TSAA Newsletter Issue 17 Summer Edition

Issue : 17

Summer Edition 2023/24

NEWSLETTER www.tourette.org.au Tourette Syndrome Association of Australia Inc

Whats Inside New Committe for 2024 Expo News New Initiatives And so much more The Tourette Syndrome Association of Australia acknowledges the Traditional Custodians of Country throughout Australia and their connections to land, sea and community. We pay respect to their elders past, present and emerging and extend that respect to all Aboriginal and Torres Strait Islander peoples today, fostering a shared sense of belonging through understanding and inclusion for all people.

We are committed to providing services and activities that are safe for all children, where child abuse and harm are not tolerated. Child safety is a priority for the TSAA and the prevention and reporting of abuse is supported and encouraged. All staff, volunteers and contractors are responsible for promoting the safety, wellbeing and empowerment of children. All children who seek support from the TSAA have a right to feel and be safe. The TSAA recognises that discrimination can harm children and we treat all children with dignity and respect.

www.reallygreatsite.com © TSAA Newsletter – Issue 17 Summer 2023/24 Read More

Summer Edition 2023/24

Content

Executive Committee Members: President: Mandy Maysey Vice President: Elisa de Groot Treasurer: Gareth Livingston Secretary: Scott Milne General Committee Members: Conor Maysey Sophie Stack Leah O’Rourke Shannon Newman Haze Elford River Night

Office Coordinator: Misook Pelzman National Support Group Coordinator: Rebecca Brackin Newsletter Editor: Belinda Milne

President’s Report 03 Meet the Committee 04 Disability Expos News 2024 06 2023 Annual Conference recordings 07 Campaign for a diagnostic 09 framework and treatment pathways 11 NDIS changes 13 National Autism Strategy 13 International day of people with 13 disability 2023 16 Mardi Gras 2024 17 Fundraising 20 National Camp Program 21 Volunteers 24 Support groups 25 Awareness Week 2024 27 Treasurers Report 28 Useful contacts 29

The opinions expressed in this newsletter are not necessarily those of the Tourette Syndrome Association of Australia Inc. Do we have your current email address?

TSAA sends newsletters and notifications of events via email.

To ensure you do not miss out on the latest information.

Email: info@tourette.org.au to update your details.

(02) 9382 3726

© TSAA Newsletter – Issue 17 Summer 2023/24

info@tourette.org.au

PO Box 1173, Maroubra, NSW, Australia,

PRESIDENTS REPORT

Summer Edition 2023/24

Welcome to the new committee members and looking forward to 2024 We are thrilled to bring you news of the new 2024 committee for Tourette Syndrome Association of Australia following the AGM. Firstly, we would like to extend a warm welcome to our new members who have joined us following the AGM. We are excited to have you on board and can't wait to see what we can achieve together. Much of last year was spent improving access to our services, enhancing our communication channels, and working hard to streamline our operations, ensuring that we are making the most of our resources.

This has included developing new policies and procedures, as well as implementing new technology and a new website to help us work more efficiently.

Of course, none of this would have been possible without the hard work and dedication of our outgoing committee members from 2023, Grant Crough, Sandra Gleeson and Matt Glynn. We are grateful for your commitment to the Tourette Syndrome community and for giving so much of yourselves to ensure the TSAA continues to be a valued support for our members.

As we look forward to the year ahead, we are focusing on a number of key initiatives to help us better serve our community and focus on what's really important...our members. This year our aim is to create stronger links with other TS organisations around the world and cultivate relationships with businesses, specialists and government departments. Hopefully, 2024 will bring some much-needed grants/funding our way to ensure we can really make a meaningful impact on the lives of our members.

We’d like to thank you, the TSAA members for your ongoing support, and we hope you enjoy this newsletter. If you have any feedback or suggestions, please don't hesitate to get in touch.

2024 Committee as Voted for at AGM on 12th October 2023 Executive Committee President - Mandy Maysey Vice President - Elisa de Groot Treasurer - Gareth Livingston Secretary - Scott Milne General Committee Conor Maysey Sophie Stack Leah O’Rourke Shannon Newman Haze Elford River Night Mandy Maysey

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

Name: Scott Milne, Executive Committee Member (Secretary) State: Australian Capital Territory Day Job: Principle Consultant with an International Firm What made you get involved with TSAA/makes you passionate about Tourette Syndrome? My wife and two children have TS and contributing is important for me.

Describe yourself in 3 words: Resilient, Patient, Caring If you had a motto what would it be? Life is complex If money were no object and you could help the TSAA achieve anything, what would it be?

Support people with TS to find their tribe to support each other and attend camps accessible to all. To build a network of support groups and resources locally.

·

Have services available to support individuals with TS from all age groups, carers, and families.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

Make good information freely available for people with TS, their families, medical and allied health, teachers, and the community. At diagnosis, have a national kit available with information, support options, local contact information, and resources.

Build a quality Advocacy service to support people who need assistance when they need it.

Build a Research Centre of excellence to find the cause of Tourette Syndrome and comorbidities.

To explore the links between autoimmune diseases like Juvenile Idiopathic Arthritis, Diabetes, and other autoimmune issues.

Have much better training about TS, comorbidities and neurodiversity for GPs, medical specialists (psychiatrists, paediatricians), allied health (psychologists, social workers, etc.), teachers, emergency first responders, and awareness in the general community.

Build and engage with the network of organisations and services locally, nationally and internationally around TS and comorbidities.

Reward and acknowledge the volunteers who are the backbone on the Association.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

EXPO NEWS Developing Australian Communities (DAC) Disability Expos 2024 “Our NDIS Provider & Participant Expos are dedicated to decreasing confusion and increasing the level of connection between Service Providers, Carers and Participants” The dates for the DAC Expos around the country in 2024 are:

1st & 2nd March - Brisbane 24th & 25th May - Sydney 16th & 17th August - Perth 18th - 19th October - Melbourne The event runs from 10a.m. - 4p.m. each day plus set up on the first day and pack up on the last day.

We require at least two people each day to run our stand. You will be talking about Tourette Syndrome and TSAA to the general public, people with disabilities and to service providers. It is a great opportunity to network and to educate those working in the disability field.

All volunteers are required to complete the TSAA training module, be a current member and have a current Working with Children/Working with Vulnerable people card (or equivalent) for the state. they are volunteering in.

If you are able to assist or would like further information please email info@tourette.org.au so that we can confirm our attendance at each of these events.

If you’d like to attend an expo but are unable to, for the first time ever, DAC has gone virtual:#DACVIRTUALEXPO MAKE CONNECTIONS. FIND SOLUTIONS. DAC make it easier at the first ever Australia-wide Disability Connection Virtual Expo for those living with a disability to connect with the “right” service providers. Start your journey to find solutions that offer you real CHOICE and CONTROL, go to :- https://dacexpo.vfairs.com CONNECT WITH PROVIDERS The virtual expo has expert providers on hand to consult, guide and offer you solutions to those nagging NDIS questions, to help you navigate the complex maze that is the NDIS and to enable you to source products and services you not only need, but probably didn’t realise you needed!

These virtual exhibitors from throughout Australia cover a wide range of NDIS topics, including exhibitors specialising in accommodation and life choices to assistive technology and the all-rounders!

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

Annual Conference 19th August 2023 9 am - 5 pm AEST Speakers:

Details:

9.00am - Mandy Maysey TSAA President 9.15am - Rosita Sunna Vice-President of Tics and Tourette Across the Globe (TTAG) “Tourette Syndrome: A Global Perspective”

Date: Saturday, 19th August, 2023 Time: 9 am - 5 pm AEST

Location: Virtual, hosted on Zoom Register: ViaTrybookinglink: www.trybooking.com/CJZPK

10.00am - James Sayers TSAA Ambassador

LivedExperience: Surviving & Thriving

11.00am - Professor Perminder Sachdev AM, MBBS, MD, FRANZCP, PhD, MFPOA, FAAHMS Neuropsychiatrist

Cost: Members - Free Non Members - $15

“What is new in the understanding and treatment of Tourette Syndrome?”

11.45am - Dr Philip Mosley with Chris Wright (Participant) FRANZCP MA (Oxon.) BMBCh (Oxon.)

Psychiatrist

MedicinalCannabis–WesleyResearch Institute 12.15pm - Dr Shekeeb Mohammad MB BS, FRACP, PhD Paediatric Neurologist

"TS: Genetics & Comorbidities 1.15pm - Lunch Break 2.00pm - Dr Melissa Licari Dr, BSc PhD W Aust Senior Research Fellow

“TelethonKids:TouretteSyndrome Impact Study” 3.00pm - Dr. Amy Talbot BA Hons (Psyc), DClinPsy, MSc Clinical Psychologist

"NeurodivergenceandEating&Feeding Disorder 3.45pm - Dr. Amy Talbot BA Hons (Psyc), DClinPsy, MSc Clinical Psychologist

"Empowered for Advocacy"

We heard about the latest findings in medical, community and social support for TS The TSAA holds an Annual National Conference each year to disseminate the latest findings in medical, community and social support for Tourette Syndrome.

These events are a rare opportunity to hear from specialist speakers, access hard-to-come-by resources and share experiences with other families and friends affected by Tourette Syndrome.

Conference recordings of all speakers can be found on the link below.

https://tourette.org.au/TSAA-Conference-2023 Do you have ideas for the 2024 Conference? Let us know.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

Conference recordings of all speakers can be found on the link below. https://tourette.org.au/TSAA-Conference-2023 (02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

Campaign for a Diagnostic Framework and Treatment Pathways Tic the to-do list - Together we can make a change Despite its prevalence, TS remains widely misunderstood by the medical community, leading to delayed or inaccurate diagnoses and inadequate treatment options. It is essential to address these gaps by establishing a standardised diagnostic framework and treatment pathway for TS in Australia.

This comprehensive approach will facilitate early identification and intervention and ensure that individuals with TS receive the appropriate support and care.

Please connect to Tourette Syndrome Association of Australia Inc. - Join Our Campaign (tsaa.org.au) to join our campaign by letting your local federal Member of Parliament and Senator know how vital funding a TS diagnostic framework and treatment pathway is.

Gaps in services and awareness From time to time, we may come across gaps in services, myths or misunderstandings; please let your association know and inform members of parliament so that we can improve services for TS and comorbidities.

We have included some examples of how your association works to address issues.

ISSUE

TSAA RESPONSE

TS remains widely misunderstood by the medical community.

The difficult road for diagnosis for many.

The campaign for a Diagnostic framework and treatment pathway for TS in Australia.

Lists for members of medical professionals who are aware of TS. Supporting medical education initiatives.

Advocacy.

Lack of first responder awareness of TS.

First responder awareness campaigns.

Advocacy.

Lack of community awareness of TS.

TS awareness campaigns.

TS numbered Card. ‘Just to let you know I have Tourette Syndrome’.

TS awareness week and activities.

Partnerships with like-minded associations Participation in Disability Expos

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

TSAA RESPONSE

ISSUE

TSAA Web page includes information for: Understanding TS. Newly Diagnosed.

Parents and Families.

Adults with TS. Adolescents & Young Adults.

Events and upcoming events.

Resources including Contacts for: *Health *Disability Services *Learning *Families and Carers *Employment *Legal

Lack of information in one place.

Information for support Medical Professionals.

First Responders.

Free resources to download.

Links to access relevant books.

Newly Diagnosed information on the web page.

Talks, resources, books, information.

Mentors.

New diagnosis information vacuum.

Support groups.

Camps.

Meet-up opportunities.

Newsletter.

Teens and Young Adults Private Facebook Group.

Mardi Gras.

Annual Conference.

Feeling Isolated.

Opportunities to volunteer and be involved.

Need to build networking and support.

The TSAA Website contains opportunities to be involved in Research as they are available.

Lack of linkages to research.

Links to other TS Associations around the world.

Travel support.

Lack of information in different languages.

(02) 9382 3726

Resources in different languages on our resource web page: Chinese, Arabic, Vietnamese.

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

These are some of the initiatives your Association has developed with the support of our volunteers, committee and office holders over 35 years.

Of course, having TS can be a complex journey for some and sometimes requires complex responses to difficult issues. The TSAA will do what it can to make that journey simpler together.

Together we can make a difference.

NATIONAL DISABILITY INSURANCE SCHEME CHANGES

The NDIS has been hit or miss for people with Tourette Syndrome who need support. For those on the more disabling end of the spectrum with more severe TS and co-morbidities, many have found it difficult to access the NDIS, whilst others have NDIS plans. The focus on diagnosis has been problematic.

When the NDIS started, it heralded a new era in disability support. Many of the changes that followed were positive, however there have been glaring issues. The complexity of disability and the flexibility envisaged to meet individual needs could not be well grasped by an inflexible rule-based bureaucratic system. Many state/territory services were cut or diminished; there was an exodus of state/territory service staff to the private sector, and gaps opened up. Some people were on the NDIS, whilst others with similar needs and issues were not considered eligible. People on the NDIS were often met by inconsistent advice about how their own goals could be met through the NDIS. Different criteria for support across the NDIS, medical and education systems increased complexity and there was little connectivity.

On the 7th of December 2023 the final report was released of the Independent NDIS Review (the Review). The report included 26 recommendations and 139 supporting actions.

The independent NDIS Review Panel travelled to every state and territory – including regional and remote communities – heard directly from more than 10,000 Australians, worked with disability organisations to reach out and listened to more than 1,000 people with disability and their families, recorded more than 2,000 personal stories, and received almost 4,000 submissions.

As an initial response to key aspects of the report, the Australian Government and states and territories committed to reforming the NDIS to make disability supports fairer for all Australians.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

National Cabinet also agreed to design additional Foundational Supports together to be jointly commissioned by the Commonwealth and the states/territories.

The full Government response to the Review will be released in 2024. Discussions with the disability community will continue over the coming months to make the changes to the NDIS. The Review’s recommendations included: Legislation: The Review recommended a range of legislative reforms to return the scheme to its original intent and improve the experience of participants. This included legislation to improve eligibility and access, as well as an early intervention pathway for children.

Foundational supports: The Review recommended disability-specific supports that would be available to people with disability and, where appropriate, their families and carers. The Review said these supports should be available to all Australians with a disability, whether they are on the NDIS or not.

Foundational supports would interconnect with existing mainstream services like childcare and schools.

Early childhood intervention: The Review said there is not enough support for children in everyday settings where they live, play and learn. It recommends children with disability and developmental concerns or delays are identified early, and get the support they need. This could include earlier checks and screening to pick up developmental concerns and provide support.

New approaches to psychosocial disability and mental health: The Review recommended a new, dedicated approach for people with psychosocial disability that better meets their episodic needs and is focused on personal recovery. It recommended that access to mental health services should be improved and there should be a strengthened interface between mental health systems and the NDIS. Service navigation: The Review recommended the introduction of navigators to help people with disability, find and access all services available to them across mainstream services, community supports, foundational supports and the NDIS. Fairer housing and living support: The Review recommended consistency should be introduced to housing and living support budgets to make it fairer for NDIS participants. The Review recommended a more flexible and innovative approach to housing supports to help people access solutions that suit them better.

Registration: The Review recommended all providers should be enrolled or registered, with the level of regulatory requirement being determined by the risk and complexity of the different supports they provide.

The Minister for the NDIS and Government Services, Bill Shorten said, “The Albanese Government has made a commitment to humanise the Scheme and ensure every dollar goes to the participants for who it was intended.”

“It is important that Australians understand changes are not going to happen overnight and any reforms adopted by the Albanese Government will be developed with the disability community to ensure a better NDIS.” Access the full report and the supporting documents here.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

National Autism Strategy For some people, Tourette Syndrome may include having a diagnosis of Autism Spectrum.

The Commonwealth Department of Social Services has acknowledged the invaluable contribution of many people and groups as part of the consultations for the development of the National Autism Strategy.

From 4 September to mid-November 2023, more than 2,000 people shared their thoughts and ideas on what should be included in the National Autism Strategy. This included people with Autism Spectrum and their families, carers, kin, advocates, researchers and other stakeholders.

The information captured through these engagement activities has been used to prepare a draft National Autism Strategy that is expected to be tested with the community in early 2024.

This timing will give the sector and broader community an opportunity to consider the draft Strategy and provide feedback. Please look out for this if it is relevant for you and make a contribution.

International Day of People with Disability 2023 https://www.idpwd.com.au/

As we are aware, Tourette Syndrome is a spectrum, and it impacts different people differently and at different times. It can have different phases and can wax and wane. Some of us will consider TS a disability, and others who don’t. For those who do, the International Day of People with Disability (IDPwD) has been held on 3 December each year since 1992. The day's purpose is to promote community awareness, understanding and acceptance of people with disability.

In Australia, IDPwD is a joint effort between community groups, organisations, government, schools, businesses and individuals. The Australian Government, through the Department of Social Services, funds a national program and this website to help promote and raise awareness of the day.

The IDPwD program aligns with Australia’s Disability Strategy 2021-31 and aims to increase public awareness, understanding and acceptance of people with disability.

Learn more about IDPwD Each year the UN announces a theme for IDPwD. The theme provides a focus on how society can strive for inclusivity by removing barriers for people with disability. The 2023 theme was ‘ United in action to rescue and achieve the Sustainable Development Goals (SDGs) for, with and by persons with disabilities.’

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

The International Day of People with Disability (IDPwD) International day of persons with disabilities (who.int) is part of the United Nations Disability Inclusion Strategy.

International Year of Disabled Persons 1981 In 1976, the United Nations General Assembly proclaimed 1981 as the International Year of Disabled Persons. It called for a plan of action at the National, regional and International levels, emphasising equalisation of opportunities, rehabilitation and prevention of disabilities. The theme of the International Year of Disabled Persons was "Full Participation and Equality", defined as the right of persons with disabilities to take part fully in the life and development of their societies, enjoy living conditions equal to those of other citizens, and have an equal share in improved conditions resulting from socio-economic development.

1981 was a turning point in the history of the Australian and international disability rights movements. I remember that for the first time the media and people in the community were talking about disability.

They were discussing access to public transport, to shops, to educational institutions, and inclusion. The celebration of IYDP across Australia in literally hundreds of events organised by all levels of government and by community groups, activists and organisations brought people with disability together on a scale and with a focus that had not previously occurred. The first Australian Handicapped Persons Conference was held in early 1982. We have come a very long way since then, and there remains a very long way to go.

United Nations Decade of Disabled Persons 1983–1992 The decade was declared to provide a time frame during which Governments and Organisations could implement the activities recommended in the World Programme of Action, the General Assembly proclaimed 1983–1992 the United Nations Decade of Disabled Persons. The TSAA was formed in the middle of that decade in 1989.

The Australian Government has been supporting IDPwD since 1996, and it is celebrated annually on December 3rd. The event was renamed International Day of People with Disability (IDPwD) in 1997 by Australian community representatives to place a greater emphasis on the abilities and achievements of people living with disability.

People with all kinds of disability aren’t the problem – we’re the solution.

There have been many models used to understand disability over time. The Social Model of Disability can help understand how far society has come.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

Social model of disability According to the social model, ‘disability’ is socially constructed, it is attitudes, customs and ideas that may be a problem.

The social model of disability contrasts with what is called the medical model of disability.

The medical model of ‘disability’ is a health condition dealt with by medical professionals. People with disability are thought to be different to ‘what is normal’ or abnormal. ‘Disability’ is seen ‘to be a problem of the individual. Medical support and allied health assistance can be important, but they should not define who we are. People with disability are seen as in need of being fixed or cured. From this point of view, disability is a tragedy and people with disability are to be pitied. The medical model of disability is all about what a person cannot do and cannot be.

The social model sees ‘disability’ as the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others.

A social model perspective does not deny the reality of impairment nor its impact on the individual.

However, it does challenge the physical, attitudes, communication and social environment to accommodate impairment as an expected product of human diversity. We are all different and need to support each other's differences.

Scott Milne Secretary TSAA

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

https://tourette.org.au/event-5417655

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

Fundraising Dear TSAA Community We are thrilled to report the outstanding success of our recent sausage sizzle fundraiser, held on Saturday, October 14th and raising a total of $838.30.

The event was a shining example of how every small effort can collectively make a significant impact in supporting the Tourette Syndrome Association of Australia(TSAA).

The day was marked by vibrant energy, enthusiastic volunteers, and an overwhelming show of support from our community. Here’s a recap of the highlights that made this fundraiser a resounding success: 1. Community Spirit: It was heartwarming to see members of our community coming together, ready to contribute their time and resources to a cause close to our hearts. The camaraderie and unity displayed were truly remarkable.

2. Delicious Food: Of course, the star of the day was the sizzling sausages, perfectly cooked by our dedicated volunteers. The mouthwatering aroma and savoury flavors attracted a steady stream of supporters who relished every bite.

3. Generous Donations: People not only enjoyed a delightful meal but also showed their generosity by making donations that will directly benefit the TSAA. Every dollar raised during the event will play a crucial role in furthering our mission.

4. Awareness and Education: In addition to fundraising, the event served as an opportunity to raise awareness about Tourette Syndrome. Education is a vital part of our mission, and events like these help us reach a wider audience to promote understanding and acceptance.

5. Strong Partnerships: We extend our gratitude to the local IGA supermarket that supported our fundraiser. Their contributions, whether in the form of supplies or promotion, made a significant difference in the success of the event.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

At the heart of this success is the recognition that every little bit counts. The funds raised will enable the TSAA to continue its invaluable work, providing resources, support, and assistance to individuals and families affected by Tourette Syndrome. With your ongoing support, we can make a substantial impact on the lives of those who need it most.

Now, we call upon each member of our community to jump on board and help us continue our fundraising efforts. Whether it’s participating in future events, volunteering your time, or making a financial contribution, every contribution, no matter how small, is invaluable.

Remember, it’s not just about the sausage sizzle; it’s about the warmth of our community, the strength of our collective efforts, and the difference we can make together. Let’s continue to stand together, united in our mission to support those with Tourette Syndrome.

If you’d like to organise a fundraiser of your own, or need a little help to get started, please email us at fundraising@tourette.org.au (if this email address is not ready by newsletter please use info@tourette.org.au) Thank you for your unwavering support and dedication.

Sincerely, Sophie Stack Committee Member

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

TSAA Fundraising Working Group

Are you skilled in generating innovative ideas and implementing them effectively? Do you possess a deep passion for the TSAA and aspire to contribute to fundraising efforts for a commendable cause? If so, we invite you to join us!

We are currently assembling a Fundraising Group that aims to operate on a national scale, reaching far and wide across the country. To accomplish this, we are seeking a couple of representatives from each state who will become part of a designated working group, tasked with organising fundraisers within their respective regions.

If you are interested in becoming a part of this endeavour, we kindly request that you contact us at info@tourette.org.au and provide some information about yourself and what region you’re from. Additionally, please share your motivations for wanting to be involved in this extraordinary group!

We eagerly anticipate initiating a series of captivating events that will both raise funds and foster awareness. Let us embark on this journey together!

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

Containers for Change - Western Australia & Queensland If you live in Western Australia or Queensland you raise funds for the TSAA by collecting and deposit 10c refund containers with Containers for Change. Most aluminium, glass, plastic, steel, and liquid paperboard drink containers that are 150ml to 3L can be returned to Containers for Change. Just check ffor the 10¢ mark. Use the TSAA's member number or barcode (can be found on the TSAA Fundraising website) when selecting how to receive your refund.

WESTERN AUSTRALIA https://www.containersforchange.com.au/wa/ Member number: C10443780 QUEENSLAND https://www.containersforchange.com.au/qld/ Member number: C11113853

Return & Earn in NSW and Victoria will be set up for members soon.

Paypal Giving Fund You can give to the TSAA through PayPal by donating $1 when you make a purchase through PayPal, or by creating a PayPal fundraiser. There are no fees when you donate in the PayPal app or on the PayPal website, so 100% of your donation goes to supporting the TSAA. You can connect to a PayPal Giving Fund through Facebook and mycause. https://www.paypal.com/AU/fundraiser/charity/3510840

MyGivingCircle MyGivingCircle commits to give away $500,000 in grants to charities, not-for-profits and community groups each year. You can help the TSAA win a grant by voting for us at My Giving Circle. https://mygivingcircle.org/tourette-syndrome-assn-of-australia

mycause You can create a fundraiser for the TSAA through mycause. You can set up a fundraiser through MyCause and select the TSAA as your charity to support.

Once your page is set up all donations are directly deposited into the TSAA’s bank account by mycause and the person who donates receives an automated tax invoice from mycause via email.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

National Camps Program We had completed three wonderful camps up to May with approximately 200 members enjoying the Victorian, Queensland and New South Wales camps.

November was a busy month with both Tasmania and South Australia seeing another 85 people coming together and enjoying all that camp has to offer. Unfortunately Western Australia did not get enough numbers over the line/ With only eight individuals having booked, we could not offer camp this year but truly hope 2024 will see a return of camp in WA. 2024 dates have almost been finalised. Currently we have:Victoria: Philip Island Adventure Resort, 22 - 24th March, 2024 https://tourette.org.au/event-5564982 Queensland: Gold Coast Recreation Centre, 12th - 14th April, 2024 https://tourette.org.au/event-5571950 South Australia: El Shaddai, 26th - 28th July, 2024 (TBC) New South Wales: Tops Conference Centre, 20th - 22nd September, 2024 Western Australia: Point Walter Recreation Centre, 18th - 20th October, 2024 Tasmania: Camp Clayton, 8th - 10th November, 2024 As the association is currently unfunded there will be a cost to camps again in 2024. We do our best to make camps affordable and so continue to subsidise the cost of camps. These costs have been reduced to: Children 13 & Under - $80 Adults and teens 14+: $120 NDIS participants will be charged at the full camp rate of $387. Hopefully if we can get members to take up the fundraising challenge we will be able to reduce the cost of camp in 2024.

Further information including opening dates for bookings will be emailed to all members. Please ensure that you log in and check your membership and email preference details are up to date to ensure you receive these notifications.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

South Australian TSAA Camp review Tourette’s Camp, to me, is a place where I can smile, laugh, and be the most authentic version of myself. The people around me, young and old, understand at the core one of my most important experiences, and that kind of connection is priceless. This years SA camp, was a place for everyone, and Elisa, Cassie, James, and Grant truly made this year’s camp memorable for all. Between bouldering, quiz night, group chats, and everyone’s beloved new activity Gaga Ball, the TSAA team made a camp to suit everyone.

Though our numbers may be smaller than the others, it’s always an unforgettable time being around fellow ticcers, especially for those who are experiencing it for the first time. It was so wonderful getting to know one of our ambassadors and having the opportunity not only to get to know him personally but to watch the impact James had on the young people at camp, who now have a role model who understands them. Speaking personally, as a young adult, I was so grateful for the conversations I was able to have with adults living with TS. It was so important to me to have people who understood not only the Tourette’s experience but also the ups and downs that come with being an adult with a disability.

I gained a lot from speaking to the team of volunteers about their lives and their experiences both having and being around people with TS, and I cannot wait to join them again for camp 2024. Thank you for all the effort put in by our TSAA, and the SA camp volunteers who made this all possible. Our Tourette’s community is forever grateful for you.

Jazmin Edson

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

Tasmanian TSAA Camp Review We've been to every Tas Tourette's Camp since it started, and it has been such a rewarding weekend for our family. Tourettes is such an isolating condition for our son, and it warms my heart seeing him interact with people he knows will understand him without judgement or fear.

This year we had to travel from right down the bottom of the state; an almost-5-hour drive. It was exhausting but so worth it. This year’s camp was organised in a way that allowed for the parents/adults to hang back for discussion sessions while our kids were supervised outside doing amazing activities. I really loved this format, being able to sit with other families who are going through the same things, albeit at different stages of the Tourette’s journey, is so validating. The learning, sharing, and connections we make are well worth the long drive and weekend away. I know my son had an absolute blast; the flying fox and giant swing are ALWAYS highlights!

Jamie and I have made so many wonderful connections through the Tourette’s Camp; connections we would have had no other way of making. We are so grateful that this is available to us and our fellow TS Families. I hope the camps can continue in ways that allow more families to attend.

Thank you so much for facilitating these camps. We are already looking forward to 2024!

Sarah Annesley

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

Thank you to our TSAA volunteers

The TSAA relies on our volunteers, there are so many volunteers who support our organisation in many different ways. If you would like to volunteer, please reach out to a committee member, coordinator, or the office, send an email, or make a phone call. We are only as strong as your contribution.

At next years International Volunteer Day, which has been established to raise awareness of the important role volunteers play in responding to challenges facing the world, we hope you will be one of the TSAA heroes. At the end of September, the TSAA had 40 active volunteers. We rely heavily on our volunteers to provide services and programs to our members and others with tics and TS who need our support. Without our volunteers, we wouldn’t be able to operate. If you think about all that the TSAA does for its community, this is a very big load being carried on the shoulders of a small number of volunteers.

If you know a TSAA volunteer, reach out to thank them. If you were a volunteer please re-engage.

We are working on a package to make volunteering easier by streamlining the processes of volunteering with the TSAA. We are building a package to thank our dedicated volunteers. Along with special recognition for dedicated volunteers, we are working on ways that we can show appreciation in a more structured way.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

Support Group Leaders Support Group Leaders organise regular catchups for TSAA members and their families. Catchups are a great way to provide support for people with TS, helping them to feel less alone and make connections. Support Group Leaders are expected to organise a minimum of four catch-ups per year.

Support Group Leaders may also be contacted by people seeking to find out more about their local support group and if it is something they may benefit from. If this sounds like too much, consider becoming a support mentor instead.

Contact the National Support Group Coordinator if you are interested in volunteering as a support group leader.

Support Mentors A support mentor is an individual who provides guidance, assistance, and emotional support to individuals with Tourette Syndrome (TS). They play a vital role in helping people with TS navigate the challenges and complexities associated with the condition.

A support mentor for someone with Tourette Syndrome serves as a source of understanding and empathy. They may have personal experience with TS themselves or have received specific training to support individuals with the condition.

PEER SUPPORT VOLUNTEERS Use your experience to help others

Contact the National Support Group Coordinator if you are interested in volunteering as a support mentor.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

You're not alone Support Groups

Support groups have been shown to be valuable in assisting people with TS to manage.

Sharing information and strategies can be very good, and of course the acceptance and understanding one can find is a positive thing. Recent research shows that support groups have a beneficial effect on living with TS. The TSAA hold support group events regularly. To find out more contact the TSAA and let us know your location to find the nearest support group to you. Non-members can attend one support group catch-up, to see if it suits them, before becoming a member.

SUPPORT GROUP RULES All persons attending under the age of 18 must be accompanied by a suitable adult.

All those who have previously attended a Support Group Catch Up must be fully paid up, current members of TSAA. Please do not attend if you have flu-like symptoms, have been advised to test, and/or isolate by health authorities, or have been in contact with anyone who has a confirmed case of COVID-19 in the last 14 days.

As per TSAA committee rules : To ensure that members privacy is respected and maintained, filming/videoing meet up attendees other than yourself and your family without consent, is not permitted. Posting or uploading videos of other attendees to social media or other digital platforms is not permitted.

All TSAA support group catch-ups are run in accordance with our Work Health & Safety Policy and Chid Safety & Wellbeing policy. Visitors and members have a responsibility for their own safety and the safety of others.

Most Support Groups will have an associated Facebook Page. These pages are only for TSAA members aged 16 years or older.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

Tourette Syndrome Awareness Week 2024 Raising awareness and focussing on issues in the TS Community 2-8 June 2024 Each year the TSAA holds a National Awareness Week. In the lead up to Awareness week we encourage everyone to do one thing to help spread the message.

Previously held in May, from 2024 the TSAA will run it's Awareness Week campaign in the first week of June to coincide with International Awareness Weeks. Awareness Week 2024 will be held from 2 - 8 June, coinciding with International Touretee Syndrome Awareness day on 7 June.

Ideas to get involved in Awareness Week include: Calling your local radio station and newspaper to include a notice or interview.

Sharing our social media files.

Putting our flyer in the school/work newsletter.

Put up a flyer at your local medical centre, school, workplace notice board or library.

Delivering TSAA brochures to doctors, allied health professionals and other organisations in your community.

Hold a "Wear Teal for Tourettes" awareness day at your school or workplace.

Donate a book on TS to your local or school library.

Hold a BBQ or cake stall at your local hardware store, supermarket or similar location to raise funds (and awareness) for TSAA. Do a talk on TS at your local community group (Rotary, Lions Club, Probus etc).

Contact our office for assistance with brochures, posters or flyers. Awareness week is intended to make us stop, think and understand more about Tourette Syndrome.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Summer Edition 2023/24

Treasurer's Report

By Gareth Livingston

2023 has been a year of transition for the TSAA. With wholesale changes to the committee, there was always expected to be strong challenges facing the association.

The presented financial statements do a lot to demonstrate the work that has been put in by the entire committee to ensure the association can operate effectively and efficiently in the next year. The overall position for the year is a net surplus of $10,655. A change from the prior year loss of $172,557. This is a reflection of the turbulence caused by the Corona Virus Pandemic still impacting the financial from prior years. 2023 was a return to a stable balance sheet and a reduction in expenses.

The revenue side of things have increased significantly from the prior year with total donations more than doubling in the past financial years. this is a testament to the work of all those that fund-raise for the TSAA and I would like to take a moment to appreciate the work that has lead to these increases. We were also able to significantly increase merchandise sales up 500%. This was in response from communication from the community looking to get their hands on merchandise that actually represented who they are. We intend to continue to provide this in the future.

A notable change in this year’s income compared to last is the $0 received from government grants. This has been very disappointing and really doesn’t recognise the work that has been put in by our outgoing secretary, Sandra Gleeson. There have been multiple incredibly detailed grant applications being made but we are yet to have any luck with these. It was our worst case scenario at the start of the year, and the fact that we have managed to maintain the financial discipline to avoid tapping into the term deposits we have in reserve, is a great sign that we can make the most of the grants when they do start coming through.

Camps over the last year still presented as the highest cost as expected with the net impact of camps totaling a loss of approximately 34k. This is in line with what was estimated at the beginning of the year. We intend to reassess the pricing around this in the next year to reduce the burden on our members here as well as introducing family prices in order to make the camp more accessible for families.

This year 41% of total expenses incurred by the TSAA have been classed as administrative expenses. This is a disappointing outcome when compared to last year, where only 37% of expenses were administrative costs. This isn’t inherently a representation of increasing costs but rather a reduction in non-administrative costs at a more substantial rate than administrative ones. Nonetheless, I have set a target of reducing admin costs to 20% of total expenses in the next financial year so that more of the capital donated to the TSAA is being used for the program’s we want to be championing.

Overall a turbulent year financially and one that has taken a lot out of me and many other people in the TSAA. I would like to thank all of our volunteers. camp coordinators, support group leaders and phone volunteers for all of their work that is impossible to fully quantify in a set of financial statements but is undoubtedly the thing that keeps an association like the TSAA running.

(02) 9382 3726

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

Useful Contacts

Summer Edition 2023/24

ADDults With ADHD (NSW) Inc. ADDults with ADHD is a charity dedicated to improving the lives of adults dealing with ADHD in themselves, their family, their friends and their clients.

Website: https://www.adultadhd.org.au/ Email: info@adultadhd.org.au ADHD Foundation The Australian ADHD Foundation wholeheartedly commits to providing ADHD help and support to people living with or supporting someone with ADHD. At the Foundation, we work to make the lives of people with ADHD easier and simpler.

Whether it's accessing much-needed support, speaking to a trusted and professional community which can provide advice or simply being a safety network.

Website: https://adhdfoundation.org.au/ Email: support@adhdfoundation.org.au National Support Line: 1300 39 39 19 Australian Centre for Disability Law We promote and protect the human and legal rights of people with disability and their supporters through legal advocacy. Our services include providing free legal advice, taking on selected casework, assisting with referrals, delivering Community Legal Education, and undertaking law reform and projects.

Website: https://disabilitylaw.org.au/ Phone: 1800 800 708 or 02 7229 0061 Email: adviceline@disabilitylaw.org.au

Website: https://www.carergateway.gov.au/ Phone: 1800 422 737 Emergency respite: 1800 422 737 Disability Gateway The Disability Gateway provides free, nation-wide information and services to help people living with disability, their families, friends and carers, in key areas of life including but not limited to finance, employment, health and equipment. The Disability Gateway is for all Australians with disability, regardless of whether they are a National Disability Insurance Scheme (NDIS) participant or not.

Website: https://www.disabilitygateway.gov.au/ Phone: 1800 643 787 Eating Disorders Families Australia We are the national organisation providing support, education, and advocacy services for carers and families impacted by an eating disorder.

Website:https://edfa.org.au/ Phone: 1300 195 626

Australian POTS Foundation The Australian POTS Foundation is committed to improving outcomes for those with POTS by raising funds for improved research, advocacy and support for those living with POTS.

Ehlers-Danlos Australia Our mission is to help connect and support people in Australia with Ehlers-Danlos Syndrome and Hypermobile Spectrum Disorders. To increase awareness and research of these disorders in Australia Website: https://www.ehlersdanlosaus.com/ Email: ehlersdanlosaus@gmail.com

Website: https://potsfoundation.org.au/ Email: admin@potsfoundation.org.au Autism Spectrum Australia (Aspect) Autism Spectrum Australia (Aspect) is Australia's largest provider of services for people on the spectrum.

Family Advocacy We work with families to defend and promote the rights and interests of people with developmental disability.

Website: https://family-advocacy.com/ Phone: 02 9869 0866 or Free call: 1800 620 588 Email: communications@family-advocacy.com

Website: https://www.autismspectrum.org.au/ Phone: 1800 277 328 Beyond Blue The National Depression Initiative – advice and support for people with depression and anxiety, managing a crisis, and other useful links.

Website: www.beyondblue.org.au Phone: 1300 224 636

(02) 9382 3726

Carer Gateway Carer Gateway is an Australian Government program providing free services and support for carers. If you care for a family member or friend with disability, a medical condition, mental illness, or who is frail due to age, then Carer Gateway can help you.

The Australian Government works with a range of health and carer organisations across Australia, known as Carer Gateway service providers, to deliver services to carers no matter where they live in Australia.

JobAccess JobAccess is the national hub for workplace and employment information for people with disability, employers and service providers.

Website: https://www.jobaccess.gov.au/ Telephone advice line: 1800 464 800

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,

IncludeAbility IncludeAbility is designed to support employers who want to create meaningful employment opportunities for people with disability, and people with disability seeking employment, developing a career or considering self-employment.

IncludeAbility is a service of the Australian Human Rights Commission.

Website: https://includeability.gov.au/ Email: includeability@humanrights.gov.au Phone: 02 9284 9600 TTY: 1800 620 241

Website: https://www.legalaid.nsw.gov.au/ Phone: 1300 888 529 Legal Aid Western Australia Legal Aid WA aims to promote access to legal services and information for all West Australians.

Kids Helpline Kids Helpline is Australia’s only free (even from a mobile), confidential 24/7 online and phone counselling service for young people aged 5 to 25. Qualified counsellors at Kids Helpline are available via WebChat, phone or email anytime and for any reason.

Website: https://kidshelpline.com.au/ Phone: 1800 55 1800 (for counselling) Email: https://kidshelpline.com.au/get-help/emailcounselling/ Webchat: https://kidshelpline.com.au/get-help/webchatcounselling/ Learning Difficulties Coalition of NSW Inc. LDC is a not-for-profit organisation providing support and information about children (5-18 yrs) with learning difficulties and related conditions. Located at the Children’s Hospital Westmead.

Website: https://ldc.org.au/ Phone: 02 9806 9960 Email info@ldc.org.au OCD Australia Obsessive Compulsive Disorder is a well known, well studied, mental health issue that affects millions of people across the world. It is characterised by 'obsessions'; unwanted, intrusive thoughts, and 'compulsions': actions either internal or external aimed at reducing the discomfort caused by the obsessions.

Fortunately, safe and effective therapy for treating the condition exists, and can help you get control back over your life.

Website: https://www.ocdaus.org/ Email: contactocdaustralia@gmail.com SPELD NSW Advancing the education and welfare of children and adults with specific learning difficulties.

Website: www.speldnsw.org.au Phone: 02 9739 6277

Legal Aid Services There is a legal aid commission in each state and territory.

Legal Aid ACT Legal Aid ACT helps people in the ACT with their legal problems, especially people who are socially or economically disadvantaged. We can help in criminal law, family law and some civil law matters.

Website: https://www.legalaidact.org.au/ Phone: 02 6243 3411 Email: legalaid@legalaidact.org.au

(02) 9382 3726

Summer Edition 2023/24 Legal Aid NSW If you have a legal problem in NSW, Legal Aid NSW is here to help you.

Anyone in NSW can contact our team at LawAccess NSW. Information officers can provide you with legal information and identify services in your area who can help you.

Website: https://www.legalaid.wa.gov.au/ Infoline: 1300 650 579 Legal Yarn (first nations callers): 1800 319 803 Legal Services Commission of South Australia The Commission seeks to give all South Australians equal access to justice through the legal system, providing free legal information, legal advice and legal education to all. To those most in need, legal representation is also provided, principally in the areas of criminal law and family law, including child support and child protection.

Website: https://lsc.sa.gov.au/ Phone: 1300 366 424 Northern Territory Legal Aid Commission We offer a range of services for the NT community, including legal information, legal advice, representation, family dispute resolution, and education services.

Website: https://www.legalaid.nt.gov.au/ Legal Aid Helpline: 1800 019 343 Queensland Legal Aid We give legal help to financially disadvantaged people about criminal, family and civil law matters.

Website: https://www.legalaid.qld.gov.au/Home Legal information line: 1300 65 11 88 Tasmania Legal Aid Our purpose is to provide legal services to help Tasmanians understand their rights, navigate the system to resolve their legal issues, and get the assistance they need, support and advocate for vulnerable and marginalised Tasmanians, and work with our clients, staff, legal partners and community to improve the legal system.

Website: https://www.legalaid.tas.gov.au/ Phone: 1300 366 611 Victoria Legal Aid Victoria Legal Aid helps people with their legal problems. We offer legal representation, family dispute resolution and non-legal advocacy to those who need it most. We provide legal information, legal advice, and education with a focus on prevention and early resolution of legal problems.

Website: https://www.legalaid.vic.gov.au/ Legal help line: 1300 792 387 Note: The above list of services are provided for information purposes only – no recommendation is given or implied. Individuals must always satisfy themselves as to the credentials or experience of any service providers. The Tourette Syndrome Association of Australia Inc. makes no claims on behalf of nor endorses any specific service. Details are provided as an information resource only and no guarantee of accuracy or efficacy is made by TSAA Inc. If you have a recommendation for a service that could be included here, please contact us at info@tourette.org.au.

info@tourette.org.au

© TSAA Newsletter – Issue 17 Summer 2023/24

PO Box 1173, Maroubra, NSW, Australia,