Fragile X Australia Podcast

Dr Jonathan Cohen MD, Medical Director of the Fragile X Alliance Clinic in Melbourne, discusses medications and Fragile X Syndrome. Dr Cohen is a regular presenter in Australia, New Zealand and internationally on topics associated with Fragile X, with a clinical practice encompassing both children and adults living with Fragile X syndrome or FMR1 premutation conditions.

Presented by Dr Alex Fois BSc (Adv; Hons I, Medal) BM BCh (Oxon) MRCP FRACP PhD. Dr Fois. Dr Fois is a specialist neurologist and has a subspecialty interest and training in movement disorders including Parkinson's disease, tremor, ataxia, dystonia, and in the injection of botulinum toxin for the treatment of neurological symptoms. This webinar provides a comprehensive overview of Fragile X-associ...

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 difficu...

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 presentatio...

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...

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 d...

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 ve...

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 a...

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. Essent...

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, e...

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 hum...

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 strate...

Sleep disturbance is common in children who have Fragile X syndrome. Sleep specialist Dr Helen (Honey) Heussler unpacks what lies behind the problems initiating and maintaining sleep. She discusses normal sleep development, sleep cycles, the impact that neurodevelopmental disorders such as Fragile X syndrome have on sleep patterns, and predictors for sleep disorders in children. Dr Heussler presen...

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 t...

In this webinar, Dr. Marsha Braden gives a lecture on learning styles and processes for individuals with Fragile X syndrome. She emphasizes the importance of understanding that individuals with Fragile X never stop learning Dr. Braden explains that there is a lack of a particular protein that is important for learning and cognition, which results in anxiety, short-term memory problems, and attenti...

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 webin...

The lecture is focused on Fragile X syndrome in males, with a follow-up lecture for females. The first part of the lecture is focused on defining the phenotype and the second part will address interventions and strategies. The genetic condition affects the brain and causes a spectrum of behavioral conditions, which can limit individuals' interaction and opportunities in society. Behavioral challen...

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.

Essential viewing for a clear understanding of the genetics of Fragile X, and how the Fragile X gene expansion is passed on in families. With a good overview of how Fragile X carrier testing is conducted. Dr Alison Archibald, Group Leader – Reproductive Genetic Counselling at Victorian Clinical Genetics Services, presented this webinar in August 2022.

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, fre...

Watch the video here: https://www.youtube.com/watch?v=BHYImbKraqw Sensory processing difficulties are very common for children and adults who have Fragile X syndrome, and can impact daily living and behaviours. Bev outlined the importance of creating a Sensory Diet and how to implement it practically; what sensory integration therapy is and how it helps with Sensory Processing Disorders; maintaini...