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.
Anita Brown-Major is an Occupational Therapist who is passionate about the recognition of all people as sexual beings. Anita has worked for over 20 years in neurological rehabilitation and for the last 6 years has been working with Thrive rehab. She has completed extensive research into the importance sexuality (not just sex, but relationships, intimacy and self-esteem) for people living with different abilities and bodies, ensuring a focus on quality of life. Strangely enough Anita loves public speaking and is dedicated to educating of consumers, families and health care professionals to be comfortable in address sexuality as a routine part of therapy.
PLEASE visit www.thriverehab.com.au for further information.
Sarah-Grace Paguinto brings 12 years of experience as a paediatric Occupational Therapist, including almost 6 years as part of the multidisciplinary Neuromuscular Clinic at Sydney Children’s Hospital. Sarah-Grace’s role within the clinic is primarily consultative, providing support to therapists and families regarding Occupational Therapy management of children with neuromuscular conditions, including spinal muscular atrophy (SMA). She has also been involved in education programs within the hospital and community to therapists, schools and non-government organisations. Alongside her clinical role, Sarah-Grace is undertaking her PhD focusing on wheelchair transition for families of children with a neuromuscular condition. This has provided opportunities for her to visit clinics internationally, in order to benchmark therapy services and approaches to intervention for young people with SMA. Her clinical and research interests in SMA include assistive technology such as wheelchair prescription, the psychosocial impact of SMA on children and their families, and collaborative care.
Karen is a physiotherapist who has spent the majority of her career working with children with neurological disabilities. She has worked in the UK , Singapore, NZ and now in Sydney.
She has worked in the community, in private practice, in child development centres and currently as part of theNeuromuscular Team at Sydney Children’s Hospital.
Karen is been involved in the SMA clinical trials undertakenat SCH and is working with the team to respond to the changing needs of children with SMA.
Robin is an Associate Genetic Counsellor who has worked in the multidisciplinary Neuromuscular clinic at the Royal Children’s Hospital in Melbourne since it began in 2008. This clinic oversees the care of more than 400 children with a variety of neuromuscular disorders, including SMA. Robin has published on the care of families with SMA. Robin will be overseeing the day-to-day running of the Australian Neuromuscular Disease Registry (ANMDR), with the SMA Registry being an important part of this.
Angela Wrigglesworth has been an educator for 20 years and currently teaches third grade at the School at St. George Place in Houston, Texas. She has served on numerous non-profit organizations both locally and nationally including the Muscular Dystrophy Association and the Camp For All Foundation. She is a former Ms. Wheelchair Texas and ongoing advocate for people with disabilities. Most recently, she and her husband have founded a company, Cobble and Stone Consulting, where she illuminates paths of opportunities for those facing adversity as an Abilities Advisor. She lives by the quote of famous basketball coach, John Wooden, "Things turn out best for those who make the best of the way things turn out."