Al is a child and family psychologist in an independent practice in Philadelphia, USA.
Al provides counselling support for children with special needs and their families. He often consults to healthcare organizations and schools. He has authored many articles on the topic of caring for children with complex medical conditions. Al is a regular speaker at the Cure SMA conference in the US and facilitates all the children and teen talk it out sessions. He is a fantastic role model and advocate for SMA, and is passionate about empowering his knowledge to support those on the SMA journey. Al is a father to two adult children Jack and Cara. Jack has SMA Type 1 and was diagnosed in 1995.
Michelle Farrar is an Associate Professor in Pediatric Neurology at the School of Women’s and Children’s Health, University of New South Wales and Consultant Neurologist at Sydney Children’s Hospital Randwick. Her research focus is clinical pediatric neurology, neuromuscular disorders and neurophysiology, aiming to further understand disease pathophysiology, develop treatment strategies and improve patient and family centered multidisciplinary care and support.
Fiona Tolich leads the advocacy efforts in New Zealand, where treatment for SMA is still unavailable. She is a member of the MDANZ, SMA Reference group and a Trustee for Patient Voice Aotearoa, a charity involved in bringing patient groups together in a bid to increase awareness of the medicines access issues in New Zealand. Her primary focus is to lift New Zealand from the bottom of the ladder in terms of medicine spend in the OECD and to promote awareness of the funding issue.
Fiona does all this, whilst living with SMA herself, working in the corporate sector and as a mum to her two children aged 4 and 8.