FXAA Annual Report 2024-2025 by Fragile X Association of Australia

Fragile X Association of Australia Inc Registered office: Suite 204, 20 Dale Street, Brookvale NSW 2100 ABN 18 655 264 477 ARBN 626 478 966 2

PRESIDENT’S REPORT It is with some sadness, but a great deal of pride, that I write my last President’s Report.

The value of these face-to-face conversations and catch-ups cannot be overstated.

Although I had another year to serve, and another term on the Board, the “real life” of Fragile X syndrome is rightly demanding more of my time and energy. Supporting my son Daniel to find and transition into Support Independent Living is taking all of my mental and emotional reserves and I need to give this process the focus that it deserves. I am sure many of you can relate.

Our webinar program continues to provide information and the opportunity to interact with a range of experts in Australia and overseas. We keep up with treatments for Fragile X syndrome, FXTAS (FX-associated Tremor Ataxia syndrome) and symptoms associated with FXPM (Fragile X premutation, including premature menopause), as well as developing research areas. These webinars not only support families in real time; they also build a rich library of enduring resources on our website, YouTube channel and podcast platforms. It is exciting to hear about potential future treatments and to know that our community is well informed as these developments progress.

I came to this decision after the AGM notice went out, so in addition to the advertised vacancy there will be a casual vacancy arising from my departure. Your Board is highly skilled, deeply committed and well placed to continue leading the Association. The addition of new Board members will further broaden the mix of expertise and lived experience guiding our work. It’s my great honour to reflect on the achievements of the past 12 months, and also on my almost 30-year involvement with FXAA.

We are reaching the pointy end of our adults and ageing with Fragile X syndrome research study. The large volume of data continues to be explored, and we conducted a very successful workshop in early September, with staff from Centre for Disability Studies at Sydney University, our Lived Experience Panel, a number of family members and government and agency representatives. The work to develop the training modules is underway with the National Centre of Excellence in Intellectual Disability Health (the Centre).

As a Health Promotion Charity, we raise awareness and provide education on Fragile X-associated conditions while supporting the members of our community living with FX and their family/member carers. This year we have achieved this to a remarkable degree through the tireless work of our two wonderful staff members – Executive Director Wendy Bruce and Family Support Counsellor Liz Jewell – supported by the Board and a large team of generous volunteers and donors.

I particularly want to extend my thanks to Wendy and Liz who work tirelessly, particularly over many weekends, and to the Board for their support. Special thanks to the Cunningham family and many other donors whose generosity allows us to continue our operations, and to the organisations that partner with us, including Dean Gardiner OAM and the Bridge to Beach, the Centre for Disability Studies and the Centre.

We have had significant exposure at academic and professional forums in the health, genetics and intellectual disability sectors. Presentations on our Fragile X Care | Adults & Ageing research, pre-pregnancy carrier screening and focus on FXTAS have been delivered at: the International Menopause Congress • the Human Genetics Society of Australasia Annual Scientific Meeting • Australasian Society for Intellectual Disability and developmental disability nurses (PANDDA) conferences • and through Healthed, giving us visibility with around 12,000 GPs. We have intentionally expanded our outreach (both face- to-face and online), strengthening our networks and deepening our connection to our Fragile X community. With the support of Board members and volunteers, Wendy and Liz have represented FXAA at disability expos across metropolitan and regional Australia. Liz has combined these visits with opportunities to meet families in person. •

There has been such a huge change in the Association since I first joined in 1995. What began as a few parents sitting around the kitchen table sharing ideas and supporting each other has grown into an Australia-wide group, with strong connections to the US FRAXA Research Foundation, and the European based Fragile X International (FraXI). As governance requirements continue to increase for charities, your Board will ensure that the FXAA meets its obligations while continuing to comply with necessary requirements, and staying firmly focused on what matters most - supporting the Fragile X community. Cynthia. Dr Cynthia Roberts, PhD 3

OUR TEAM

BOARD 2024—2025 Dr Cynthia Roberts PhD, President Cynthia is a trained geneticist and ran a clinical cytogenetics service in NSW particularly focusing on prenatal testing. Cynthia worked at Genea as both Genetics Director and Chief Risk Officer. She served as President of the Human Genetics Society of Australasia and has been involved with FXAA for over 25 years, since the time her now-adult son, Daniel, was diagnosed with Fragile X syndrome. Cynthia lives in Kiama, NSW, and re-joined the Board in 2020, serving as President since 2022. Prof W Ted Brown MD PhD, Vice-President Prof Brown is the retired director of the NY State Institute for Basic Research in Developmental Disabilities. Much of his 35-year research career has focused on Fragile X syndrome and autism. Prof Brown was the first to describe a relationship between autism and the Fragile X syndrome. His team was the first to demonstrate the feasibility of prenatal diagnosis for Fragile X. Prof Brown chairs FXAA’s Scientific, Clinical & Research Advisory Committee. Prof Brown joined the Board in 2018 and is immediate past President. He is based in New York.

Adam Lawrence-Slater, Treasurer Adam lives in Sydney with his wife Charlotte and their teenage son Joshua who was diagnosed with Fragile X syndrome and autism when he was two. Adam worked at Qantas for over 25 years in commercial planning, strategy and operational roles and also worked for a financial planning and analytics role at an NDIS online platform that enables people with a disability to find the right support workers for them. He is a passionate disability advocate and would like to help improve the outcomes of people in the Fragile X community. Adam joined the Board in 2019. Alison Evans, Secretary Alison is a corporate communication leader who helps organisations achieve strategic outcomes by aligning people behind a common purpose, inspiring behaviour change, and building stakeholder awareness and advocacy. Following prenatal genetic screening, Alison experienced first-hand the gaps in clinical understanding about Fragile X. She is passionate about bridging these knowledge gaps in the health sector, and more broadly in the community, to ensure families receive timely, accurate, and comprehensive information and care. She joined the Board in 2022. Belinda DÁmico Belinda is a devoted advocate for people with disability and a proud mum of two young boys with Fragile X syndrome. After a successful career as a Chartered Accountant in senior finance leadership roles, Belinda’s life and purpose shifted following her sons’ diagnoses. Inspired to help other families navigate the NDIS, Belinda went on to found a NDIS-registered organisation in Western Sydney specialising in Support Coordination. She brings compassion, lived experience, and strong governance insight to her role on the Board. She joined the Board in 2021. Andrew Fleming LLB Andrew is a lawyer who currently works as a Senior Manager within the Investigations and Enforcement Division of the Australian Securities & Investments Commission in Adelaide. Andrew has experience working in regulatory compliance and civil litigating at UBS Bank and, before that, as a lawyer for the Financial Conduct Authority in the UK. Andrew and his family lived in London and New York before moving back to Adelaide in 2021. Andrew joined the Board in 2024. Dr Lawrence Bott MBBS (Hons), FRCPA, GAICD Lawrie graduated in Medicine from the University of Sydney and specialised in Pathology. He has recently retired as Chief Medical Officer of Sonic Healthcare Australian Pathology and currently works part-time as a Consultant on Expert Systems. He is the immediate Past-President of the Royal College of Pathologists of Australasia. Through his Chief Medical Officer role and College work, Lawrie has been involved with issues relating to Genetic Pathology testing, including Fragile X, and advocacy to Government. He joined the Board in 2024.

STAFF

Liz Jewell, Family Support Counsellor (part-time) Liz joined FXAA in 2018.

Wendy Bruce, Executive Director (fulltime) Wendy joined FXAA in 2013. 4

YEAR IN REVIEW 2024-2025

Our focus throughout 2025 remained guided by our Strategic Plan 2022-2025 and we continue to make good progress against each of four strategic pillars - Support & Connection, Empowerment, Advocacy and Education.

HIGHLIGHTS 2024-2025

SUPPORT AND CONNECTION

Facilitating access to services and supports

We continue to help people navigate and access services and supports. This includes: •

Supporting the wellbeing of individuals and families People living with Fragile X-associated conditions face a range of challenges - developmental, cognitive, behavioural, social, physical and mental health, and in daily living - across all stages of life. This can affect inclusion in schooling, employment, relationships, housing, community participation and overall wellbeing for the individual and their family.

• • •

Providing practical and emotional support to the Fragile X community is a core part of FXAA’s work. We develop Fragile X-specific supports to help at both the time of diagnosis, and ongoing.

Providing information about Fragile X-associated conditions and their impacts Discussing options for health, disability and mental health support Linking families with clinicians, local services, support groups and community resources Supporting people to prepare for NDIS planning or review meetings

Liz frequently advocates on behalf of individuals and families by writing letters of support to NDIS planners, schools, health services and other organisations. This helps explain the individual’s needs and how Fragile X affects their daily life and improves understanding of why specific supports or adjustments are required.

Counselling remains a major focus. Our Helpline support continues, operating five days a week, 9am–5pm Eastern time, staffed by our Family Support Counsellor, Liz Jewell and Executive Director, Wendy Bruce.

This year, following interstate visits, Liz was regularly invited to speak directly with staff in schools, disability services and community organisations supporting an individual with Fragile X syndrome. Liz used these opportunities to develop Fragile X 101 Sessions which brings together various FXAA resources and webinar content to give a broad introductory overview.

What began as phone-based counselling support has now expanded to include online and in-person counselling, and throughout the year, Liz increased her face-to-face outreach attending interstate disability expos to help raise awareness and presenting valuable opportunities for Liz to meet with individuals and families Australia-wide.

This additional support mechanism has been widely welcomed as an excellent starting point for building understanding of participants whose knowledge of Fragile X syndrome is limited.

Liz also contributes to our webinar program, hosting and moderating Q&A segments, ensuring that sessions provide both education and emotional support. This year, Liz co-presented a webinar with Dr Jonathan Cohen - New Diagnosis of Fragile X Syndrome – What Next? – providing an additional point of connection and reassurance to families. Facilitating peer support and connections Peer support can help alleviate the isolation experienced by families and individuals, particularly those living in regional or remote areas, or in settings where Fragile X is not widely understood.

Over the past year, Liz has increased the number and range of online peer support sessions. These sessions connect people with shared experiences – for example, parents of children with a recent Fragile X syndrome diagnosis, carers supporting adults with Fragile X, and people living with FXTAS and their partners. Liz’s presence ensures a safe and supportive environment, where participants can share their stories, ask questions and learn from each other. In-person peer support gatherings have also expanded. During interstate visits, Liz organises informal catch-ups in parks, sensory-friendly venues or community spaces, often scheduled alongside disability expos. These opportunities to meet face-to-face strengthen social connections and help families feel part of a wider Fragile X community.

EMPOWERMENT

Australian leaders such as FRAXA Co-Founder Katie Clapp and A/Prof David Godler from MCRI. These events help families and health professionals understand how research developments may shape future testing, treatments and supports.

GUIDELINES / RESOURCES

Over the next year international FX organisations we are affiliated with will produce a suite of new international clinical care guidelines. These will include guidelines developed by a Fragile X International expert working group on screening & diagnosis and on management, care and support for children and adults with Fragile X syndrome. Guidelines on management of FXTAS symptoms will be developed through National Fragile X Foundation (US) and international experts. We will work to promote these resources to Australian families and health professionals, helping ensure that best-practice care is accessible and understood.

Increase understanding and knowledge of Fragile X conditions and their impacts Our FX Webinar Program is a well-used support service. In financial year 2025 we delivered 13 webinars, with a further six delivered July to November 2025, covering high-value information delivered by subject matter specialists, and providing opportunities for the live webinar audience to engage with these specialists in Q&A forums. It's a privilege to have the support of highly-regarded professionals who share their knowledge and experience. Our goal is to equip families, carers and individuals with clear, trustworthy information about Fragile X-associated conditions, and to provide opportunities to ask questions directly of subject matter experts. The majority of these webinars are available free of charge via our YouTube channel and podcast platforms. They form part of a growing library of resources on Fragile X-associated conditions.

Increase knowledge and skills to navigate the NDIS and other services Families affected by Fragile X often need to navigate complex service systems, including the NDIS, health, education and community supports. We can help build skills and confidence working with these systems over the long term. During the year we hosted webinars with experts such as Margaret Duncan (Duncan Legal) on legal planning and decision-making, and Jaquie Mills (Microboards Australia) on establishing sustainable, person-centred governance structures around people with disability. Sessions with allied health professionals, including occupational therapist Bev Kadish from WriteStart OT, explored practical strategies to support participation at home, school and in the community, and how to work effectively with therapists, educators and service providers.

Increase understanding of interventions, management and research One of our key focuses is translating emerging evidence into practical guidance on interventions, management and research. Our webinar program supports this goal. Recent examples: Endocrinologist Dr Amanda Vincent with the latest international guidelines for Fragile X-associated Premature Ovarian Insufficiency, and neurologist Dr Alex Fois with a comprehensive overview of FXTAS.

These activities help families better understand their rights, articulate their needs and engage with services such as the NDIS, schools and health providers to navigate the supports that are right for them.

We continue to share updates from the research community through our annual FX Research Webinar, moderated by Dr Claudine Kraan PhD, which features international and

ADVOCACY

We also collaborate with the National Centre of Excellence in Intellectual Disability Health (the Centre). It is a government-funded organisation established as a response to the significant health disadvantage experienced by people with intellectual disability. Working with the Centre we represent the interests and experience of people with Fragile X syndrome and support the Centre’s focus on preventive health, systemic health issues and policy-level change. The work of the Centre will support the development of clinical expertise, establish a national community of practice, and develop training resources – including e-learning modules for support disability teams who have adults with Fragile X syndrome in their care (see page 12).

FXAA aims to influence policy and practice in disability, healthcare and aged care on matters that affect people with Fragile X syndrome or Fragile X-premutation-associated conditions. This includes advocating for advancements in testing and diagnosis, access to testing and treatments, approaches for improved health and wellbeing, and access to disability supports. We work alongside organisations with shared interests and where a shared voice will amplify a message, such as Council for Intellectual Disability and Inclusion Australia, and we currently have deeper involvement with some other groups.

Earlier this year we were pleased to present an update on our Fragile X Care | Adults & Ageing study at the Centre’s annual conference, helping to raise awareness of ageing and intellectual disability among clinicians, academics and policymakers.

Our Executive Director and Board members represent the Fragile X community in a range of forums.

We remain a member of a Down Syndrome Australia-led Disability Representative Organisation (DRO) Consortium which conducts systemic advocacy and represents people with intellectual disability with a focus on chromosomal variations. Through the Consortium we engage with government on Australia’s Disability Strategy 2021–2031, disability health and aged care policy, changes to the NDIS, and new initiatives such as Thriving Kids and Foundational Supports. This provides a platform for FXAA to raise issues specific to the Fragile X community, such as the transition to a new NDIS approach to eligibility and assessment, which has a focus on domains of impairment rather than a person’s diagnosis.

Increase awareness of Fragile X with government, professionals and the broader community We are a member of Rare Voices Australia (RVA), the peak body for Australians living with a rare condition and participate in the RVA Disability Network, which contributes to policy development by lodging submissions and position statements and engages with the NDIA. At the RVA National Summit in November 2024 we presented an overview of our Fragile X Care project to open conversations about ageing and intellectual disability. The audience included representatives from the Health Department, the NDIA, and organisations representing cohorts of people with other genetic causes of health and disability concerns.

FXAA also raises the profile of Fragile X among health professionals through conference participation. In the past year this included the Human Genetics Society of Australasia (HGSA) Annual Scientific Meeting, where we highlighted the need for consistent approaches to Fragile X testing and access to genetic counselling, and the International Menopause Society Congress in Melbourne where we profiled the connection between early menopause and the Fragile X premutation. Effect public policy change and advocate for improvements in diagnosis, management and supports

As a member of Neurological Alliance Australia (NAA), a collective of not-for-profit peak or national patient organisations representing children or adults with neurological or neuromuscular conditions, FXAA represents people who have FXTAS, a condition not well understood or immediately recognised by health professionals or services. NAA’s recent work includes presenting to government a blueprint for a National Action Plan for neurological conditions 2025-2031 and involvement in advocacy on disability, the NDIS, and aged care. In early 2026 NAA will launch a national survey to build an evidence base of the health and support needs of people with a neurological condition, and the gaps in care and support. We encourage members who have FXTAS to contribute to the survey when it is released.

Over many years FXAA worked with partner organisations such as Cystic Fibrosis Community Care and Spinal Muscular Atrophy Australia to advocate for Medicare-funded reproductive genetic carrier screening. The introduction of two new Medicare item numbers in November 2023, providing once-in-a-lifetime carrier screening for Fragile X, cystic fibrosis and spinal muscular atrophy, was a significant policy milestone. Uptake has been strong, with more than 216,000 women screened to September 2025. Building on this progress, FXAA continues to support efforts by HGSA and others to improve access to genetic counselling for people undergoing genetic testing or screening, and to advocate for expanded reproductive carrier screening for hundreds of genetic conditions. 8

We endorse the recommendations of the Australian Genomics report Expanding the Scope of Reproductive Genetic Carrier Screening (June 2025), particularly those recommendations related to a national screening program, workforce education, equity of access, consistent reporting of results, and training resources for GPs. We welcome the acknowledgement of long-standing advocacy by patient organisations including FXAA and our members which paved the way for equitable access to carrier screening.

The International Menopause Society Congress held in Melbourne in October 2024 provided us with a unique opportunity to profile the connection between menopause and the Fragile X premutation to a very large audience of health professionals. As noted in our 2024 Annual Report, there was a significant interest from international delegates in Australia’s implementation of carrier screening for Fragile X.

Looking ahead we are keen to explore improved and equitable access to AGG interruption (DNA) testing for Fragile X premutation carriers who have CGG repeats within a certain range.

FXAA promotes and supports research that has the potential to improve diagnosis, management and quality of life for people with Fragile X-associated conditions. We participate as a consumer advocate or collaborator in a range of research projects, ensuring that the experience and concerns of the Fragile X community are represented.

Promote research & facilitate opportunities for engagement

We continue to observe significant inconsistencies across states and services in testing for the FMR1 premutation and Fragile X syndrome, including approaches to cascade testing for family members where there is a known family history. We also see an ongoing need for better recognition of FXTAS among health professionals and improved access to testing and diagnosis. Through our involvement with HGSA, the DSA DRO Consortium, RVA and other networks, we advocate for early and accurate diagnosis, consistent testing pathways and timely access to appropriate supports.

• Embedding Genomics and Primary Care: Using Implementation Science to Design a Robust National Approach. A project led by Prof Jeffrey Braithwaite (Macquarie University) to develop strategies to improve clinical capacity to apply genomics in general practice has a key goal of streamlining pathways and resources for GPs offering, and consumers considering, screening tests. • The Epi-Genomic Newborn screening (EpiGNs) program led by A/Prof David Godler at Murdoch Children’s Research Institute will examine whether conditions linked to intellectual disability, autism, severe obesity and seizures can be identified as part of the heel prick test performed in the first year of life of 100,000 Victorian infants. These conditions include Fragile X syndrome, Prader Willi syndrome and others. FXAA remains hopeful that advances in technology, treatments and reduced costs of testing will result in the addition of Fragile X syndrome to the national Newborn Blood Spot screening program. Dr Godler reported on this work at our FX Research Roundup webinar in July 2025.

HGSA is the peak body for professionals involved in the field of human genetics and plays a key role in providing education, training and guidelines in ethics and practice in testing and diagnosis of genetic conditions. FXAA’s active presence at the 48th Annual Scientific Meeting in August 2025 gave us an important opportunity to emphasise the need for a consistent approach to testing and screening for Fragile X, the key need for consideration of supplementary (AGG interruption) testing of FX premutation carriers where indicated, and the critical need for timely and equitable access to genetic counselling for people who receive a high chance result from reproductive genetic carrier screening or a diagnosis of Fragile X syndrome for their child.

• Nurture NextGen Led by Dr Erin Turbitt (UTS) this project involves the co-design of a digital tool to support families of children with genetic neurodevelopmental conditions to receive balanced prognostic information, and has two FXAA members on its consumer panel. Dr Turbitt reported on this work at our FX Research Roundup webinar in July 2025.

Our poster on the Fragile X Care | Adults & Ageing study in the Poster Exhibition at the Meeting sparked many conversations on ageing and intellectual disability, and the need for nuanced care and supports.

• ResponD Project Led by Dr Rachael Cvejic (UNSW) this program seeks to understand responsive behaviours among people with intellectual disability living with dementia, and will run from 2024-29. A FXAA member is part of the Lived Experience Advisory Group. Dr Cvejic reported on this work at our FX Research Roundup webinar in July 2025. • My Health Choices My Way. Announced in September 2025, this five-year national initiative co-led by Prof Iva Strnadová, Dr Emma Palmer and Julie Loblinzk (UNSW) aims to transform health care transitions for young Australians with intellectual disability as they move into adulthood.

EDUCATION

In response to questions raised by GPs at these seminars, Healthed produced a two-part podcast on reproductive genetic carrier screening, featuring A/Prof Marina Berbic (Sonic), FXAA Executive Director Wendy Bruce, Dr Alison Archibald, and hosted by GP Dr Sara Whitburn. The podcasts provide practical guidance for GPs on assessing risk and supporting patients following a high-chance result. Clearly meeting a need, these podcasts are popular downloads from the Healthed podcast library.

In 2025 we’ve taken advantage of key opportunities to present information about Fragile X at health education events nationally. Educate health professionals, educators & service providers Improving health professionals’ understanding of Fragile X-associated conditions remains a key focus for FXAA.

Other Health Practitioners Developmental disability nurses play a key role in supporting the health of people with Fragile X syndrome and other causes of intellectual disability. We participated in the PANDDA national conference in November 2025, with our exhibitor table showcasing recent research in Fragile X syndrome. Our Executive Director presented early findings from our Fragile X Care | Adults & Ageing study.

General Practitioners and other medical professionals Healthed continues to be a major partner in our efforts to reach GPs. In FY2025 FXAA exhibited at nine Healthed face-to-face seminars, and at a further four seminars from July to November 2025 across Melbourne, Adelaide, Brisbane and Sydney. These events, attended by around 12,000 delegates, have enabled us to speak with hundreds of GPs and other primary care professionals about the health issues associated with the FMR1 premutation, reproductive genetic carrier screening for Fragile X, and about Fragile X syndrome.

Menopause specialists are another important audience. As noted earlier, at the International Menopause Congress in Melbourne FXAA’s presence highlighted the connection between the FMR1 premutation and Premature Ovarian Insufficiency (FXPOI) - an estimated 30% of female FMR1 premutation carriers experience FXPOI, with significant health issues as a consequence. The Congress was attended by almost 2,700 delegates (including large numbers of GPs and gynaecologists); two thirds were from Australia.

As we continue to see strong interest from GPs and other primary care professionals in better understanding reproductive genetic carrier screening and the supports their patients may require following a high chance result for Fragile X, carrier screening has remained a focus of our presence at Healthed events this year.

Genetic Counsellors Genetic counsellors are central to testing and diagnosis for Fragile X-associated conditions. FXAA’s Family Support Counsellor, Liz Jewell, presents annually at the University of Melbourne Fragile X Workshop for Master of Genetic Counselling and Genomics students. She is a regular guest in the UTS Meet the Experts series for their Master of Genetic Counselling program, and has served as an adjudicator on course Research Panel.

At our Healthed exhibition table we share practical resources including the Guidance Statement for GPs on females with the Fragile X premutation (prepared with the Fragile X Alliance Clinic) and the Victorian Clinical Genetics Services brochure Understanding fragile X carrier screening results, as well as links to FXAA webinar recordings on carrier screening, IVF/ PGD for FX carriers, FXPOI and FXTAS.

FXAA co-presented on Fragile X with the GOLD (Genetics of Learning Disability) Service team at the NSW Genetic Counselling Education Day, attended by several hundred genetic counsellors. In 2025 FXAA hosted University of Melbourne Master of Genetic Counselling student Holly Dimitrakas for a 100-hour community placement. Holly supported our presence at disability expos and Healthed events, contributed to research for the Fragile X Care | Adults & Ageing project, and helped improve our website and YouTube resources. She gained first-hand experience of the role of a patient organisation from diagnosis onwards. We very much appreciated Holly’s support and keen interest in Fragile X. As noted earlier, our FX Webinar Program also plays a role in educating health professionals, many of whom attend live or use the on-demand recordings as a reference.

Increase educator and allied health understanding of the learning style associated with Fragile X syndrome

attended 11 expos across metropolitan and regional centres in the ACT, NSW, Queensland, South Australia, Tasmania and Victoria, and a further seven expos in the second half of 2024, including our first events in Perth and on the Sunshine Coast. Expos allow us to discuss Fragile X with disability support organisations, therapists and planners, learn about emerging services, and connect them with our resources and webinar library. Disability Expos have also been an important avenue for engaging disability support teams in the Fragile X Care | Adults & Ageing study and for identifying the need for tailored learning resources about supporting adults with Fragile X syndrome.

Educators and allied health professionals are critical partners in supporting learning for children and adults with Fragile X syndrome. Earlier this year, our Family Support Counsellor Liz Jewell was invited to present to Speech Pathology students at the University of Sydney on the communication strengths and challenges associated with Fragile X syndrome. Liz delivered a one-hour lecture that combined clinical information with lived experience, including a video contribution from FXAA member Hugh Rodgers and examples of visual communication supports created by FX parent Helen Tozer for her son Josiah.

Our FX Webinar Program is also widely used by service providers, including disability support workers, NDIS providers and allied health practitioners. Topics such as sensory processing and Fragile X syndrome, differentiating between Fragile X syndrome and autism symptoms, anxiety, and the unique Fragile X learning style help support service providers to work more effectively with individuals and families affected by Fragile X.

Following the lecture, Liz and FXAA member David Cox-Taylor participated in two Q&A tutorials with the students. Feedback from students was very positive, and we look forward to contributing to the curriculum again in 2026.

FXAA is grateful to Impact Institute for providing community booths at their Disability Expo series, to donors such as the Bully’s Campout event in WA for enabling our participation at the Perth Expo, and to previous webinar funders including Zynerba Pharmaceuticals and the Qantas Foundation Side by Side program for grant funding which has supported our educational work.

FX Webinar Program Our FX Webinar Program is a well-used support service and provides key educational content a wide range of topics. Including supporting children and adults with Fragile X syndrome, health concerns associated with the Fragile X premutation, testing and screening for Fragile X and planning for the future for a child or adult with Fragile X syndrome. In financial year 2025 we delivered 13 webinars, with a further six delivered July to November 2025, covering high-value information delivered by subject matter specialists, and providing opportunities for the live webinar audience to engage with these specialists in Q&A forums. Recordings of the majority of these webinars are available free of charge via our YouTube channel and podcast platforms and each have hundreds of views.

Through our FX Webinar Program we also offer content targeted to educators and learning environments, for example sessions on Fragile X and autism/differential diagnosis, toileting and Fragile X syndrome, sensory processing, and strategies that support participation at school and in community programs.

Webinar recordings form part of our growing library of resources on Fragile X-associated conditions. In FY 2025 our video library on YouTube had close to 20,000 views. The most popular content includes our classic Understanding Fragile X syndrome video, the Update on the Fragile X Premutation presented by Dr Jonathan Cohen, the Genetics of Fragile X presentation by Dr Alison Archibald, FXPOI: What do I need to know presented by Dr Amanda Vincent, and the webinar with Dr Marcia Braden on Females and Fragile X syndrome.

These webinars are accessed by teachers, school leaders and therapists seeking to better understand how Fragile X affects learning and behaviour. Increase service providers’ understanding of Fragile X Disability and community service providers are essential in delivering day-to-day supports for people with Fragile X syndrome and related conditions.

Disability Expos continue to be one of our most effective channels for engaging with service providers and allied health professionals. In the 12 months to 30 June 2025, FXAA

ADULTS & AGEING WITH FRAGILE X SYNDROME Fragile X Care | Adults & Ageing Project

Looking ahead:– e-learning resources for the disability and aged care workforce

This year we continued to lead the first Australian study exploring the health, wellbeing and support needs of adults with Fragile X syndrome as they age. The project is a threeyear collaboration with the Centre for Disability Studies (affiliate of the University of Sydney) and the National Centre of Excellence in Intellectual Disability Health (the Centre).

The next phase focuses on developing practical tools for support teams. Working with the Centre, we are developing two short online learning modules for disability and aged care workers who support adults with Fragile X syndrome. These free e-learning modules will cover:

Building on last year, the project has made great progress including:

• understanding Fragile X syndrome in adulthood & older age • supporting health, wellbeing & community participation • communication, regulation and responses to behaviours of concern.

• Two national surveys – one completed by parents and caregivers, and one by disability and aged care support teams, to understand health, daily living, service access and future-planning needs.

These evidence-based, Fragile X–specific training modules will be launched mid next year and hosted in the Centre’s freely available knowledge repository. We will promote them widely through our networks, our presence at disability expos, our webinar program and with our professional partners.

• Detailed analysis of these survey findings, highlighting high levels of support needs in daily living, mental health and communication, and significant gaps in access to behavioural support, psychology and counselling. • Interviews with Australian and international clinicians and allied health professionals with decades of experience in Fragile X syndrome and ageing and ongoing discussions with adults who have Fragile X syndrome (and with parents and caregivers) about priorities, concerns and hopes for the future.

Acknowledgements This project would not have been possible without grant funding from the Henroth Group, whose generous support enables us to undertake this landmark work. We sincerely thank A/Prof Mary-Ann O’Donovan and the team at the Centre for Disability Studies for their tireless work and partnership; our Lived Experience Panel – Megan Levy, Brent Colgrave, David Nicoll and Cynthia Roberts, who have guided every step, from survey design to interpreting findings; Master of Genetic Counselling student Jianglei Wu, supervised by Prof W Ted Brown and A/Prof O’Donovan, for her comprehensive scoping review of international research in this area; and the many parents, caregivers and adults who completed surveys or took part in interviews and workshops.

• A validation workshop to test and refine emerging findings and recommendations held at the University of Sydney in August 2025, bringing together family members, clinicians, disability providers and peak bodies.

We are beginning to share insights with the wider Fragile X and intellectual disability sectors. Our research approach and early findings have been presented at conferences including ASID, PANDDA, HGSA and the 2025 conference of the Centre, with a focus on what other communities can learn about adults ageing with intellectual disability and complex needs.

Their insights are helping to build a much-needed body of knowledge about ageing with Fragile X syndrome and to create practical resources that will support adults with Fragile X to live healthier, safer and more connected lives in the years ahead.

Writing of a series of academic papers is now underway, with the first having been recently accepted for publication in the peer-reviewed International Journal of Developmental Disabilities. The paper brings together findings from a series of interviews with health experts experienced in Fragile X.

DEVELOPMENTS Clinical trials Fragile X syndrome: Advances in understanding the genetic and molecular mechanisms of Fragile X syndrome continue to offer hope for future treatments. Research is exploring gene therapies to reactivate the silenced FMR1 gene, restoring FMRP protein production, and targeted drugs to address symptoms like anxiety and hyperactivity. Clinical trials are testing medications that regulate mGluR5 receptors, and personalized medicine may provide more effective, individualized care. Although these treatments are experimental, ongoing research and clinical trials do offer optimism for improving the quality of life for those living with Fragile X syndrome.

FXTAS: The UCDavis MIND Institute in California recently announced that Prof David Hessl will help lead a major 5-year research project to develop better ways to measure treatments for FXTAS, alongside Prof Peter Ted and Dr Hall, all involved in FXTAS research and practice over many years. The MIND Institute, which discovered FXTAS 25 years ago, notes that “one of the roadblocks to testing potential treatments is a lack of widely accepted validated outcome measures for clinical trials”. The study will enrol 100 people with FXTAS across 3 sites in the US, use tools to track progression of symptoms, develop & test a new version of a rating scale which helps doctors measure changes over time, and create a protocol and system basis for future clinical trials. Prof Hessl says “There are likely to be new medicines soon, including gene therapies, that could help slow down or even stop the disease. We want to be ready”. Read more: MIND Institute website: https://bit.ly/49qBAdr

We acknowledge the disappointment for many in the Fragile X community and for the Harmony Biosciences research team stemming from the recent news that the RECONNECT study did not meet its primary endpoint.

Fragile X syndrome Treatment Trials Update

individuals with Fragile X syndrome. A pilot project showing positive results was published in 2022. Details are not clear about the current status of the project.

Harmony Biosciences (Zynerba) RECONNECT Trial The Phase 3 RECONNECT trial of ZYN002 in Fragile X syndrome did not meet its primary endpoint of improving social avoidance in participants, citing a higher-than-expected placebo response. The RECONNECT Study was a Phase 3 randomized, double-blind, placebo-controlled, multiple-centre study, to assess the efficacy and safety of ZYN002, a pharmaceutically manufactured cannabidiol administered as a transdermal gel to patients with FXS ages 3 to under 30 years old. A total of 215 male and female patients, ages 3 to < 30 years, were randomized 1:1 to receive study drug or placebo during an 18-week treatment period. Doses of treatments were weight-based. The primary endpoint for the RECONNECT Study was change from baseline to week 18 in the ABC-CFXS Social Avoidance subscale score in patients with complete methylation (≥90%) in the FMR1 gene. Key secondary endpoints included change from baseline to week 18 in the ABC-CFXS Irritability subscale score in patients with complete methylation (≥90%) in the FMR1 gene. Further analysis will soon be reported. The study had been running in Australia, and the US.

Prof Randi Hagerman from UCDavis MIND Institute and Canadian collaborators have finished a Metformin trial and their positive results are pending publication, according to personal communication. Dr Jeannie Lee ’s FRAXA-funded project aims to reactivate the silenced FMR1 gene in Fragile X syndrome by using a novel R-loop-based gene editing approach by inducing the cell’s natural repair mechanisms to remove the abnormal CGG repeat expansion and achieve near-complete gene reactivation in patient-derived neurons. Prof Lee is Vice Chair of the Department of Genetics at Harvard Medical School. Dr Joel Richter's team found that the gene, FMR1, which was thought to be completely silenced in Fragile X syndrome, is actually active in most individuals, producing a version of its RNA which does not function normally. This discovery led the team to the idea of designing antisense oligonucleotides (ASOs) to target this RNA to treat Fragile X syndrome, to correct this splicing error and restore production of the missing protein. Funding by FRAXA Research Foundation has been provided to Richter’s lab and to QurAlis and Quiver Biosciences, both Boston biotech companies, to collaborate to refine this therapeutic approach. Prof Richter is based at UMass Chan Medical School.

Shionogi's large Phase 3 trial of zatolmilast is expected to report results later this year including progress on the EXPERIENCE clinical development program (Evaluation of Fragile X Experience in Cognition Expression) in the US. The evaluation phase of two clinical trials conducted in the US. — EXPERIENCE-301 (in the adult male population, 18-45) and EXPERIENCE-204 (in the adolescent male study population, ages 9-17) — have been completed as planned. A small pilot trial had showed safety and improved cognition, which had led to the large trials. The analysis and validation phase that includes a detailed evaluation of primary and secondary has begun and a summary should be forthcoming in the near future. FRAXA Research Foundation has funded a Canadian project that aims to test the safety and synergistic effect of Lovastatin and Minocycline combined treatment in patients with Fragile X syndrome. The hope is to improve behaviour in

Dr Ray Turner and colleagues at University of Calgary are working to treat Fragile X syndrome by replacing small portions of FMRP, the protein which is lacking in Fragile X syndrome, connected to a cell permeable "tat" peptide. This FRAXA-funded project has shown promising results in restoring normal EEG activity in FX mutant mice and may eventually be applicable to humans. Read more: FRAXA Research Foundation www.fraxa.org/ and https://clinicaltrials.gov/ Prof W Ted Brown, Vice-President FXAA November 2025 13

TREASURER REPORT Fragile X Association of Australia (FXAA) continues to be well -resourced to provide support to individuals affected by Fragile X-associated conditions and their families and carers through counselling, outreach, peer connections, our educational webinar program, and facilitated access and referrals to services. FXAA also works to promote awareness of Fragile X in the health & disability arenas and advocate for advances in testing, screening, treatments and care.

Donations of $258,778, including to the Endowment Fund, was a decrease of 66% versus the previous financial year. The comparative decrease largely reflects the one-off donation of $500,000 made to the Endowment Fund by the Cunningham family in FY24. Income from fundraising and appeals by FXAA was $21,884 (decrease of 37% over the prior year) and supported by fundraising for FXAA and donations by members and our connections. Donations from fundraising through the year included Galston Garden Club Open Garden event with funds matched by Masonicare ($4,000), the Sydney City2Surf fun run (approx. $18,000 FY 2024 and into FY 2025), the annual Bullys Campout event in WA ($4,000) and the annual Ellinbank Football Netball Club Fragile X Round ($3,113).

FXAA started the year in a solid financial position due the generosity of the Cunningham family, other committed donors, donations from the community, fundraising, grants and the efforts of the Board in prior years. The Cunningham family has maintained their very generous long-term commitment to FXAA and we are extremely grateful for a donation of $200,000 in FY 2025 to support the operations of this organisation.

In 2025 FXAA celebrated our 12th year as charity partner for the Manly Wharf Bridge to Beach paddle race across Sydney Harbour, with $10,875 raised in 2025. The race is run by Dean Gardiner OAM and team from Oceanpaddler. Approximately $180,000 has been raised from FXAA’s connection with the Bridge to Beach event since 2014. We thank Dean for instigating this charity partnership and for the connection with Shaw and Partners Foundation which has supported the fundraising.

Grant funding is an important enabler of FXAA’s delivery of services and programs. A grant from the Henroth Group supports our Fragile X Care | Adults and Ageing study. The grant has provided $70,000 in funding per annum for 3 years over FY 2024-2026. As noted earlier (page 12), the study is being run by FXAA in collaboration with Centre for Disability Studies (affiliate of University of Sydney). Outcomes of the study will include e-learning resources to build the capacity of the disability and aged care workforce to provide care for adults living with Fragile X syndrome.

Our end of financial year fundraising campaign raised approx. $32,000. We thank Mr David Walker, John & Christine Kelleher, the Smith Charitable Foundation, and HTR Group and others for donations made in FY 2025. This support is sincerely appreciated.

This year FXAA had an operating surplus of $17,880, which includes $ 54,357 in interest, dividends and distributions from the FXAA Endowment Fund. Operational expenditure was above income excluding the Endowment Fund, with fundraising for operations a key focus for the Board in the upcoming year. Income was above the FXAA budget for the year, and expenditure was below budget.

Expenditure ($400,568, down 0.5% versus last year) Our core fixed costs of rent and utilities have broadly risen in line with inflation, and our salaries have had adjustments that keep them aligned with the SCHADS Award. We have made a provision for long service leave. The FXAA is mid-term for the 3-year office lease, with an option for another 3 years. $34,875 of the Fragile X Care | Adults & Ageing grant funds were expended this year including a payment of the first of two instalments of $27,212 to UNSW for production of the e-learning modules which are a key deliverable of the project.

The work of the FXAA staff and Board members is supported by the many volunteers who give their time and expertise to support our initiatives and in fundraising, and by the members who give their invaluable professional services and guidance pro bono, including Martin Davey, John Kelleher, Bruce Donald AM and Daniel Linnet, among others.

61% of expenditure relates to the provision of service to our members and the wider community, and increasing awareness of Fragile X-associated conditions in a range of health and disability forums nationally.

• Financial resources At 30 June 2025, net assets of $1,751,186 largely (81%) comprised the Endowment Fund (net assets of $1,421,138). Net assets increased by 4.1%, largely due to the growth in the Endowment Fund. •

The service to members largely comprises the HelpLine, counselling support, peer connections, educational webinar program, information resources and referral to services. The Webinar Program and our existing library of online resources are an effective and efficient means of providing information and education about Fragile X-associated conditions. These resources are utilised extensively by individuals and families, allied health professionals, disability support providers and educators for professional development.

Operating Result

Income ($418,448, down 53% versus last year) Donations, fundraising and grant funding form the major source of income to fund the support and services provided to our member base and the wider Fragile X community.

TREASURER REPORT cont’d For FY25 our expenditure breakdown is 41% to Support & Member services, 9% to the Adults & Ageing project (from grant funds), 6% to education about Fragile X, 6% to awareness, 30% to organisational management and governance, 6% to rent and utilities, 2% to fundraising/ merchandise

· Outlook FXAA is well-resourced to deliver on its Strategic Plan into the coming years with the ongoing support of the community. The accounts for FY2025 were audited by Mr Ben Hodgkinson of Manser, Tierney and Johnston (MTJ) in Turramurra, NSW. The Board wishes to record appreciation of the audit services which provide important ongoing oversight of FXAA’s financial affairs. The Treasurer commends to members the accounts and the re-appointment of Mr Ben Hodgkinson as auditor.

58% of the total organisational cost comprises salary costs for our two staff members and bookkeeping fees. The cost associated with building health professional and community awareness continues to reflect the leverage gained through our volunteers, supporters and partners and face-to-face health professional education forums and disability expos. Management and governance of FXAA remains critical to effective and efficient operation and ensures compliance with regulatory requirements; this cost is largely salary cost. Dividend income Grants

The Board extends thanks and appreciation to accountant Erene Keriakos who has managed the Association’s bookkeeping since 2019.

Distributions income

Interest

Organisational management and governance

Rent and utilities

Consultations Sponsorships FXAA fundraising & appeals

FX Adults & Ageing Project

Support & member services

Donations—incl Endowment Fund

Fundraising & merchandise Awareness Education

INCOME FY 2025

EXPENDITURE FY 2025

OUR SUPPORTERS Our supporters make it possible for us to keep working towards our vision that people living with Fragile X are connected, included, understood and empowered to live their best possible lives. We are deeply grateful for the ongoing generosity of our members, and of the individuals, families, companies, philanthropic foundations, community groups, and health and disability professionals who stand with us year after year. It is your support that keeps our services going, grows our reach, and makes a real and lasting difference to the Fragile X community.

Cunningham Family HENROTH Group Kate Stokes | Graphic Design Suzanne Gordon | Photography

TREASURER REPORT cont’d Endowment Fund

moderate inflation and market volatility. Additional donations of $1,948 in 2025 to the Fund are appreciated.

· Endowment Fund - Net assets $1,421,138 (2024 - $1,314,018)

In accordance with the Guidelines established by the Board for the Endowment Fund, reviewed and updated in 2025, the funds have continued to be invested conservatively. Following the $500,000 donation from the Cunningham family, and at the request of the Board, the Endowment Fund Committee reviewed the investment strategy. The Committee recommended moving the investment strategy from “Capital Defensive” to “Conservative”. The Committee’s recommendations to modestly increase the mix of Equities from 31% to 42% (currently 41%), and lower fixed interest from 65% to 58% (currently 56%), were accepted by the Board and implemented in October 2024. 1.7% is currently held in cash.

The Endowment Fund was established by resolution of the Fragile X Association of Australia Board in 2011, for the purpose of generating long-term funding for the activities of the organisation. It is intended that over time the Fund will grow to a point where it can generate investment income sufficient to support the core infrastructure necessary for FXAA to fulfil its charitable purpose. To try to meet the objective of self-sufficiency the Fund remains in “accumulation phase”, unless future operational funding falls short to the extent that this reserve must be called upon. The Fund's growth is substantially dependent upon the continued generous support of its donors. To date the Fund has benefited from the support of the Cunningham family: the J & M Cunningham Endowment now constitutes 63% of the total Fund as at 30 June 2025 (2024 63%).

The Fund is maintained and accounted for separately from FXAA’s other funds and is managed on advice provided by a committee appointed by the Board. In FY 2025 the Endowment Fund Committee comprised Martin Davey (chair), former FXAA President John Kelleher, current President Cynthia Roberts and Treasurer Adam Lawrence-Slater.

In 2025 the Fund, like many other investments, performed better than the previous year but has continued to be impacted by poor returns on fixed interest accounts. In 2025 the Fund's interest, dividend and distribution income of $54,357 represented 14% (2024 4%) of FXAA’s annual expenditure of $400,568. The market value of the Fund’s investments increased by $50,841 during the period, a net rise of 3.9% (versus last year’s 1.1%.) The challenge remains to maintain reasonable investment returns in an environment of

After 16 years of commitment to the establishment and management of the Endowment Fund Martin and John have advised that they are stepping down from the Endowment Fund Committee. I and the Board wish to thank them sincerely for their significant contribution of time and expertise and their guidance to the Board through periods of high inflation, market volatility and the financial impacts of the COVID-19 pandemic. The Endowment Fund is in a great position thanks to their stewardship.

You can make a difference Become a Member Membership is free and open to anyone in Australia with an interest in Fragile X

Donate Now or at any point throughout the year. Your donation will help us to provide support to the Fragile X community, improve awareness of Fragile X in the health and disability arenas and advocate for advances in testing, screening, diagnosis and care

Volunteer Let us know if you’re interested in volunteering — there are many ways to get involved and show your support in a way that suits you

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Connect Keep up to date via our website and social media updates

Bequest A very special way of making a positive difference beyond your lifetime. 16

Fragile X is a family of conditions caused by an inherited alteration to a person’s FMR1 gene on their X chromosome. An estimated 90,000 people in Australia are impacted by Fragile X – living with Fragile X syndrome or as carriers of the Fragile X gene premutation. Fragile X syndrome is the leading cause of inherited intellectual disability and has developmental, emotional, behavioural and physical impacts. Around 1 in 5,000 people live with Fragile X syndrome. Several health conditions are known to be associated with the Fragile X (FMR1) gene premutation. Collectively known as Fragile X-premutation Associated Conditions (FXPAC) these include: •

Fragile X-associated Premature Ovarian Insufficiency (FXPOI) which can lead to fertility problems and early menopause

•

Fragile X-associated Tremor Ataxia Syndrome (FXTAS) which is a late onset progressive neurological condition resulting in tremor, gait unsteadiness and memory problems

•

Certain neuropsychiatric disorders (such as anxiety) and other non-psychiatric conditions (such as auto-immune conditions) are also associated with the Fragile X gene premutation and are collectively known as FXAND.

Learn more:

www.fragilex.org.a

Fragile X Association of Australia Inc Registered office: Suite 204, 20 Dale Street, Brookvale NSW 2100 ABN 18 655 264 477 ARBN 626 478 966 www.fragilex.org.au 17

YEAR IN REVIEW — HEALTH EDUCATION FORUMS One of our key goals is improving health professionals’ understanding of testing and diagnosis for Fragile X-associated conditions. Many thanks to Dr Manocha and the Healthed team for giving FXAA a strong profile at a dozen GP education days in Brisbane, Melbourne, Adelaide and Sydney in the past 18 months. Presenting initial findings our Fragile X Care | Adults & Ageing at key scientific and research forums has been an important way to acknowledge the health & Wellbeing support needs of adults with FXS.

YEAR IN REVIEW — WEBINARS Our strong webinar program aspires to support and connect the Fragile X community and educate and inform the disability, allied health and education professionals who work alongside them. In 2025 our expanded program has delivered webinars on more of the subjects that our members have asked for, such as FXTAS, and ‘next steps’ for families with a new diagnosis of Fragile X syndrome. We’ve continued a focus on future planning and other topics core to our program. Wonderful to have so many experts in their field and people with lived experience sharing their knowledge and expertise. Recordings of many of the webinars are online.

YEAR IN REVIEW — FRAGILE X CARE | ADULTS & AGEING Many thanks to everyone who has been involved in progressing the Fragile X Care | Adults and Ageing study which is exploring the health, wellbeing and support needs of adults with Fragile X syndrome. Our Lived Experience Panel have been involved every step of the way and met up in person at the Study Workshop hosted at Sydney University by the Centre for Disability Studies team. Wonderful to have our members contribute to the research in a range of ways in our office and online, and to have the opportunity to talk about the study at a range of conferences. We’re looking forward to working with a team from the National Centre of Excellence in Intellectual Disability Health to deliver online e-learning resources about Fragile X syndrome for support professionals.

Supported by HENROTH Group

YEAR IN REVIEW — FRAGILE X CARE | ADULTS & AGEING

YEAR IN REVIEW — DISABILITY EXPOS Disability Expos give us a chance to connect with our members and meet service providers who are supporting people with Fragile X syndrome. Through these connections we can offer support, information and education about Fragile X. This year we’ve been profiling our Fragile X Care | Adult & Ageing study and the e-learning modules about Fragile X syndrome which will be ready in 2026— free online access for disability and aged care teams and everyone with an interest in Fragile X syndrome.

YEAR IN REVIEW — DISABILITY EXPOS We want to thank Social Impact Institute for involving us in their “community table” program at their Disability Expos. It’s made it feasible for us to be involved in all of their Expos in metropolitan & regional centres this past year, and again in 2026. From July 2024-November 2025 our staff Liz and Wendy, and wonderful volunteers, have made connections in Perth, Canberra, Brisbane, the Gold Coast, Toowoomba, Launceston, Melbourne, Geelong, Hunter Region and Sydney. 20 Expos all up—which is powerful outreach.

YEAR IN REVIEW — FUNDRAISING | BRIDGE TO BEACH PARTNERSHIP 2025 marked the 12th year of charity partnership with the Manly Wharf Bridge to Beach paddle race across Sydney Harbour. Many thanks to Dean Gardiner OAM, the crew from Oceanpaddler and the paddlers for getting behind our cause - and for the fun we have each year watching 100’s of competitors in all forms of craft head over to the finish line at Manly Cove. Over time the Bridge to Beach has raised around $180,000 to help fund our FX Family Counsellor role, which is a key support for families across Australia.

YEAR IN REVIEW — FUNDRAISING Fantastic fundraising in different parts of the country this year! The annual Fragile X Round by Ellinbank Eagles and the Ballarat Dance Awards in Victoria. The Bullys Campout event for pre-65 hotrods and custom classics in SW WA. Sydney City2Surf. The Galston Gardens Club in Sydney, with funds matched by Masonicare. And brilliant creative fundraising by Hayden in WA.

YEAR IN REVIEW — FUNDRAISING | BUILT AND JAC RAFFLE The team at Built Australia is rallying behind the Fragile X community, in honour of Jason and his boys. Launched in November 2025, this incredible raffle will be open until March 2026. Partnering with JAC Motors Australia to offer a JAC T9 4X4 Ute as first prize, Built is keen to raise funds to help Fragile X Association of Australia support, connect and empower Fragile X families around Australia. Raffle tickets are available in NSW only to people 18 and over. To checkout T&Cs and to buy tickets—scan the QR code or head to the Shout For Good site: https://bit.ly/4o8Epn5

YEAR IN REVIEW — WORLD FRAGILE X DAY, 22 JULY 22 July each year celebrates people living with Fragile X and their families, and highlights advances in research for treatments and care. Lighting up for Fragile X is a global movement, with 557 landmarks getting on board in 2025. This year in Australia we were thrilled to celebrate our 10th anniversary of lighting up on 22 July. With strong support from Councils, infrastructure operators, NGOs and businesses in each state and territory, an incredible 126 landmarks shone orange for Fragile X in Australia on 22 July.

YEAR IN REVIEW — WORLD FRAGILE X DAY, 22 JULY Special thanks to the families and their supporters who braved wet and very cold conditions to see the lights this year! Thanks to Brisbane City Council and City of Launceston for being involved every year since 2016— they led the way in shining a light for their local Fragile X families and so many others have followed. Every year Kate Stokes from Launceston creates special graphics for our Lightup campaign on social media and website and Suzanne Gordon takes magnificent photos of the lightup across WA.

Audited Financial Statements 2024-2025 Fragile X Association of Australia Audited Financial Statements 2024-2025 can be downloaded from this page on our website: https://www.fragilex.org.au/about-us/annual-reports/

Fragile X Association of Australia Inc Registered office: Suite 204, 20 Dale Street, Brookvale NSW 2100 ABN 18 655 264 477 ARBN 626 478 966 29