The global coronavirus pandemic has brought significant challenges for us all, but particularly for children with developmental and epileptic encephalopathies.
In this episode of SCN2A Insights we are joined by Heather Renton of SWAN and Sue Lenzi, Mental Health Social Worker to discuss how to help children manage through the pandemic.
Heather Renton is the Chief Executive Officer and Founder of Syndromes Without a Name (SWAN) – Australia. SWAN provides information and support to families caring for a child with an undiagnosed or rare genetic condition. Heather is the mother two children, one of whom has a rare genetic condition. Heather is a passionate advocate for families who have children with undiagnosed and rare genetic conditions.
Heather received a Highly Commended in the Service category at the 2017 Premier’s Volunteer Champions Awards. Heather is one of the co-authors on the report “An Ounce of Prevention”, which captured the value of early community engagement and co-design of projects.
Sue Lenzi is a Mental Health Social Worker with nearly 40 years experience, over 10 of those in private practice. Sue started in Child Protection and the Justice Department and then spent 20 years with Anglicare working with homeless youth.
Sue is based in East Kew, Victoria where she provides counselling for a variety of clients, children and adults who are experiencing difficulties in their lives. For over 10 years, Sue has passionately facilitated a playgroup which caters for families who care for children with disabilities and chronic health conditions.
Ms Kris Pierce RN MHSc MWellness, is a rare disease advocate and mother to Will who has SCN2A. Kris has held a range of board, project management, advocate and consumer representative roles and has been instrumental in working with local, state and federal governments to secure funding for multi-million dollar projects. Kris is highly skilled in building teams to work together collaboratively and is a co-founder of Genetic Epilepsy Team Australia (GETA) and SCN2A Australia, and a RARE Global Advocacy Leadership Council member.