Fragile X Australia Podcast

Presented by Bev Kadish, occupational therapist, from WriteStart OT. Discussion of sensory diets as a personalized plan of sensory activities designed to help individuals better regulate their sensory systems and improve focus and attention. It is a structured approach to providing the right amount and type of sensory input throughout the day. Individuals with Fragile X syndrome often have difficulties with sensory processing and regulation, and sensory diets may assist with helping the child or adult remain calm, focused and organised. The webinar outlines: * how to create sensory diet * an example of a proactive sensory diet * activating and calming movement activities * deep pressure input/proprioception * heavy work activities * maintaining regulation (fidget and focus) * vibration * oral input *breathing cards * auditory system * visual input *olfactory input *withdrawal area * calming sensory room or space * community based activities * list of sensory resources Bev is an experience OT who has supported many children and adults living with Fragile X syndrome, through her own private practice and the Fragile X Alliance Clinic in Melbourne.Many thanks to the Qantas Side by Side Foundation grant for supporting this webinar.

Presented by Clinical A/Prof Amanda Vincent, MBBS, BMed Sci, PhD, FRACP. Dr Vincent is a clinician researcher combining clinical practice in menopause with menopause related research, translation and education. (Endocrinologist, Menopause Clinic, Monash Health; Head, Early menopause Research, MCHRI, Monash University; Co-Chair POI guideline development group) Dr Vincent's comprehensive presentation covers:NEW INTERNATIONAL GUIDELINE RECOMMENDATIONS on Premature Ovarian Insufficiency published December 2024WHAT IS POI? How common is it? What causes POI?WHAT IS FXPOI? And what causes it?WHAT ARE THE RISK FACTORS FOR FXPOI, including CGG repeat rangeWHAT ARE THE IMPACTS OF FXOI? What are the symptoms?HOW ARE POI/ FXPOI DIAGNOSED? What are the barriers to diagnosis?HOW DO YOU MANAGE FXPOI for your health and wellbeing? Therapies? Other options?IF YOU HAVE FXPOI - what are the essentials?WHAT ARE THE FERTILITY ISSUES associated with FXPOI?WHERE TO SEEK HELP about POI.Dr Vincent profiled new resources on POI for WOMEN and HEALTH PROFESSIONALS:NEW FACTSHEETS & OTHER RESOURCES about POI, co-designed by women with early menopause/POI@ https://www.eshre.eu/Guidelines-and-L... Note: Dr Vincent is Past President of the Australasian Menopause Society and current board member of the International Menopause Society. Webinar production and recording by ‪@albaprime‬ for Fragile X Association of Australia

Presented by Dr. Jonathan Cohen, MD, Medical Director of Fragile X Alliance Clinic and Genetic Clinics Australia, and introduced by Andrea Lee, Executive Director of the Fragile X Society of New Zealand, this episode provides a comprehensive update on the current understanding of the Fragile X (FMR1) premutation.Dr. Cohen delves into Fragile X Premutation Associated Conditions (FXPAC), with a particular focus on FX-Associated Neuropsychiatric Disorders (FXAND). The discussion also includes a brief overview of Fragile X-Associated Primary Ovarian Insufficiency (FXPOI) and Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS).We extend our gratitude to the Qantas Foundation Side by Side grant program for supporting the production of this valuable webinar.

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.

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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.

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.

Bev Kadish is an occupational therapist who has supported children and adults who have Fragile X syndrome through the Fragile X Alliance clinic and her own private practice.Bev discussed the key role sensory processing plays in daily life, and how the sensory processing disorders some people with Fragile X syndrome experience can impact behaviours and daily living. Bev discussed a range of strategies to help give the person who has Fragile X the best chance to feel calm, alert and organised as a result of appropriate sensory input.

In this webinar, Dr. Marsha Braden is finishing up a lecture on learning and teaching individuals with Fragile X Syndrome.The lecture focuses on matching the phenotype and learning characteristics of those with Fragile X Syndrome to reading and math programs.Dr. Braden provides examples of reading programs that use a visual global learning style, such as the Logo Reading System, and emphasizes the importance of comprehension in learning to read.For math, Dr. Braden recommends teaching functional math skills, such as number identification and shape identification, rather than spending time on facts and math in general.She also introduces the Equivalence Board, which matches objects on one side of the board with those on the other side, as a teaching tool for individuals with Fragile X Syndrome.

Second in 2-part series on Understanding Behaviours and Fragile X syndrome, with psychologist and special educator Dr Marcia Braden PhD.Dr Braden presents an extensive discussion on strategies to moderate difficult and challenging behaviours of individuals who have Fragile X syndrome.The key focus in this webinar is on males who have Fragile X syndrome. November 2022.It is noted that this webinar is principally focussing on males who have Fragile X syndrome.In an earlier webinar on Females and Fragile X syndrome (February 2022), Dr Braden addressed strategies to support learning and behavioural challenges for girls and women who have Fragile X syndrome.

The Pre-Implantation Genetic Diagnosis Testing technique can be used in an IVF process to differentiate embryos before transfer.Dr Mark Livingstone, IVF specialist from Genea, joined our webinar series in September 2022 to discuss the PGD process generally, and in relation to carriers for Fragile X who are pre-mutation or full mutation carriers.

The lecture is about Fragile X syndrome in males, and a follow-up lecture for females will be given later. The condition affects the brain, causing various behavioral conditions that limit individuals' interactions and opportunities in society. The lecture discusses the phenotype of Fragile X syndrome and offers intervention strategies to support those affected by the condition.The intensity, frequency, and duration of behavior problems are affected by environmental and medical conditions. Anxiety is a significant challenge for individuals with Fragile X syndrome, and the lecture emphasizes the need for individualized behavioral programs and environmental supports to help them overcome their challenges.