to your local health care

provider also helps to spread awareness of not only the disorder but of our

organisation so that no one needs to feel alone.

Our facebook groups have provided much needed support and information for

many years and is well moderated to ensure the privacy of our members. We

encourage you all to ask those questions that you may have about development

and behaviours.

We are always open to feedback and suggestions and welcome your input. So

please do not hesitate to contact the committee via facebook or on our email

info@ausdocc.org.au

Tanya Smith

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CONFERENCE UPDATE

CONNECTIONS 2017

May 6 & 7

****7 MONTHS to go****

Registrations are now open.

The program is still under construction but we are excited to announce Professors Linda Richards and Elliott Sherr, A/Professors Mark Walterfang, Simone Mandelstam, Rick Leventer and Doctors Lynn Paul and Warren Brown to present. Cost for the full weekend program including food -

ADULTS – AusDoCC members - $220 per person, - non members - $250 per person

KIDS/TEENS – ages 3-17 – $150 per person

For further information and details on how to book, visit; www.ausdocc.org.au/events/connections-2017/

ACCOMMODATION: – is available to book at discounted rates directly with the hotel. For booking accommodation visit; www.rydges.com/private-page/ausdocc-inc/ or call – 03 9347 7811 and be sure to mention you will be there for the AusDoCC conference. Thanks. Maree (Connections 2017, Program Officer)

COMMITTEE MEMBERS

● TANYA SMITH

o President

o NSW

● KRISTINA COBURN

o Vice President

o WA

● MAREE MAXFIELD

o Secretary

o Vic

● REBECCA WALTER

o Treasurer

o SA

● LINDA FRANKLIN

o Membership

o NSW

● NIKI HARRISON

o Fundraising

o Vic

● MELO KALEMKERIDIS

o Sponsorship

o NSW

● MELISSA BOWDEN

o Legal Support

o New Zealand

● ABBIE KINNIBURGH

o Adult Support

o Vic

● MICHAEL SHANAHAN

o Adult Support

o QLD

● ANNA UTHER

o Adult Support

o NSW

● JANIS BARIC

o General

Member

o WA

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MEMBERSHIPS

Some MEMBERSHIPS expired on June 30, renewals can be renewed by visiting the website. Memberships are a low $20 per person for families. We all thank you for your current membership and hope that you will continue to support AusDoCC as a financial member to keep receiving newsletters, a discount for the conference next year and other benefits. 100% of your membership enables us to support those living with a disorder of the corpus callosum.

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FUNDRAISING

We have placed a few donation boxes in business places around the country,

if you know of a business that would be happy to place one on their counter

please get in touch.

THE AUSDOCC SHOP

We are proud to announce the opening of the AusDoCC shop. The shop has

various items for sale and new things will be added all the time, make sure

you keep an eye on it.

www.ausdocc.org.au/shop

UPCOMING

EVENTS

New South Wales –

Victoria – Trivia Night

22nd October

Queensland –

Western Australia –

South Australia –

New Zealand –

Check the Facebook

page or the website for

further details.

EVENTS WILL ALSO BE EMAILED

TO ALL

MEMBERS

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FEATURE ARTICLE Article by – Prof Linda Richards

New finding shows that genes related to autism cause heightened tactile sensation that impacts social behaviour and anxiety

Scientists at Harvard University, USA*, have taken genes that are associated with autism and Rett syndrome (Mecp2, Gabrb3, Shank, Fmr1) and deleted them specifically in either the brain only or only in the sensory nerves of mice. The paper shows that mice with the genes deleted in the brain are relatively normal. However, mice with the genes deleted in the peripheral, sensory nerves, display heightened tactile sensitivity to gentle touch, but also behavioural changes in sociability and anxiety. Interestingly, these changes are also only evident when the genes are deleted during development but not when they are deleted in adult mice. Deleting these genes in peripheral mechanosensory nerves decreases inhibition of the nerves’ firing leading to increased activity going to the brain. The findings show the important contribution of peripheral sensory input to behaviours such as social interaction and anxiety in mouse models of human developmental disorders. This paper provides a link between heightened sensation, often perceived by people with ACC or autism, and changes in behaviour such as social difficulties and anxiety, often experienced by people with ACC and autism. This link could be just a correlation or it could mean that heightened sensation during early childhood could impact the brains wiring leading to behavioural difficulties throughout life. This is an outstanding study and opens potential new avenues for therapeutic treatment of these disorders, for example by finding ways to decrease sensation to normal levels during early childhood in affected individuals. *Article reference: Orefice LL., Zimmerman AL., Chirila AM., Sleboda SJ, Head JP., Ginty DD. (2016) Peripheral mechanosensory neuron dysfunction underlies tactile and behavioural deficits in mouse models of ASDs. Cell, 166, 1-15.

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Source Kids is Australia's first (and only) magazine and online media resource for parents, carers and

professionals of children with special needs.

Source Kids was founded two years ago by special needs parent Emma Price, who was frustrated by

her own experiences trying to find products, services and information for her daughter Charlotte, who

has Angelman Syndrome.

The vision was to deliver reliable, relevant and up-to-date information in a vibrant and positive

manner.

Source Kids provides information about a range of topics including, education, health, rare diseases,

research, technology, grants and funding, products and services and events to name a few.

This information is distributed through a range of channels including:

Glossy magazine that is distributed quarterly through five states

Online through the Source Kids' website

Email newsletter

Social media (Facebook, Instagram, Twitter, Pinterest)

Source Kids distributes its quarterly magazine for free to over 100 outlets in Australia including therapy

centres, children's hospitals, development schools and other selected businesses relevant to its

audience.

The need for a resource like Source Kids has been amplified by the rollout of the National Disability

Insurance Scheme (NDIS). This new empowerment is a great outcome for many families, but also a

daunting one as they encounter new processes to be learned, the need to manage their own

services and also find and purchase their own products. Source Kids is leading its audience through

this process and holding their hand along the way.

The impact of Source Kids is far-reaching and making a difference to the lives of so many.

Empowering its parents, carers and people with disabilities with the opportunity to share their story,

opinions, grief, advice and celebrations.

To read Source Kids magazine online, subscribe to be the first to receive a copy straight to your

mailbox, sign up to receive email newsletters or follow Source Kids on social media, head over to

www.sourcekids.com.au

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DONATIONS -

AusDoCC is registered charity with Deductible Gift Recipient (DGR) endorsement. This means that donations made to ausDoCC are tax deductible.

Where does the money go — produce information brochures for families,

doctors and teachers support scientific and clinical DCC research

programs connect socially isolated individuals with a

DCC support and unite families increase distribution of essential medical

and educational information form a collaborative of Australian bodies of

professionals to advise us on DCC write an Australian picture storybook about

DCC plan a national conference for 2017

attend conferences and training on advocacy, disability and peer support

become involved with international peak DCC bodies

hold social and information events for families

hold regular national committee meetings maintain an up to date, informative website establish a research scholarship for DCC

research maintain insurance to cover our activities

and events increase societal awareness of DCC create a national corpus callosum awareness

day on July 2.

CONTACT DETAILS

EMAIL : info@ausdocc.org.au

POSTAL ADDRESS:

PO Box 533, ALTONA, Vic, 3018

For more information about ausDoCC

visit www.ausdocc.org.au

Facebook support group - https://www.facebook.com/groups/ausdocc

Facebook support groups ADULTS –

https://www.facebook.com/groups/355338714574689/?fref=ts

Facebook page - https://www.facebook.com/AusDoccInc

ACN 15 88 26 147 ABN 54 754 767 674 Reg. Org A0057821R