Copy
Winter Newsletter 2016
View this email in your browser
Swan logoSWAN Australia

T: 0404 280 441   E: info@swanaus.com.au
W: www.swanaus.com.au
PRESIDENT'S GREETING
Hi Everyone,

It is hard to believe it has been 2 months since we recognised Undiagnosed Children's Awareness Day (UCAD). A big thank you to everyone who assisted with and attended the day, it was once again a huge success and we would very much like to see it celebrated in other states with events next year. If you would like to assist with organising an UCAD event in your state next year then please let me know so we can assist you.

Last week I met with Greens MP Colleen Hartland who was inspirational in teaching me how to lobby government. We now have to wait for the timing to be right before I can put it into practice! 

We have had a few unwell SWAN children in hospital of late, so I wanted to wish them a speedy recovery. If you are in hospital for an extended period of time and would like a visit from one of our committee then please let me know. We usually bring food and we are always up for a cuppa!

I hope everyone's kids are keeping well as we head into the colder months. 

Take care


Heather Renton (SWAN President)                

DIARY DATES
June 2016
Friday, 3 June 2016 - SWAN Post Mother's Day Mingle
The Fox Hotel - 351 Wellington St, Collingwood, Victoria @ 7.00pm

July 2016
NDIS presentation - date and venue to be confirmed

August 2016
Zebra Fish Lab tour - date to be confirmed
Monash University

SWAN Dad's Group - date to be confirmed.
Please contact Tim McMahon on 0415 287 637 if you are a SWAN Dad who has not previously been contacted. 
SWAN POST MOTHER'S DAY MINGLE EVENING
We have organised a SWAN Post Mother’s Day Mingle for Friday, 3 June 2016 @ 7.00pm at The Fox Hotel: 351 Wellington St, Collingwood (Corner of Wellington Street & Alexandra Parade). The table is booked under the name of SWAN.

It is a great opportunity to mingle with other SWAN Mums so if you would like to join us, please RSVP to Heather at 
president@swanaus.com.au or text 0404 280 441 by Wednesday 1 June.

Please note though, that dinner and drinks are at your own expense. 
COMMUNITY CHOICE RAFFLE TICKETS
SWAN is participating in the 2016 People's Choice Community Lottery. Tickets are available via hard copy ticket books or online. If you would like to sell some raffle books to raise money for SWAN Australia then please let Heather know - T: 0404 280 441 or E: president@swanaus.com.au Tickets can also be purchased online at https://www.peopleschoicecu.com.au/community-lottery-home/organisations/syndromes-without-a-name-swan-australia/
Tickets cost $2.00 each and SWAN gets to keep the full ticket price of every ticket sold. There are some great prizes with over 150 prizes to be won.

Thanks in advance for supporting our fundraising event
NDIS ROLL OUT
The NDIS has announced the roll out of the full scheme progressively in most states from July 2016. The SWAN Committee has been attending a number of workshops so if you have any questions, please contact SWAN. We also have an NDIS  presentation we can email you.
VARIETY GRANTS
Variety's Smile Program
Variety's Smile Program provides responsive financial and practical assistance and facilitating access to information, resources and services for the families and carers of children affected by a rare disease or condition. There are two grants available in this category, one for Medical Support and one for Case Management Service. More details can be found here.

Variety's Smile Medical Support Grant provides assistance to families with a child who has a rare disease or condition, to purchase minor items and services relating to their child's healthcare, over a 12 month period. Through this program Variety provides grants of $1,000 for expenses relating to medical appointments, healthcare items, therapy, respite care, parking and fuel, and can be applied for once every 12 months.

The Case Management Service provides the service of a Case Manager for families affected by rare diseases and conditions. Variety's Smile Case Manager will be available to support families affected by rare disease, helping to find support networks and assistance (including financial, emotional and physical support).
More info here.

Variety's Caring for Kids Program
Through our Caring for Kids Program, Variety helps parents care for their sick children at home by providing financial support for medical items and equipment. More info here.

Variety's Future Kids Program
Through our Future Kids Program, Variety helps children realise their potential by providing financial support and scholarships for education and communication needs.
More info here.
GENETICS ALLIANCE AUSTRALIA SURVEY
Genetic Alliance Australia (GA) invites you to be involved in a project which is the first of its kind in Australia.

The project launched by GA is called “Australian patients and families’ perspectives on genome sequencing”. The aim of the project is to produce an “Australian Patient Charter on Genome Sequencing”. This will outline the views and opinions of patients and families regarding genome sequencing in the healthcare system. This will become an important reference guideline for policy and decision-makers when incorporating genome sequencing into the Australian healthcare system.

The project will involve an anonymous online survey for individuals and families affected by genetic conditions, and aims to gather their views and opinions on the use of genome sequencing in a clinical setting. The online survey was launched on 6thMay 2016 and will run for approximately two months. By participating in the survey you will have access to a video “Whole Genome Sequencing & You” which will serve as an excellent education resource for our families. For more information and to participate in the survey, please click here.
BEING A PARENT AND BECOMING A CHIEF
By Cathy Love 

As an occupational therapist I have worked with thousands of parents, yes I have been busy for decades and have seen much change. I adore my work and continue to learn a fortune listening to parent’s stories, joys and challenges. I am also a professionally trained coach, so my work is a bit different nowadays. I believe that I can nearly always achieve more for children with disabilities by working with their mums and dads than I can by providing therapy to the child. An interesting discussion topic, but I see parents needing to be way more informed, managerial and assertive than ever before. Such ‘parenting on steroids’, as one dad described to me, will be the way of the NDIA future and a skill set that not all embrace with comfort and confidence. But it can be done.
 
Experience and parent conversation suggest that it is helpful for parents to
  • Get connected with others and stay informed
  • Stay super organised with paperwork, time and tasks and use technology to the max
  • Own their information and share it wisely and with consent
  • Set goals they want their child to work towards
  • Understand the systems and services
  • Recruit and manage the strongest team possible around their child
  • Insist on team wide communications, measurement of progress and accountability
  • Celebrate progress wildly
  • Look after themselves as well as they can
To serve this belief I wrote a book.
‘Becoming Chief, how to lead your child’s special needs tribe’ has been described as an essential guide to empower parents. It sits on the shoulders of the awesome parents I have worked with. It is written in an energetic coaching voice to encourage parents to politely step forward, rightfully claim their expert role and lead their child’s team towards positive outcomes. It is full of parent wisdom and practical tips. It is an easy read and use, there are notes pages for scribbling, ideas and actions.

SWAN has one copy to give away as a lucky draw prize at our upcoming Post Mother's Day Mingle Evening, Friday 3 June.

If you would like to find out more about "Becoming a Chief" then please contact Cathy E: 
Cathy@nacre.com.au. http://www.nacre.com.au/my-book/  Books retail at $24.95 with free postage Australia wide.
Ed's Note: Thanks for sharing your expertise with us Cathy.
            
Copyright © 2016 Syndromes Without A Name (SWAN) Australia . All rights reserved.
Our mailing address is: SWAN Australia, PO Box 390, Fairfield, VIC 3078
unsubscribe from this list   update subscription preferences