BITS 'N PIECES
A MONTHLY E-NEWSLETTER FROM THE GENETIC SUPPORT NETWORK OF VICTORIA
DECEMBER 2021 NEWS AND UPDATES: P2 MESSAGE FROM OUR CEO P3 RARE DISEASE DAY - SAVE THE DATE P4 INTERNATIONAL NEWS P5-9 GRANTS & FUNDING P10 GOOD NEWS STORIES:AUSDOCC P11-12 GOOD NEWS STORIES:SMA AUSTRALIA P13-14 GOOD NEWS STORIES: MITO FOUNDATION P15-16 GOOD NEWS STORIES:USHERKIDS AUSTRALIA P17-19 GOOD NEWS STORIES: MACKENZIES MISSION P20 GOOD NEWS STORIES: SSPA AUSTRALIA P21 GOOD NEWS STORIES: PCD AUSTRALIA P22-24 VOLUNTEER PROFILES & GSNV ANNOUNCEMENTS P26-31
COMMUNITY MESSAGES
A MESSAGE FROM MONICA FERRIE CEO And so we farewell 2021 and move on to 2022. What a year! It’s been challenging for us as individuals, for the community and for support organisations. I am delighted to share some good news stories from support groups in this edition of Bits and Pieces and also to share some sad news and some exciting news. Firstly the sad news, the GSNV will close out 2021 having said goodbye to Keri in October and now we will be saying Au Revoir to Kari. Kari will be leaving us mid-February to travel home to the USA for the first time in almost 3 years and then on to Germany to begin a new adventure. We are blessed that Kari will be able to continue to work with us from Germany as a contractor and we want to share our gratitude and thanks for the years that she has served our community here. It is exciting that we will welcome new GSNV team members in the new year and look forward to introducing them to you as we complete our recruitment.
We are also excited about our Rare Disease Day event, to be partnering with Melbourne Genomics in 2022 to update our living library and so much more. We will be reaching out in February to let you know some more but it is wonderful to be bringing our community and Melbourne Genomics together.Our Year in Review will be our Bits and Pieces in January and our next newsletter will be with you in February. Finally, a reminder to take some time for you and enjoy your loved ones over the holiday season. We all, at the GSNV, wish you a peaceful and joyful Christmas and a New Year where you feel ready for the coming year, with all it will bring. Know that we are looking forward to sharing a year of advances, of positive change, of sharing and growing with you all.
Warm regards, Monica
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Volunteer Profile INTRODUCING MARCELLA HANNA
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Please share this survey within your networks as we are keen to get abroad spectrum of input into our future database from Healthcare professionals and researchers'
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GENOMICS IN SCHOOLS EDUCATING THE NEXT GENERATION
THE GSNV IS EXCITED TO BRING EXTENDED LIVED EXPERIENCE OF GENOMICS INTO VICTORIAN HIGH SCHOOLS AND TO RAISE THE AWARENESS OF NEW AND EMERGING TECHNOLOGIES IN HEALTH AND SOCIETY.
PLEASE SHARE WITHIN YOUR NETWORKS BY DIRECTING THEM TO HTTP://WWW.THEGENETICLINK.ORG.AU/EDUCATORS
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Are you a parent of a child with a developmental and epileptic encephalopathy or genetic epilepsy? Then we want to hear from you! We’re working with @The Royal Children's Hospital, Melbourne, @Genetic Epilepsy Team Australia - GETA, @Murdoch Children's Research Institute - MCRI and @Australian Genomics to find out more about your experiences of caring for a child with complex needs. Your feedback will help us advocate for an improved Australian healthcare system, and for a greater understanding of rare and genetic epilepsies. Complete the survey by following the link HERE:
https://redcap.mcri.edu.au/surveys/?s=JERLRTNMFE
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WHAT IS THE JOIN US REGISTER?
JOIN US IS A SIMPLE ONLINE REGISTER THAT HELPS RESEARCHERS PREVENT, TREAT AND FIND CURES FOR DISEASE. FOR YOU, YOUR FAMILY, YOUR NEIGHBOURS AND FOR EVERYONE. JOIN US TODAY. HTTPS://WWW.JOINUS.ORG.AU/
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