Paediatrician, Halifax, Canada

drkimblake.com

Dr. Kim Blake is a professor of Pediatrics at Dalhousie University in Nova Scotia, Canada. She has been researching in CHARGE syndrome over the last 35 years and has published extensively. She has answered research questions concerning post-operative airway events, sleep apnea, bone health, cranial nerve abnormalities and gastrointestinal issues. In the last 10 years Dr. Blake has partnered with Dr. Jason Berman and they have developed a zebra-fish-model of CHARGE syndrome to answer further research questions. With this model they have been able to understand in more detail the Vagus Nerve in CHARGE syndrome which has influenced our clinical knowledge of poor gut motility. A zebra-fish-model has been used for research to support clinical findings of adverse anaesthesia events in individuals with CHARGE syndrome. Given the increased risk following anesthesia, individuals with CHARGE syndrome should have combined procedures where possible in one anesthesia. Dr. Blake developed the CHARGE syndrome checklist for families, individuals, and professionals to use as a clinical guide and a teaching tool for managing CHARGE syndrome.

Deafblind Educational Specialist

David Brown is a deafblind educational specialist who has been working with children with CHARGE syndrome since 1983. In the United Kingdom he was the Head of Family & Children Services for Sense. He moved to California in 2000 to work with the state deafblind project, based in San Francisco. He retired in 2014 but still works extensively as a freelance educational consultant. He has given presentations about CHARGE syndrome in 14 different countries, and in 24 states in the US. His articles about CHARGE syndrome have been translated into at least 12 different languages. In 2005 David was given the Star in CHARGE award by the CHARGE Syndrome Foundation, and in 2013 he received the Lifetime Achievement Award from Deafblind International.

PhD, Professor of Psychology, Central Michigan University

Timothy S. Hartshorne, PhD, is a Professor of Psychology Emeritus at Central Michigan University, specialized in school psychology. Dr. Hartshorne has been interested in CHARGE syndrome since the birth of his son with CHARGE in 1989. When it became clear in the mid 1990’s that many children with CHARGE develop severe behavioral issues, he decided to refocus his research on this problem. In addition to his publications on CHARGE, Dr. Hartshorne has been a frequent presenter at conferences in many countries and has presented at every U.S. conference since the first one in 1993. In 2005 he was awarded the Stars in CHARGE by the CHARGE Syndrome Foundation.

Mississippi State University

Dr. Kasee Stratton-Gadke is a licensed psychologist, nationally certified school psychologist, and Associate Professor in School Psychology at Mississippi State University. Dr. Stratton-Gadke currently serves as the Executive Director of the Mississippi institute on Disabilities, serving over the T.K. Martin Center for Technology and Disability and the Autism and Developmental Disabilities Clinic.

Dr. Stratton-Gadke holds a doctorate in School Psychology from Central Michigan University. She completed a doctoral and post-doctoral fellowship at Johns Hopkins School of Medicine and the Kennedy Krieger Institute in Baltimore, Maryland. Dr. Stratton-Gadke directs of the Bulldog CHARGE Syndrome Research Lab. She has a nearly 20-year background researching CHARGE Syndrome with a specific focus on behavioral concerns for all ages and adult issues. Her clinical and research background primarily consists of clients with developmental delays, Autism, and rare genetic conditions. She has presented at many international, national, and local conferences on her work.

Speech and Language Therapist and Deafblind Consultant - Vision Australia, Victoria.

Steve Rose is a Certified Practicing Speech Pathologist based at Vision Australia in Melbourne, with experience of working in the deafblind field for over 25 years. He recently moved from the UK, having previously worked in the Wolfson Neurodisability Team, Great Ormond Street Hospital, as well as in independent practice, and for the deafblind charity, Sense; and has worked with children with CHARGE syndrome in all these roles. He has established skills in the engagement, assessment and management of children and young people with profound and multiple disabilities, relating to sensory impairment and associated conditions. This includes deafblindness, cerebral palsy, autism, and other rare diseases. Steve is passionate about developing evidence-based practices focusing on parent-child interaction, tactile communication, and early intervention. He is a national advisor (deafblindness) for Royal College of Speech and Language Therapists and an active collaborator in national and international groups focusing on deafblindness, tactile language and cognition.

Psychologist - Mississippi State University

Dr. Dan Gadke is a licensed psychologist, board certified behavior analyst, and a national certified school psychologist. At Mississippi State University, he is a professor of School Psychology and serves as the Department Head of Counseling, Higher Education Leadership, Educational Psychology, and Foundations, the Associated Dean for Research for the College of Education, and the Co-Director of the Autism and Developmental Disabilities Clinic.

Dr. Gadke holds a doctorate in School Psychology from Illinois State University. He completed his doctoral and post-doctoral work at Johns Hopkins School of Medicine and the Kennedy Krieger Institute in Baltimore, Maryland. Dr. Gadke’s research and clinical work focuses on the effectiveness of academic and behavior interventions from an applied behavior analytic framework, with a specialty focus in severe behavior management. Dr Gadke has over 20 years experience working with individuals with a variety of disabilities, including CHARGE Syndrome over the last decade.

Rob’s career was as a teacher of children who are deaf or hard of hearing. He also worked with children who were blind or had low vision. This led to working with children who were deafblind, which in turn led to his involvement with children who have CHARGE syndrome. In the late 1980’s, he along with a group of parents, established the Australasian CHARGE Syndrome Association, which led to their first conference in 1994. This is now CHARGE Syndrome Australasia. Rob has remained involved at a local and international level. He has presented at conferences in Australia, New Zealand, the USA and Germany. In 2007 he received a ‘Stars in CHARGE’ award from the USA Foundation and in 2018 he became a Member in the General Division of the Order of Australia. He is now retired but remains an active member of CHARGE Syndrome Australasia.

Claudia Junghans and her husband Heiko have three children, the eldest of whom has CHARGE syndrome. In 2005, Claudia established a foundation of a German CHARGE internet forum and is the founding member of German CHARGE Syndrome e.V. which supports families in Germany and Europe. As Head of the Association, Claudia coordinates annual conferences, special project weekends, regular newsletter and publications. She provides consultation to families and presents on CHARGE syndrome at conferences. In 2021, she was awarded the Federal Cross of Merit on the Long Ribbon. And in 2023, she completed transitions coach training. Her background is in hotel management and event management.

Occupational Therapist | Behaviour Support Practitioner | Deafblind Consultant

Theresa brings over 20 years of experience as an Occupational Therapist (OT). Theresa graduated with a Bachelor of Occupational Therapy in 1999 and furthered her education with a Master's in Public Health in 2012, enhancing her evidenced-based practice and advocacy for comprehensive, person-centred care.

Since 2019, she has been a member of the Deafblind Therapy team at SensesWA, serving as an OT, behaviour support practitioner, and deafblind consultant. During this time, Theresa has discovered her true passion for deafblindness and working with people with CHARGE syndrome. Her approach is deeply rooted in collaboration, working closely with individuals, their families, and interdisciplinary teams to ensure holistic support and empower individuals to achieve their best life. Before joining SensesWA, Theresa's career spanned various facets of healthcare, including inpatient neurorehabilitation, rehab-in-the-home, and acute care for patients with complex needs.

Nas Campanella is the ABC’s National Disability Affairs Reporter. Nas is totally blind and has a neurological condition called Charcot-Marie-Tooth (CMT) which means she can’t read Braille. After completing a Communications degree at the University of Technology Sydney, majoring in journalism she started with the ABC as a cadet. Nas has worked as a regional reporter in south eastern New South Wales and then as a triple j newsreader for seven years. In taking on this role, Nas became the first blind newsreader in the world to read and operate the studio for herself live to air. In 2020 she was appointed to the senior national Disability Affairs role. Nas travels the world to speak at events, helping to motivate people on issues ranging from inclusive education, adaptive technology, accessible travel and the importance of empowerment and leadership for women. Now also a proud mum to her son, Nas also shares her experiences navigating motherhood as a parent with disability. As well as working in the area of policy development in Australia and across the Pacific, Nas has volunteered abroad creating disability awareness training programs for the United Nations and has held several board positions in the disability sector. Nas is a freelance writer, MC and mentor and is an ambassador for three organisations; The Centre of Perinatal Excellence, Motivation Australia and the Royal Institute For Deaf and Blind Children.

Sarah Dalton is widely known and respected throughout the CHARGE syndrome community for her advocacy work, sporting achievements and acting roles. She lives by her motto ‘it’s cool to be kind’, consistently promoting a positive attitude about living with a disability. She has strong opinions on inclusion and how disabled persons are portrayed in the media. In 2019, her story was featured on Attitude TV (NZ), where she gave the world an insight into living with CHARGE syndrome. Sarah is an experienced public speaker having presented at several Australasian CHARGE syndrome conferences, to the New Zealand Government and on panel discussions with Special Olympics. For 2 years she was a member of a working advisory group advocating for inclusion in sport in NZ and presented findings at an international conference in 2023. She is also an accomplished horse rider and has competed in Special Olympics at a national level. A highlight of her career was an acting role on Power Rangers, playing the character Lily.

Stephanie Begas is a filmmaker living with CHARGE syndrome. For the past three years, she has been a part of Bus Stop Films, a non-profit organisation that provides training and jobs in the film industry for people with a disability. She has made a variety of short films and documentaries, including one called "Sensory Overload" which is about the experiences of people with sensory overload, which is something a lot of people with CHARGE syndrome go through. She is incredibly passionate about films and advocacy, two things that should go hand in hand as she believes films have the ability to inspire and raise awareness. There is a long way to go in terms of representation in the media but she is determined to make a difference. These days, Steph has also been into journalism and has experience in presenting and public speaking, notably the 2022 virtual CHARGE syndrome conference where she presented on what it is like growing up with CHARGE syndrome and some of the challenges. Steph will reflect on her journey over the past few years, including her filmmaking experiences, tips for others with CHARGE syndrome, what she has learnt and how she has grown.

Advocacy and Inclusion, Senior Manager

Karen Tippett manages multiple teams within Family Advocacy and Resourcing Inclusive Communities, enhancing families’ knowledge and skills to enable them to effectively advocate for a life of meaningful community inclusion for their family member with a disability.

Family Advocacy NSW

Family Advocacy is an independent, impartial advocacy organisation that supports families to help people with disability achieve a good life. Their work is underpinned by the Social Role Valorisation (SRV) theory which can be powerful for families to use to improve the life of their family member with disability.

https://www.family-advocacy.com/

Disability Advocate

Penny Graham is a social worker and disability advocate with over twenty years of experience. Her recent work supports families of young people with developmental disabilities, across life transitions including high school and post school. Penny currently works for Lifestart Disability Services, an organization supporting children 0-24 years with developmental disabilities. She has recently presented at a Rare Condition, GNAO1 Conference in Boston. She is passionate about assisting families to support young adults to lead full and inclusive lives, a result of her lived experience. Penny’s son Al, the youngest of her 4 adult children lives with complex disabilities and has taught her the importance of ‘keeping a vision’! In 2022 Al aged 21 moved into his own home and recently launched his online business.

Family Advocacy NSW

Family Advocacy is an independent, impartial advocacy organisation that supports families to help people with disability achieve a good life. Their work is underpinned by the Social Role Valorisation (SRV) theory which can be powerful for families to use to improve the life of their family member with disability.

https://www.family-advocacy.com/

Belonging Matters

Teresa Micallef has always chosen to work at the cutting edge of change in community, and has worked alongside people with disabilities and their families for nearly 30 years. She was the Co-ordinator of a family-governed group called Living Distinctive Lives for 9 years, many of whom had circles of support and Teresa assisted them to move into their own homes. Currently, as the Project Manager of Building Community Networks (Circles of Support Facilitation) she continues to be impressed by the power, creativity and resilience of people who experience disability, their families and networks. She sees firsthand the incredible impact engaging positively with a person’s Circle of Support has, and how it can lead to creating a good life and safeguarding the future.

Belonging Matters is a not-for-profit, grass roots organisation that provides information, resources and training together with mentoring and advice about social inclusion and belonging. It aims to inspire and extend the knowledge of people with a disability, their families and allies to enable people with a disability to have opportunities and pathways typical of other citizens in the community - lives that are personally fulfilling, unique, socially inclusive and empowering.

Abstract: Circles of Support

Circles of Support are a group of people intentionally invited to come together in friendship and support of a person with a disability, for the purposes of achieving their goals and protecting their interest, now and into the future.

Teresa will discuss the possibilities and experiences Circles of Support can open up for people, when they are embedded in values of Inclusion and the development of a good Life through the acquisition of Valued Roles. She will share stories of how people found work, joined clubs, moved out of home and began having more say so over their own lives.