Get Involved
For families impacted by Angelman syndrome, community can be a lifeline. The Angelman community will support you through the difficult times and celebrate your hard-earned wins. We understand that receiving a diagnosis can feel overwhelming, and often, it may seem as though control and choice were taken from you. But here, you have the power to choose your level of involvement. Whether you want to stay informed, participate in research, or engage in advocacy, we can support you in whatever way feels right for you.
Sometimes, being involved in the process helps restore a sense of control and empowers you to make a difference, not just for your loved one, but for the broader community. We’re here to support you every step of the way, whether you want to take small steps or dive in fully. Whatever level of engagement feels right for you, we’re here to help you along your journey.
Fundraise
Fundraising is essential to advancing our work at FAST Australia, enabling us to fund research, provide care, and educate families affected by Angelman syndrome. Your support helps us accelerate progress towards treatments and improve lives.
Our focus is on four key priorities:
- Expanding Research through the Global Angelman Syndrome Registry This tool collects vital data to support clinical trials and improve access to treatments, advancing our global research efforts.
- The Angelman Syndrome Clinic Network, asNavigators Clinical Nurse Coordinators in Melbourne, Sydney, and Brisbane connect families to expert care and help upskill local clinicians, reducing emergency visits.
- Addressing Underdiagnosis in Australia We aim to improve early diagnosis and ensure timely care and support for more families affected by Angelman syndrome.
- Ongoing Education; Conferences We provide families with educational opportunities, such as conferences and local events, to equip them with the knowledge to make informed decisions.This year, we will host a conference on September 19-20, followed by a Gala dinner at Doltone House, Darling Island, Sydney.
Your donations fuel these initiatives, bringing us closer to transformative change for the Angelman syndrome community.
Raise awareness
Enabling us to advocate for increased research, clinical trials and policy affecting our children. Raising awareness also means:
- Medical professionals consider Angelman syndrome when trying to reach a diagnosis.
- Families have access to concise information to plan for their future.
- Networks with like-minded families can be formed.
- Therapists can tailor plans for learning.
- Statistics on diagnosis rates are up to date.
- The voice of patients and their families with common needs are heard.
Join our community
We are extremely fortunate to have two dedicated groups supporting the Australian Angelman community. FAST Australia’s focus is on funding research and initiatives that lead towards treatments. The Angelman Syndrome Association Australia (ASAA) works to support, inform, educate, network and advocate for families, including assisting to navigate the National Disability Insurance Scheme and promoting research. Both organisations work collaboratively to advocate for our loved ones.
Follow FAST using the social media links above, and remember to subscribe to our newsletter.
Follow the ASAA here and connect with other Australian parents in a closed Facebook group here – Request to join a closed Facebook group for Australian parents only.
Keep in Touch
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