Elementor #958 - Genetic Epilepsy Team Australia

3 weeks ago

It was great to come together for the recent Gene-STEPS event, recognising the work being done to improve diagnostic outcomes for children with epilepsy and their families.A special acknowledgement to Dr Katherine Howell for driving the Gene-STEPS project, and to Dr Joanna Cobb for her significant contribution to the project and event.We were also incredibly proud of our very own graphic design guru and GETA volunteer, Milanie, who shared her family’s journey at the Gene-STEPS event. Milanie has also shared her family’s experience at the Senate inquiry, helping ensure family voices are part of important conversations about research and support.Gene-STEPS also benefited from the contributions of international collaborators, including Prof Annapurna Poduri from Boston, and Prof Helen Cross and Dr Amy McTague from London.Thank you to everyone involved in Gene-STEPS, and to the families who generously shared their experiences.Murdoch Children's Research Institute - MCRI ... See MoreSee Less

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Genetic Epilepsy Team Australia - GETA

3 weeks ago

Our community’s voices are being heard.After months of sharing evidence and families’ experiences, it was encouraging to see the Senate inquiry recognise that developmental and epileptic encephalopathies (DEEs) involve lifelong needs that go well beyond seizures.🔎 What was great to see?• Specialist DEE nurses included in the proposed workforce plan—a significant outcome for Professor Ingrid Scheffer and the DEER Consortium’s advocacy.• Clearer DEE care pathways and better access to genetic testing, including for adults.• Targeted research, with DEEs identified as a priority.• Better connections to community organisations, peer support, nurses and navigators.📣 What still needs advocacy?• A dedicated DEE part of the National Epilepsy Action Plan, shaped with families.• Fair access to rapid genetic testing.• A specialist DEE centre pilot linking care, support and research.• A clearer, dedicated DEE pathway within the NDIS.These recommendations still need funding and action to make a difference in families’ everyday lives.Thank you to everyone who shared their story. GETA will keep advocating alongside our community to turn recognition into practical support.Read more: www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/EpilepsyinAustralia#GETA #GeneticEpilepsy #DEE #Epilepsy ... See MoreSee Less

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