FX Webinar/Q&A series – FXS Research Roundups and future webinars

July 9th, 2023

The FX webinar/Q&A series continues through 2023.

In July, two webinars profile opportunities to participate in Fragile X-associated research in Australia and provide the opportunity for you to hear some views on the potential for future treatments for Fragile X syndrome.

These webinars will be hosted and moderated for us by Dr Claudine Kraan PhD, Vice-Chair of the Fragile X Scientific & Clinical Research Committee.

 RESEARCH ROUNDUP WEBINAR and Q&A #1 –   Thursday 13 July, 8pm AEST

RECORDING OF PRESENTATIONS – available online soon

Presentations will be followed by live Q&A:

1.  RECONNECT clinical trial in Australia.
Dr Helen (Honey) Heussler MD from the Queensland Children’s Hospital will discuss the RECONNECT clinical trial ( Zynerba Pharmaceuticals), currently underway in Australia, the US and Europe. The study aims to evaluate the efficacy of an investigational gel in helping with symptoms associated with Fragile X syndrome, including anxiety.  Children aged 2-22 years with Fragile X syndrome may be eligible to participate in this trial.

2.  FRAGILE X CARE | ADULTS AND AGEING research study in Australia, 2024.
Dr Mary-Ann O’Donovan PhD from the Centre for Disability Studies, will discuss this study which will be undertaken for FXAA in early 2024. The project will explore the care needs of adults living with Fragile X syndrome, and aim to develop training modules and other resources for disability and aged care workers, and make recommendations for care.

Katie Clapp, President and Co-Founder of FRAXA Research Foundation in the US will talk about FRAXA’s role in supporting early stage research for potential future treatments for Fragile X syndrome, and what FRAXA considers may be on the horizon.

RESEARCH ROUNDUP WEBINAR and  Q&A #2 – Thursday 20 July, 8pm AEST
The presentations in this webinar will cover a clinical trial and research studies:
REGISTER HERE to join us LIVE or watch the recording LATER: https://bit.ly/FXSResearchRoundup2

1.Associate Professor Daryl Efron  from the Royal Children’s Hospital in Melbourne will discuss a clinical trial which seeks to address whether cannabidiol reduces severe behavioural problems in children with intellectual disability.

2. Associate Professor Dr Jasneek Chawla  from the Queensland Children’s Research Centre in Brisbane will profile a Australia-wide three-year multi-centre study to enable early effective sleep interventions to improve functional outcomes and quality of life in children with neurodisability.   The goal of the study is to develop national guidelines for the diagnosis and management of sleep problems in children with neurodisability.

3. Associate Professor Hayley Crawford from the University of Warwick (UK) and Cerebra Network for Neurodevelopmental Disorders will talk about an international research study:  BEOND – Behavioural  and Emotional Outcomes in Neurodevelopmental Disorders.

4. Prof W Ted Brown, Vice-President of FXAA will provide a snapshot of clinical trials for treatments for Fragile X syndrome which are underway internationally.

Thursday 10 August 8pm AEST, with Dr Jonathan Cohen MD, Medical Director of Fragile X Alliance Clinic/Genetic Clinics Australia.
REGISTER HERE:  https://bit.ly/MedicationsAndFragileXsyndrome

Dr Cohen will discuss types of medication which may be recommended to treat conditions associated with Fragile X syndrome – conditions such as anxiety, ADHD, mood disorders, sleep disorders and others.



World Fragile X Day!

22 July | Celebrating everyone living with Fragile X and acknowledging the work being done to ensure early diagnosis and access to future treatments. Your support will help enable us to provide support to the Fragile X community around Australia through our HelpLine, specialist counselling, peer connections, educational webinars, referrals and advocacy. We are grateful for your lead.

Make a donation to Fragile X Association
Fragile X Logo