FX Webinar Program 2024

February 20th, 2024

Our FX Webinar series 2024  sees the return of several regular presenters, including Kate Strohm and Dr Marcia Braden PhD.

Over the coming weeks Kate Strohm will present two webinars on supporting siblings of children or adults with Fragile X syndrome. In April and May Dr Marcia Braden PhD will discuss the specific challenges Fragile X syndrome can present for females, and present a new discussion on differentiating Fragile X syndrome and autism spectrum disorder.

We’re pleased to add “Future Proofing” to the  series with an overview of future planning considerations for your child or sibling with Fragile X syndrome.  We expect Future Proofing to be the first of several sessions covering this domain in some detail.

With thanks to Zynerba Pharmaceuticals for an educational grant supporting Dr Braden’s webinars, and to the Qantas Foundation Side by Side grant program for supporting Future Proofing in April and further webinars later in the year.


SUPPORTING SIBLINGS | KATE STROHM
Kate Strohm founded Siblings Australia, a national not-for-profit organisation promoting better support for siblings of children and adults with disability.  Kate brings her own personal experience to her work, having grown up with a sister with an intellectual disability.    Kate will present two webinar/Q&A sessions.

1.  FOR PARENTS  OF SIBLINGS                     Tuesday 27 February 2024, 8pm AEDT
Discussion / Q&A for PARENTS of young (non-adult children) who have a brother or sister with Fragile X syndrome.
REGISTER HERE FOR A ZOOM LINK TO JOIN THIS WEBINAR

2. FOR ADULT SIBLINGS                                   Tuesday 9 April (new date),  8pm AEDT
Discussion /  Q&A for ADULTS who have a sibling/s with Fragile X syndrome, discussing the challenges and opportunities, nurturing the relationship, supports you may need, and looking to the future.
REGISTER HERE FOR A ZOOM LINK TO JOIN THIS WEBINAR

Please note that these webinars will be LIVE ONLY – the presentations won’t be recorded. 


DR MARCIA BRADEN PHD
Dr Marcia Braden PhD is a licensed psychologist and former educator based in the US, and internationally known for her knowledge of traits associated with Fragile X syndrome. Dr Braden will present several webinars/Q&A events this year. Dates have been set for the first two:

1. FEMALES AND FRAGILE X SYNDROME:  UNDERSTANDING AND SUPPORTING THE CHALLENGES
Saturday 13 April 2024, 9am AEDT

Dr Braden will discuss the daily living challenges which Fragile X syndrome can present for many girls and women, and outline strengths-based strategies to support success in daily life, learning and relationships.  This webinar will be ideal parents, caregivers, educators and disability support teams who are supporting a young or adult female with Fragile X syndrome.
REGISTER HERE FOR A ZOOM LINK TO JOIN THIS WEBINAR

2. FRAGILE X SYNDROME AND AUTISM SPECTRUM DISORDER DIFFERENTIATED
Saturday 11 May 2024,   9am AEDT
Dr Braden will discuss the similarities and differences between Fragile X syndrome and Autism Spectrum Disorder and strategies to support success in daily living. This webinar will be ideal for parents, caregivers, educators and disability support teams who have an individual with Fragile X syndrome and autism spectrum disorder in their care.
REGISTER HERE FOR A ZOOM LINK TO JOIN THIS WEBINAR

The webinars with Dr Braden will be run live, and the recording of Dr Braden’s presentation will be made available on the FXAA youtube and podcast channels later.
These webinars are supported by an educational grant to FXAA from Zynerba Pharmaceuticals.


FUTURE PROOFING |  SACID (South Australian Council for Intellectual Disability)
Tuesday 23 April 8pm AEST
This webinar is our first addressing future planning for family members with Fragile X syndrome, and we expect to address this area in further detail.  This session is presented by SACID, a not-for-profit organisation which focuses on adults with intellectual disability.
This session will cover:
* Services that can help you as parent/caregiver
* Circles of support and microboards
* Carer wellbeing and advocacy
* Supported decision making
* Wills and guardianship
REGISTER HERE FOR A ZOOM LINK TO JOIN THE WEBINAR

This webinar is supported by an educational grant to FXAA by the Qantas Foundation Side by Side grant program.

Please note that this webinar will be LIVE ONLY – the presentations won’t be recorded. 

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Survey for parents / carers of adults with Fragile X syndrome

FRAGILE X | ADULTS & AGEING. We're undertaking the first Australian study on the support needs, health & wellbeing of ADULTS with Fragile X syndrome. Our goal is to enhance quality of life for adults with Fragile X syndrome as they age. We invite parents or carers to participate in our SURVEY. The survey has questions about: 1. GENERAL HEALTH AND WELLBEING of the adult with Fragile X syndrome. 2. EFFECTIVENESS OF EXISTING SUPPORTS for the adult with Fragile X syndrome as they age. 3. FUTURE PLANNING concerns of families & carers who provide support 4. ANY GAPS IN SUPPORTS OR SERVICES which may impede best outcomes in care. From the information contributed through the Survey we will develop training modules for frontline carers and tools for advocacy. The Survey can be completed ONLINE, in PAPER FORM, or by PHONE. Contact us for more information - support@fragilex.org.au or 1300 394 636

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