Podcasts + videos | our knowledge bank on Fragile X

January 1st, 2024

Our knowledge bank on Fragile X is extensive!  We’ve hosted and recorded many workshops and webinars over the years, featuring leading international and local specialists in Fragile X syndrome and the Fragile X premutation.
The video recordings of webinars and workshops are available on our youtube channel 
Many of the webinar recordings are also podcasts on our channels on Spotify and Apple Podcasts.

Fragile X syndrome

Whatever your connection with Fragile X syndrome – as a parent, family member, educator, therapist or disability / aged care support professional – these resources are ideal for early learning about Fragile X, or a refresh.

  • Dr Marcia Braden, internationally renowned psychologist and special educator, on strategies to help with daily living skills, lifelong learning and supporting the behaviours associated with Fragile X syndrome.
  • Dr Jonathan Cohen MD, medical director of the Fragile X Alliance clinic on medications for Fragile X syndrome; health issues for adults with Fragile X syndrome; and the basics of Fragile X.
  • Dr Alison Archibald, genetic counselling lead at Victorian Clinical Genetics Services, on the genetics of Fragile X, and on carrier screening for Fragile X
  • Bev Kadish, occupational therapist, discussing sensory processing disorders associated with Fragile X syndrome – a webinar recording for therapists, and one for families
  • Bev Sher, speech and language pathologist, on differential strategies for supporting communication for those with low level speech communication or higher level
  • Dr Jennifer Epstein, clinical psychologist from the US, on strategies for supporting toileting skills across the lifespan – for children or adults
  • Dr Helen (Honey) Heussler, behavioural and developmental paediatrician, on cannabidiol and Fragile X syndrome.

Fragile X Premutation-associated Conditions
We are seeking to grow our knowledge base on the conditions associated with the Fragile X premutation, such as FXPOI (leading to fertility issues / early menopause), FXTAS (the tremor/ataxia syndrome), and FXPAC (neuropsychatric and physical health problems which some Fragile X premutation carriers may experience).
In the meantime, there are several recordings on our youtube channel:

  • Dr Amanda Vincent, leading Australian endocrinologist and menopause specialist, on what you need to know about FXPOI
  • Dr Mark Livingstone, fertility specialist, on PGD (Pre-Implantation Genetic Diagnosis) and FX premutation carriers
  • Prof Randi Hagerman, leading clinician and researcher from the UC David MIND Institute, on Fragile X premutation health considerations

 

 

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Your generous donation will help FXAA ensure people living with Fragile X are connected, included, understood and empowered. Specifically, your donation (no matter how big or small) will help us maintain and deliver support and connections to the Fragile X community: 1. Counselling support 2. FXAA Helpline - available 5 days per week 3. Webinar program 4. Peer connection and referrals 5. Advocacy work – for example, our Fragile X Care | Adults & Ageing study that we’re undertaking collaboratively with the Centre for Disability Studies is the first Australian study on the support needs, health & wellbeing of adults with Fragile X Syndrome as they age. All support is sincerely appreciated and helps us make a difference.

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