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Fragile X Association of Australia is a member-based organisation which serves as the peak body for the Fragile X community across Australia. We offer information, support, education, advocacy and referrals...
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Fragile X Association of Australia is a member-based organisation which serves as the peak body for the Fragile X community across Australia.
We offer information, support, education, advocacy and referrals to individuals who are impacted by Fragile X-associated disorders and to their families, carers and health and disability service providers.
Visit http://fragilex.org.au
show less
We offer information, support, education, advocacy and referrals to individuals who are impacted by Fragile X-associated disorders and to their families, carers and health and disability service providers.
Visit http://fragilex.org.au
Fragile X Australia Podcast
Fragile X Australia Podcast
Webinar - Research Roundup (July 2024)
16 JUL 2024
ASD and FXS (Dr Marcia Braden)
19 MAY 2024 · Where an individual has a co-diagnosis of Fragile X syndrome (FXS) and Autism Spectrum Disorder (ASD) it’s essential to ensure that effective and targetted strategies are put in place.  Dr Marcia Braden says “While there are some similarities in behaviours associated with the two conditions, it's important that allied health, disability support teams, educators and parents clearly understand the differences between FXS and ASD.     It's often assumed that the diagnosis of ASD drives programming of supports for a person with a dual diagnosis, but the anecdotal evidence doesn't support that." In this webinar Dr Braden compared and contrasted learning style, social interaction and behavioural strategies taking into account FXS and ASD.
Females and FXS (Dr Marcia Braden)
8 APR 2024
Toileting Strategies and Supports Across the Lifespan, Part B (Dr Jennifer Epstein PsyD.)
2 DEC 2023 · Second in a 2-part series presented by psychologist Dr Jennifer Epstein to help parents and carers understand the type of approach that may be most successful for their child or adult, based on individualised factors, in achieving success with toileting skills.
This webinar focusses on support strategies for children over the age of 10 and older through adulthood.
Part A in this series provides very useful background about the trajectory of toileting skills development for individuals with Fragile X syndrome, and the challenges that the delays associated with Fragile X syndrome present. It is recommended listening.
Dr Epstein is co-founder of South Shore Psychological Services in the US (Massachusetts).
She is a regular presenter for the National Fragile X Foundation in the US, and has many years of experience in Fragile X clinics and supporting individuals with Fragile X syndrome in her practice.
Toileting Part B was recorded 2 December 2023.
Toileting Strategies and Supports Across the Lifespan, Part A (Dr Jennifer Epstein PsyD.)
18 NOV 2023 · Communication, sensory, motor, physiology & cognitive delays are commonly associated with Fragile X syndrome.
These delays can pose challenges for building toileting skills in childhood and retaining those skills throughout life.
Psychologist Dr Jennifer Epstein joined our webinar series to help parents and carers understand the type of approach that may be most successful for their child or adult, based on individualised factors.
This webinar focusses on support strategies for children to the age of 10.
Dr Epstein shared data from the US FORWARD Study which illustrates toileting skill development trajectories for female and male children with Fragile X syndrome, from early childhood to teens.
Dr Epstein is co-founder of South Shore Psychological Services in the US (Massachusetts).
She is a regular presenter for the National Fragile X Foundation in the US, and has many years of experience in Fragile X clinics and supporting individuals with Fragile X syndrome in her practice.
Part A November 2023.
Part B focussed on support strategies for older children and adults and was recorded on 2 December 2023.
Understanding Anxiety & Behaviours in Fragile X syndrome (Dr Marcia Braden PhD)
11 NOV 2023 · Fragile X-associated anxiety has a significant impact on daily living and on behaviours for children & adults with Fragile X syndrome.
Psychologist and special educator Dr Braden discusses how this anxiety is different to that experienced by neurotypical individuals.
She presents practical tips and strategies for helping an individual to manage the anxiety and achieve the best outcomes.
Essential viewing for parents, carers, family members, educators, therapists, disability support workers, employers and everyone who is supporting a child or an adult with Fragile X syndrome.
This webinar, presented in November 2023, is an update of Dr Braden’s earlier webinar on Anxiety.
It was co-hosted by Fragile X Association of Australia and Fragile X New Zealand.
Medications and FXS (Jonathan Cohen) - Webinar
10 AUG 2023 · Dr Jonathan Cohen MD presents a discussion of conditions associated with Fragile X syndrome and the types of medications which may be recommended to treat these conditions, which include anxiety, ADHD, aggression and self-injury, OCD, mood disorders, epilepsy and sleep disorders.
Webinar recorded 10 August 2022.
Dr Jonathan Cohen MD is the Medical Director of the Fragile X Alliance Clinic in Melbourne. https://fragilex.com.au/
Dr Cohen is a member of the FXAA Fragile X Scientific Clinical and Research Committee.
He is a regular presenter in the FXAA webinar series.
Adults & Ageing with Fragile X syndrome: national study (Dr Mary-Ann O’Donovan PhD)
13 JUL 2023 · Announcing the first Australian study of adults living with Fragile X syndrome. From early 2024, our collaboration with Centre for Disability Studies (at University of Sydney) will:
* Explore the need for and effectiveness of supports for the ADULTS, particularly those in residential care / group home settings
* Explore the need for and effective supports for CARERS of the adults living at home, eg supports for future care planning and transition in later life
* Produce best practice information resources and care strategies for the disability and aged care workforce
* Generate recommendations and advocate for health policy and practice improvements.
From our FX Research Roundup webinar 13 July 2023.
Cannabidiol and Fragile X syndrome (Dr Helen (Honey) Heussler MD)
13 JUL 2023 · r Honey Heussler describes the scientific rationale underpinning the RECONNECT cannabidiol (CBD) FX clinical trial currently underway in Adelaide, Brisbane, Melbourne & Sydney. The RECONNECT study is looking to understand whether the (Zynerba) ZYGEL CBD transdermal gel product helps in some behavioural issues associated with Fragile X syndrome. Dr Honey Heussler outlined the working of the human endocannabinoid system, the impact of Fragile X syndrome on that system, and how cannabidiol (non-THC CBD) can provide regulation and control. Dr Heussler also outlined the operation and findings of the earlier clinical trial phases which have preceded Zynerba’s current RECONNECT study. The RECONNECT study remains open in Australia until 31 March 2024. Individuals with a diagnosis of Fragile X syndrome and who are aged 3-22 years old and have behavioural symptoms may be eligible to participate in the study. From our FX Research Roundup webinar July 2023.
Fragile X Association of Australia is a member-based organisation which serves as the peak body for the Fragile X community across Australia. We offer information, support, education, advocacy and referrals...
show more
Fragile X Association of Australia is a member-based organisation which serves as the peak body for the Fragile X community across Australia.
We offer information, support, education, advocacy and referrals to individuals who are impacted by Fragile X-associated disorders and to their families, carers and health and disability service providers.
Visit http://fragilex.org.au
show less
We offer information, support, education, advocacy and referrals to individuals who are impacted by Fragile X-associated disorders and to their families, carers and health and disability service providers.
Visit http://fragilex.org.au
Information
| Author | Alba Prime |
| Organization | Alba Prime |
| Categories | Medicine |
| Website | - |
| support@fragilex.org.au |
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