BITS 'N PIECES A MONTHLY E NEWSLETTER FROM THE GENETIC SUPPORT NETWORK OF VICTORIA A MESSAGE FROM THE GSNV CEO. 1 COMMUNITY EVENTS AND RESOURCES. 2-8 GSNV PRACTICAL WELLNESS MONTH. 9-13 GSNV PROGRAMS. 14-21 CONTACT US. 22 AUGUST 2022 NEWS AND UPDATES:
We are currently planning our wellness month activities, to bring a wellbeing spotlight into our lives. Please be in touch if you would like us to cover particular topics or with your thoughts on what would be of most value to you.
Welcome to Bits and Pieces. August is always an interesting month, it feels like the turning point to the end of the year and brings with it a time to reflect on what’s been done and what’s yet to be done. I think I’ve said before that it starts a time for me when I have to be really disciplined about closing out the year and not planning for the next year. I’m excited about 2023, but it’s a bit early to be focussed on that! The final four months of the year will find the GSNV focussed on completing our work plan, although we did revise our plan and what we wanted to achieve given the intrusion again of COVID 19 on the best laid plans. We are again working from home and managing family and our own cases of COVID as well. The uncertainty is tiring and its easy to be deflated as plans have to change. We will continue to be agile and flexible for however long it takes.
I’d also like to acknowledge the amazing work of our volunteers and students who are working with support organisations on a whole range of projects and delivering high quality outputs and outcomes. The
We remain conscious that the current environment is even more difficult, on so many levels for families and parents and it’s likely to stay that way for a while. Connecting with friends and support networks can feel like its even harder now because we’ve doing it for a while, always remember we are here and you are not alone.
A MESSAGE FROM MONICA FERRIE, CEO 01
GSNV has a number of students and volunteers working with us right now and we’ll feature their work in our next Bits and Pieces. Stay safe and well Monica
Our life-saving research wouldn't be possible without the valuable contributions of research participants. We've partnered with JoinUsRegister to encourage more Australians to sign up to be matched with medical & health research. Learn more & register at https://www.joinus.org.au/ THE JOIN US
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03 You don’t need to be an expert to have an R U OK? conversation. Listening and giving someone your time might be just what they need to help them through. Ask R U OK? No qualifications needed. Your genuine support can make a difference. Learn more at ruok.org.au R U OK? DAY (THURSDAY 8 SEPTEMBER)
04 The conference focuses upon increased awareness among all stakeholders about the disease, and data collection for national surveillance database. Wesley Conference Center 220 Pitt St, Sydney Register Here THE 2ND AUSTRALIAN SICKLE CELL SCIENTIFIC CONFERENCE: 10TH SEPTEMBER 2022
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A strategic plan for a non profit organisation can be like a treasure map of hope – helping you to keep focus on what you want to achieve in the future. It helps you to take stock of where your organisation is now, what you have done well, and the new things you have learnt that work to keep your organisation moving toward your goals. This live and interactive session will help you to prepare for your planning process and create a framework for your next strategic plan. Here
Register
FREE WEBINAR ON HOW TO PREPARE FOR YOUR NEXT STRATEGIC PLAN: 2 SEPTEMBER 2022
06 The Health Technology Assessment (HTA) Consumer Consultative Committee (CCC) is hosting a symposium titled “Conversations for Change” for health consumers and health consumer and patient organisations with an interest in HTA. This free, virtual event will be held: Tuesday 18 October: 1.30pm –5.30pm (AEST), and Wednesday 19 October: 10.30am – 2.30pm (AEST) If you would like to be added to the mailing list for this event, please email HTAconsumerengagement@health.gov.au
Rare Connect is helping individuals that are looking for others living with the same rare disease that have posted their call in the General Discussion community or asked us to help in finding others. Generally, these are ultra-rare diseases and/or there's no support group for them that we know of (pictured below). If you have any information or know others affected by these conditions, please let them know here.
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08 Healthy Trajectories, our campus Child and Youth Disability Research Hub, has partnered with CanChild, Kids Brain Health Network and McMaster University to deliver their Continuing Education Family Engagement in Research (FER) Course. The course runs from September 19th – November 27th, with four live online sessions on either Wednesdays or Thursdays from 9:30-11:30am (AEST). Apply for the course here. For further information about the course content, please email: fer@mcmaster.ca FAMILY ENGAGEMENT IN RESEARCH COURSE
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The GSNV has recently onboarded 38 new volunteers and now has a pool of over 45 individuals keen to support organisations and groups working with genetic, rare, undiagnosed diseases. Our new volunteers come with a multitude of skills and attributes from data and analytics to social media and communications and all are studying in the field of genetics. If you are keen for some additional support, please send through your information and details of the support required to Sammy.bowden@vcgs.org.au 14 NEW GSNV VOLUNTEERS READY FOR ACTION!
This free program provides a Telehealth nurse who can provide information and links to practical supports for the genetic, undiagnosed and rare communities within Australia. For more information and to book a time to talk with her, please click here and complete the online booking form. 15 PATIENT PATHWAYS PROGRAM
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These resources have a point of difference by developing an understanding of the ‘lived experience’ of genomic medicine and the key message of the potential of personal empowerment in health and wellbeing decision making. This program is designed to complement interdisciplinary studies, including study design from science, biology and humanities. Download resources
JOIN OUR DATABASE: SELF-NOMINATION FORMS
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JOIN HERE as a provider, health professional or patient support group
The purpose of the databases is to facilitate communication with healthcare providers, connecting with others, and providing newly diagnosed families a place to start. Our mission is to make it easier to find relevant support groups and rare disease professionals, including information and resources about rare diseases. Developed with consumers from the community including health professionals and those with lived experience of a rare disease, the vast majority of contributors agreed that they believed it would be beneficial for health care professionals and individuals with lived experience to have access to such a database and that it would help promote awareness of conditions, link healthcare professionals with support groups where they could provide information and support and contribute to a more holistic approach to healthcare.
The GSNV is always happy to promote the events of genetic support groups! If you would like your event to be added to the GSNV events calendar, promoted on our socials and/or put in our monthly newsletter that goes out to our subscribers and members please fill out the following fields at this link: SUBMIT YOUR EVENT 18
GSNV FUNDING SUPPORT TEAM
The GSNV in partnership with some amazing volunteers, has established a Grants Support Team to provide guidance, support and assistance to support groups in applying for funding applications to better support their group and community. If your support group requires assistance with writing a funding submission, pulling data to support an application or simply needs some guidance in how to draft an application, please contact our volunteer pool via the Grants Support Team email GSNVGrants@gmail.com.
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The GSNV Margaret Sahhar Grant has been established to assist a support group with a significant boost allowing them to serve their communities by delivering on a pressing need or deliver an important benefit. In the spirit of Margaret Sahhar, we encourage collaboration, holistic approaches, short and long term benefit and consideration and evaluation. DGR Status is not required for GSNV Small Grants. Look out for more information in the next few months!
MARGARET SAHHAR GRANT 2022 - GET READY TO APPLY!
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By choosing to make a donation to the GSNV, you will be supporting people living with genetic, undiagnosed and rare conditions and those who support them, including families and support groups, working with health professionals, social service supports, and the broader community to deliver outcomes where people can flourish and live their best lives. HERE SUPPORT THE GENETIC SUPPORT NETWORK OF VICTORIA
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We are responsive to a fast changing complex environment; we recognise the importance of, and seek to facilitate, a broad consumer voice in genetic health. We acknowledge the gap in existing support for many rare, undiagnosed and genetic conditions and continue to work to bridge this gap through education, advocacy and support.
CONTACT US BECOME A MEMBER
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