UsherKids Australia in Melbourne, Victoria, Australia | Community organisation

UsherKids Australia

Locality: Melbourne, Victoria, Australia

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25.01.2022 Today marked the official end to our Genomics in Practice student placement. This is the third year UsherKids Australia has been selected to host Master of Genetic Counselling students from The University of Melbourne to allow future genetic counsellors an understanding of the role of support organisations and other health services in the provision of genetic health care. The students also learn the broader context of how health and social issues faced by individuals and families with a history of a genetic condition can impact on a person. This year we had four wonderfully talented and energetic students assist us with two projects, and this morning we got to listen to them present their learnings to their fellow students and university staff. It is always such a joy and and a privilege to be involved.

24.01.2022 Not exactly the conference we hoped for, but pretty happy with the virtual webinar series we have put together for our global USH community this week. Day 1

24.01.2022 Just over 3 weeks until our USHER IN FOCUS webinar series! - https://mailchi.mp//registration-open-for-our-usher-in-foc

22.01.2022 We need your help! The Usher Syndrome Society ("USH Society") is looking for participants for an upcoming video journalism campaign to raise public awareness fo...r Usher syndrome. If you or someone you know is interested in being a part of Sense Stories: an exploration of USH through video journalism sign up using the link below. USH Society is a non-profit organization that uses the arts, educational events, and collaboration to raise awareness and funds for treatments and a cure for Usher syndrome. For more information on USH Society visit: www.ushersyndromesociety.org After the initial sign-up, a selection of contributors will be chosen based on their responses and will be contacted. As this is a public awareness video journalism campaign, we need to keep the video short, and we will be unable to include every entrant. Fill out Form #1 here: https://www.surveymonkey.com/r/USHsociety1 Form #1 deadline is August 7, 2020 If you need support accessing this form please email us at: [email protected] [Image description: An image of a man with a mask on adjusting filming equipment in a room with a bright light shining on a table with two empty chairs.] #UsherSyndrome #USHsociety #ShineALightOnUsherSyndrome

22.01.2022 Hear and Say Usher Syndrome Webinar The Hear and Say Sunset Series brings together professionals from across the medical and allied health sectors, together with families and the community, to network and share knowledge. Usher Syndrome: Types, Treatment and Talking with Clients... Join a live webinar with experts from DeafBlind Australila and UsherKids Australia to learn about supporting adults and children who have Usher syndrome. Topics include: Prevalence in Australia Types and causes The needs of adults and children Living with Usher Syndrome The importance of early identification Communication tips and techniques Support for people who have Usher Syndrome Date: Tuesday, August 18, 2020 Time: 6.00pm 8.00pm (AEST). Includes presentation and Q&A. Cost: Professionals: $65 | Families using NDIS funding: $118 | Students and/or families not using NDIS funding: $45 CPD points: Audiology Australia and AG Bell Academy endorsement currently pending. to register: https://www.hearandsay.com.au//sun/register-sunset-series/

22.01.2022 This afternoon as part of the InFocus Webinars Series we are talking about eye clinics Dr. Sandra Staffieri will cover all the eye testing an Usher patient will under go and the reasons behind them all She will be available for questions with clinician and researcher Prof. Alex Hewitt for a live Q&A from 2:15pm. So please join us ... All sessions will be available on Usherkids Australia.com website this afternoon for those who have registered this afternoon and were not able to attend in real time If youd still like to register please head to www.usherkidsaustralia.com

22.01.2022 At long last! An UsherKids Australia planning meeting face to face! After almost 12 months of Zoom calls due to Covid-19, Hollie and I had the pleasure of meeting today to discuss in person our goals and priorities for UsherKids Australia in 2021. We have everything from collaborations, conferences, workshops, webinars, grants, projects, research and more on the agenda. We can't to share everything with our growing Usher community.

21.01.2022 Just about to begin Day 3 of our USHER IN FOCUS Webinar Series and this morning you hear from Hollie and I about the Pathway to Primary School from a Parent Perspective. All sessions are available on our website, so its not too late to register!

20.01.2022 A beautiful story from Hannah Corderman on her hopes and fears living with Usher syndrome Usher Syndrome Society

20.01.2022 On Day 2 of our USHER IN FOCUS Webinar Series on Tuesday 15th September we will be covering Usher Clinical Guidelines. Associate Professor Valerie Sung will be opening the day with her presentation on Childhood Hearing Loss Investigation Guidelines and Genetic Testing. Join us by registering at www.usherkidsaustralia.com

20.01.2022 Check out our Usher Syndrome fact sheet - a great resource to share with anyone working with a child with Usher syndrome which explains the basics of the condition. https://usherkidsaustralia.com//09/UsherSyndromeHandout.pdf

19.01.2022 Here is a beautiful story of Joseph Formosa, a visual artist and young adult living with Usher syndrome. https://www.abc.net.au//deafblind-artist-joseph-/12587092

19.01.2022 Here is a nice article about the needs of children with vision impairment in the classroom. https://www.ideas.org.au/bl/vision-impairment-students.html

18.01.2022 On Day 3 of our USHER IN FOCUS Webinar Series, it is our turn to share our knowledge during our Pathways to Primary School presentation from the parent perspective. Hollie and I have made different decisions along the way in terms of early intervention and primary school choice based on the individual needs of our families. Exploring the options is a great way to make informed decisions about what is best for your family. Join us live and take part in the Q&A session, or watch in your time over the next 12 months. For more details, visit our website www.usherkidsaustralia.com

18.01.2022 USHER IN FOCUS DAY 5 : LIVED EXPERIENCES Our final day of live webinars Friday 18th Sept and we hear from two ladies living with Usher syndrome Maggie is in her final year of High School and will chat to us about how she manages day to day with her diagnosis and how she advocates for accomodations within school and life to help her thrive... Molly Watt is a key note speaker and joins us from the UK where she has a vibrant career as an accessibility consultant We have the pleasure of hosting Maggie live in the Q & A session starting at 10:30am. The afternoon session starting at 1:30pm concludes the week with information about the National Disability Insurance Scheme (NDIS) in relation to an Usher child and get your questions answered live on our Q & A with a representative from the NDIA from 2pm

18.01.2022 We had the privilege of meeting Karen Wolffe when she was visiting Australia early this year presenting to a range of organisations supporting children with vision impairment. Her messages to families certainly resonated with us, and we are delighted to have Karen join us to present "Social Skills Support for Children with Usher Syndrome" to finish off Day 3 of our USHER IN FOCUS Webinar Series. Fore more details and to register, head to www.usherkidsaustralia.com

18.01.2022 The USHER IN FOCUS online webinar series will take place from 14th-18th September 2020 in conjunction with celebrations for International Usher Syndrome Awareness Day on September 19th. In the afternoon session on Day 1, Professor Alex Hewitt from the Centre for Eye Research Australia will discuss the Genetics of Usher Syndrome & Australian Research Efforts. In his presentation, Professor Hewitt will present the very latest on clinical research being undertaken in various r...esearch laboratories in Australia addressing strategies to slow or halt the progression of retinitis pigmentosa, the eye disease associated with Usher syndrome. He will explore the importance of genetic testing and tracking the natural progression of the disease and how these contribute to research efforts. Professor Hewitt will explain the medical interventions designed to correct the mutation or error in the Usher syndrome-causing gene as well as discuss the stages in research including preclinical studies and clinical trials, with timelines to give the audience a realistic overview of the advancements of research. For more details, visit www.usherkidsaustralia.com

17.01.2022 After making the difficult decision to postpone our UsherKids Australia Transitions Sydney Conference until September 2021 due to the current public health advice, we are pleased to announce our online webinar series will take place from 14th-18th September 2020 in conjunction with celebrations for International Usher Syndrome Awareness Day on September 19th. The webinars will include the latest updates on global clinical research efforts, clinical guidelines, how to suppor...t your Usher syndrome student in the classroom and more. You will have the option to join us live and participate in Q&A sessions, or access the recordings to watch in your own time. With a range of Australian and International leaders in support for children with Usher syndrome joining us to present, we believe this will be a must for families and health care professionals caring for children with Usher syndrome in Australia. The final program will be available at the end of July, and online registrations will then be open to parents, carers, Audiologists, Speech Pathologists, Genetic Counsellors, Orthoptists, Orientation & Mobility Specialists, education staff including Teachers of the Deaf and Teachers of the Vision Impaired, and anyone with an interest in improving the support for children with Usher syndrome in Australia. In the meantime, if you have any questions please email us at [email protected] For our full newsletter, please go to https://mailchi.mp/ffabcb5/conference-announcement-and-more

17.01.2022 As our little community grows we want to be able to share with newly diagnosed families the joys of living with an UsherKid and anecdotes of how normal and not so normal life can be - but certainly about the promise of bringing up fulfilled children . We have an idea to create a resource that will eventually become a hard copy book filled with gorgeous photos of your kids and families to celebrate all their achievements. Alongside the photos will be short quotes & stories ...based on interviews from you as the families and kids. Our purpose with this resource is to: Provide families with simple information on Usher syndrome Provide families with comfort in seeing that others have travelled this path before Connect families who are on this journey Celebrate the uniqueness of each child and family Empower families to share their own stories Provide clinicians with understanding on the experience of living with Usher syndrome We will be contacting you all to ask if you would like to give permission to be part of this project with us As all your kids are at different ages and stages we hope many of you will take part and support future families by sharing some of your own journeys. We are calling this our Lived Experience Project and you can be part of it anonymously if that sits more comfortably with you . So look out in your inboxes shortly for more information on this exciting project Emily and I are dreaming of making a reality . Inspired by Kate Disher-Quill's book EARSHOT: A PHOTOGRAPHIC COLLECTION OF STORIES ON DEAFNESS AND HEARING LOSS

16.01.2022 On this day 7 years ago, a small article in the Herald Sun newspaper set off a chain of events that lead to what our organisation is today. In 2013, just weeks after 3 year old Louis was diagnosed with Usher syndrome, a family friend thought he would try and lift our spirits by taking transport-obsessed Louis on an Ambulance Victoria "heliwocker". The Herald Sun ran a story and which was read by a family of a young boy with cochlear implants who was experiencing the same bal...ance problems just a few suburbs away. They began investigating the cause of his hearing loss, and some 6 months later received the news that their boy too had Usher syndrome. The two families met and later that year, travelled to the Usher Syndrome Symposium hosted by Usher Syndrome Coalition in Boston. They came back determined to improve the information and support for families of children with Usher syndrome in Australia, and UsherKids Australia was established. Today, we are as determined as ever to provide information and support to our families, and our upcoming USHER IN FOCUS Webinar Series is testament to that. During 14th-18th September 2020, we will host a range of Australian and International leaders who will present a range of topics including the latest updates on clinical research efforts, clinical guidelines, how to support your Usher syndrome student in the classroom and more. The content of these webinars has been developed in conjunction with a variety of Continuing Professional Development (CPD) programs including Audiology Australia, Australasian Society of Genetic Counsellors - ASGC, SPEVI - South Pacific Educators in Vision Impairment Inc, Speech Pathology Australia and more. For more details about our organisation or our USHER IN FOCUS Webinar Series, please visit www.usherkidsaustralia.com.

15.01.2022 Check out our educational video about considerations for students with Usher syndrome in the classroom. A timely reminder as our Usher kids return to the classroom for 2021! https://www.youtube.com/watch

14.01.2022 Before I launched my website, I felt so nervous to raise awareness about Usher Syndrome and I said to myself am I making the right decision to tell people about... it? And then I realised it is important to raise awareness about any type of disability to educate people in society and reduce stigma. Disability awareness breaks the barriers and the challenges that can prevent people living with disabilities from going about their daily lives especially with social, workplace and education. #connectwithqais www.connectwithqais.com To stay updated, follow me on Instagram @connectwithqais

14.01.2022 Great news from the Children's Medical Research Institute this week with the investment for CRISPR gene therapy research into Usher syndrome 2A. Natalie Mitchell says that every day since her three-year-old daughter was diagnosed with Usher 2A has involved constant grieving’’. Zarah has already experienced hearing loss and they are preparing her for vision loss. We know what is going to happen, but it's all a waiting game as we don't know when or how it will affect our daug...hter, as each case is different. Research is extremely important to our family. Without it we may never have found out what Usher Syndrome is or what type our daughter has. Knowing what she has through research and genetic testing has helped us by preparing for and bettering her future. Investing in research not only gives those with Usher Syndrome hope, but it also gives hope to their families and loved ones. There are so many researchers who dedicate their life’s work to finding cures so people of all ages can have the best quality of life possible. We can only hope this will be the case for our family and many others in our situation.’’

14.01.2022 Our first newsletter for the year is now available to read through our website. It includes some important information such as school readiness, Orthoptics Australia announcement, our Annual Report 2019-2020 and more! https://usherkidsaustralia.com/news-research/newsletter/

13.01.2022 Less than one week to go until our USHER IN FOCUS Webinar Series begins! Our presentation by Carly Fredericks and Pamela Aasen from Ava's Voice, both parents of children with Usher syndrome and professionals in the field of Deafblindness will conclude Day 4 of our Webinar Series on Thursday 17th September 2020. Pam and Carly provide us with an enormous amount of recourses for both parents and professionals on how best to collaborate to ensure the best outcomes for youth with... Usher syndrome in the school setting. From early advocacy skills, mentoring and getting to know others with Usher syndrome, this presentation is a must for those working in the education space. For more details, go to our website www.usherkidsaustralia.com.

12.01.2022 Australian Genomics are running a research project to understand the effect of COVID-19 crisis on the quality of life of parents with children affected by genetic conditions . COVID-19 has generated unprecedented uncertainty with severe consequences. There are many avenues through which COVID-19 is likely to have impacted on families. Concerns about the risk of contracting COVID from carers may have limited access to respite and other allied health services. Loss of conne...ction from peer support may have further endorsed feelings of anxiety and isolation. This survey will help us understand how the pandemic has affected your life. The survey will take about 10 minutes to complete. Initially, the survey asks some questions about you and your child. The survey then asks some questions about which areas of your life or your child’s condition have been affected. You will then be asked to complete a validated measure of quality of life. Please be generous with your time & share your thoughts- these research projects help to provide qualitative data that can be used as evidence . A summary of the survey findings will be placed on the Australian Genomics and the University of Melbourne websites. We will also be sharing the results of the survey more widely via academic journals and conferences, and through the development of a briefing to distribute to patient advocacy groups, policy makers, and health providers. Researchers : Dr Ilias Goranitis (Responsible Researcher); & Dr Stephanie Best; SURVEY LINK :https://redcap.mcri.edu.au/surveys/?s=YKY3C9HWD4 For more information you can contact the researchers directly [email protected] , [email protected]

12.01.2022 Its one thing not being able to present face to face when running a conference and we are now all seasoned Zoom webinar attendees, but for for those organising, this online platform presented as an opportunity to add International speakers across 5 time zones and a whole week of content with live Q & A every day. Add another level as the presenters as separated as well. It was very ambitious of us.. but with the organisational skills of @shep_em in slightly less glamorous se...ttings from our previous conference we have successfully accomplished 4 out of 5 days content of our #usherkidsaustralia USHER IN FOCUS Webinar Series. Today we focused on Supporting the Whole Family and our speakers included Assoc Genetic Counsellor Robin Forbes who was actually our genetic counsellor, 6 years ago. She talked about how younger forget the day you are given genetic diagnosis and how right she is. Her perspective on the importance of a genetic counsellor for the mental health of the whole family unit, married with the talk by Helen Bourke-Taylor on supporting the mental and physical health of mothers of children with a disability ,is a conversation that can go forever. Volunteering alongside Emily Shepard to educate and connect families of children diagnosed with Usher syndrome and their support services gives us both so much joy when we hear our content is helping to change the outcomes for our USH community. We have so many ideas for future webinars so keep watching. Hollie Feller #advocate #support #ushersyndrome #raredisease #geneticcounselling #covidstyle

12.01.2022 We are working with Hearing Australia on an updated version of CHOICES - an information resource for families. Share some of your story in 200-300 words by 31 July 2020. We are looking for a wide variety of experiences, reflections and ideas to share with families following in your footsteps.... Some ideas that might get your story started... If you could go back in time and give yourself some advice about what is to come, what would it be? Any information you think might be useful for other families Tips and tricks you have learnt along the way How did you look after yourself? Some of the nitty gritty: Your stories will be edited and returned to you for final approval before publication Images would be wonderful You will need to sign a consent form before your story and/or images are included in the resource. It is important that there is a wide variety of experiences and choices included in the resource, so we cannot guarantee that your story will be published. Your contributions can be anonymous. We can change names and places so your child and family aren't easily identified. If you would prefer to speak to someone rather than write, we can arrange a call. For more information please contact: Emily Shepard - [email protected] Fleur Henderson - [email protected] Ann Porter - [email protected] Aussie Deaf Kids https://www.aussiedeafkids.org.au/share-your-story

11.01.2022 We are thrilled to share with you our educational resource on eye clinic assessments for children with Usher syndrome. This video was produced as part of the Deafness Foundation grant initiative. https://youtu.be/L7JxNCAIEGo

11.01.2022 Dr Sandra Staffieri joins us for the afternoon session on Day 2 of our USHER IN FOCUS Webinar Series - Usher Clinical Guidelines. Sandra gives an overview of ocular anatomy before detailing the paediatric eye examinations involved in the clinical care of children with retinitis pigmentosa, the eye condition associated with Usher syndrome. With her wealth of experience, Sandra presents strategies for clinicians and parents to get the best out of appointment days. ... A must for our friends at Audiology Australia and Australian College of Audiology, with continuing professional development accreditation for members. More details available at www.usherkidsaustralia.com

11.01.2022 Parents and carers often put their children's needs first and say they will look after themselves when everyone else is okay. But Dr Claire Burton, a senior cli...nical psychologist at The Royal Children's Hospital, Melbourne and honorary with the Murdoch Children's Research Institute Population Health Team, explains that parents also need to prioritise their own mental health. Here she proves tips to help parents cope with major stressors like COVID-19. https://www.mcri.edu.au//parental-wellbeing-during-covid-1

10.01.2022 Presenting on the 5th and final day of our USHER IN FOCUS Webinar Series is world renowned accessibility key note speaker, Molly Watt from the Molly Watt Trust - Registered Charity Number 1154853 in the UK. It is such a privilege to have Molly join us, and one of the silver linings of being forced to meet virtually due to the postponement of our Sydney conference until 2021 because of COVID-19 restrictions. Molly shares both the ups and downs of her journey with us, and what ...has lead her to use her voice to advocate for positive change in accessibility for all people living with disability across the world. It is not too late to register now and join in on all the action from Monday 14th September at 9:30am Melbourne time, or if you'd prefer, and can access all the recordings and watch in your own time. More details available on our website www.usherkidsaustralia.com

10.01.2022 MASSIVE EDUCATION NEWS: Victorian Government has announced $1.6 billion under the Disability Inclusion package to support students with disability. Double t...he number of students to receive extra support in a classroom to more than 55,000. Strengths-based assessment of students who need individual funding. Facilitators to help schools and families identify the tailored support that meet the needs of the student. School-based support for students who have not met previous criteria for individual funding. This includes further focus and support for students with learning disabilities, ADHD and dyslexia. Training and coaching to increase the capacity of teachers to meet the needs of students with disability.

09.01.2022 Did you know there is a lot more to Orientation & Mobility than guide dogs and white canes? Although both play an important role, there are many skills that we can help young children with Usher syndrome develop while they still have good vision to best prepare them for some of the challenges ahead, well before the need for a white cane is introduced. Dr Brownen Scott is passionate about providing children with low vision with the skills they need for growing independence and joins us to share her wealth of experience in the area of Orientation & Mobility. For more details, visit our website www.usherkidsaustralia.com

08.01.2022 The program is now available and registrations are open! We are pleased to announce our USHER IN FOCUS online webinar series will take place from 14th-18th September 2020 in conjunction with celebrations for International Usher Syndrome Awareness Day on September 19th. The webinars include the latest updates on global clinical research efforts, clinical guidelines, how to support your Usher syndrome student in the classroom and more. You will have the option to join live a...nd participate in Q&A sessions, or access the recordings to watch in your own time. https://usherkidsaustralia.com//UsherKids-Australia-USHER-

08.01.2022 We are please to share the updated online resource from Hearing Australia Choices, a guide to services and supports for families with children newly diagnosed with deafness or hearing loss. It has been described by parents as a security blanket and in the past became a trusted source of information and guidance on the pathways for children diagnosed with deafness and hearing loss in Australia. This updated version represents the changing landscape of the diagnosis and commu...nication options available for families, and includes detailed information on various topics including genetic testing, NDIS and best practice in early intervention. The parent stories remain the heart and soul of the resource, highlighting the various paths that can be taken. They really allow families new to the world of deafness and hearing loss to breathe a little easier knowing they are not alone and that the future is bright for their children. https://www.hearing.com.au//NSO_1467-Choices-Publication_E

06.01.2022 Association for Children with a Disability (ACD Vic) are hosting some free workshops to assist with getting the most out of your Student Support Group meetings for those with children accessing Program for Students with Disabilities funding in Victoria. See below link for more details.

06.01.2022 The look on her face

04.01.2022 On Friday 18th September our USHER IN FOCUS Webinar Series changes pace and gives a different view to Usher syndrome. Maggie is currently completing Year 12 and will provide her lived experience of growing up with Usher syndrome Type 1. Her open and honest account of the trials and tribulations of having a dual sensory loss in the education system provides both families of young children and those working in education, valuable insight into the day to day changes that can ...be made to accommodate students. Maggie shares with us how meeting Molly Watt in her early teens was the first step in accepting her Usher diagnoses, and now, just a few years later she is presenting along side Molly at a webinar. Through her schooling, Maggie has found her passion for sport, and is now training for a place in the Australian Paralympic team for Tokyo next year. This truly is a remarkable story not to be missed. Join us by visiting our website www.usherkidsaustralia.com

03.01.2022 DAY 2 of our Usher In Focus Webinar series Join Prof. Valerie Sung amd Dr. Fiona Barker in a session on Clinical Guidelines - Valerie will be available in our live Q & A session to respond to your questions For more information on the speakers and to register for yesterdays recordings head to our website www. Usherkidsaustralia.com

03.01.2022 Our Fighting Blindness community members are sharing their personal perspectives on having a retinal disease. They are all true beacons of strength, champions of courage, and advocates for the Foundation's mission of finding treatments and cures for their diseases.

02.01.2022 DAY 3: USHER IN FOCUS . Todays topic is Early Supports for Usher children, with Emily and Hollie talking through the parents perspective from the first hearing diagnosis to transition to adulthood. Our second speaker is Orientation and Mobility specialist Bronwen Scott. The live Q & A will start at 10:30am so join us with your questions

02.01.2022 For our friends in WA. An opportunity not to be missed!

01.01.2022 Did you know that the mental health and well being of parents of a child with a disability are well below that of parents of children without disability? Additionally, the parent is less likely to cope with the additional care responsibilities of a child with a disability if their own mental health care needs are not being met. Associate Professor Helen Bourke-Taylor has developed "Health Mothers Health Families", an evidence-based health promotion program aimed at reducing ...the health disparities found in mothers of children with a disability. Join us for this insightful presentation during the USHER IN FOCUS Webinar Series to learn strategies to better equip our mothers of children with disability to do the one thing they struggle to do -take care of themselves. For more information and to register, head to www.usherkidsaustralia.com.

01.01.2022 Our story with SBS The Feed in 2017 has been viewed nearly 44,000 times! That's 44,000 people that know about Usher syndrome that may never have otherwise. The power of awareness is ever lasting.

01.01.2022 Professor Margaret Kenna truly is an Usher champion. As a leading Otolaryngologist at Boston Childrens Hospital, she performed a routine cochlear implant surgery for a two year old some years ago. That patient went on to be diagnosed with Usher syndrome as an 8 year old. Together with the father of the patient, she was a co-founder and board member of the Usher Syndrome Coalition. She knows everything there is to know about Usher syndrome and we are excited for Margaret (M...arley) Kenna to be opening our UsherKids Australia USHER IN FOCUS Webinar Series on Monday 14th September to give us the Usher basics. Registrations are now open!! Visit www.usherkidsaustralia.com for more details.

01.01.2022 USHER IN FOCUS : Tomorrow is DAY 4 : SUPPORTING THE WHOLE FAMILY UNIT We will have a change of speaker order on Thursday 17th Sept and the day will start with Associate Professor Helen Bourke- Taylor from Monash University, talking about the wellbeing of parents "Healthy Mothers , Healthy Families ". Helen is followed by Associate Genetic Counsellor Robin Forbes from Royal Melbourne Children's Hospital We have the pleasure of hosting both live in the Q & A session starting ...at 10:30am . We look forward to you joining us tomorrow All the previous sessions & resource lists are available on view from our website with your unique log in from registration Haven't registered yet? - You still can www.usherkidsaustralia.com

01.01.2022 All registrants of our USHER IN FOCUS Webinar Series have access to the amazing virtual exhibit. It is a power display of the connectedness of our global Usher community. Register now and have access to all our amazing presentations to watch and enjoy in your own time www.usherkidsaustralia.com

01.01.2022 Lanya McKittrick, Usher Syndrome Coalition Chair and Krista Vasi, Usher Syndrome Coalition Executive Director will join us on our first day of our USHER IN FOCUS Webinar Series to cover some Usher Basics around the importance of registries and how you can be involved in our growing global Usher community. They have also generously committed to a live Q&A session after their presentation, even though the time-zone difference isn't that friendly! Register now at www.usherkidsaustralia.com!!

01.01.2022 All the presentations from our recent USHER IN FOCUS Webinar Series are now available on our website. Here is just a snippet of the overwhelmingly positive feedback so far...... To register, visit www.usherkidsaustralia.com

01.01.2022 Some news for all our peeps in Victoria (but everyone else please check it out too) ... The NDIS have updated their website this afternoon and released a new in...formation pack for families of school aged children with disability. The pack confirms that families can use their funds for additional support at home while schools and services are closed. It provides some suggestions and case studies about how families can use existing funds in different ways to support their child during lockdown. We know not everyone's funds will stretch that far. In that case the only option is to seek a review (yep ... we know). And while this pack is intended for families with children, a lot of the info is very relevant for all NDIS participants - regardless of their age. So it's worth checking out. You can find the info pack here - https://www.ndis.gov.au/coronavirus/information-packs We have also heard that more info will be released early next week - so stay tuned. We will let you know when it lands. And just in case you missed anything, we are constantly updating our website with all the latest info for Victorians - https://everyaustraliancounts.com.au/new-coronavirus-rules/ This is a really tough time. Please look after yourselves - and others. (Image description: The front cover of the NDIS information pack. The front cover is purple with white text. The text reads: "NDIS COVID19 Information Pack. Victoria: Information for families and carers of school aged NDIS participants)

01.01.2022 As we continue to explore the individual presentations included in our upcoming USHER IN FOCUS Webinar Series on Monday 14th September-Friday 18th September, we wanted to remind everyone that if you are unable to join the webinars live, you will be able to access the presentation recordings on our website shortly after the conclusion of each session, along with a full transcript, presentation slides, as well any resources supplied by the presenters. For your convenience, al...l presentations include captions and Auslan interpretation, and will be available for you to access over the next 12 months. On Day 2 of our Webinar Series, Dr Fiona Barker joins us from the UK to discuss vestibular dysfunction in children with Usher syndrome type 1. Vestibular dysfunction can be difficult to understand and manage without a proper assessment and diagnosis. The early signs can often be mistakenly attributed to other conditions, making therapy less effective. Dr Fiona Barker clearly explains the vestibular system and strategies to ensure children with Usher syndrome reach their gross motor goals safely and effectively - with a little fun along the way. This session is not to be missed! More details on our website www.usherkidsaustralia.com