Community Conference Program

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Community Conference Program Date: Saturday 22 September 2018 Venue: Augustine Centre, 2 Minona Street, Hawthorn Vic 3122 More info: www.cysticfibrosis.org.

1 Community Conference Program Date: Saturday 22 September 2018 Venue: Augustine Centre, 2 Minona Street, Hawthorn Vic 3122 More info: Time Sessions Room 8.30am Registration Foyer 9.00am 9.20am 10.00am Welcome Karin Knoester Chief Executive Officer, Cystic Fibrosis Community Care Advances in treatment and care Associate Professor David Armstrong Director Paediatric Respiratory Medicine/CF, Monash Health Physiotherapy update Dr Brenda Button Senior Physiotherapist, The Alfred Jen Corda Senior Respiratory Physiotherapist, Royal Children s Hospital Shelley Bowen Physiotherapist, Monash Health 10.40am Morning tea Foyer 11.00am 11.40am Government concessions and benefits Cindy Van Rooy Programs & Support Services (Vic), Cystic Fibrosis Community Care CF and mental health Judith Glazner Cystic Fibrosis Clinical Nurse Consultant, Royal Children s Hospital 12.20pm Technipro PulmoMed 12.30pm Lunch Foyer 12.45pm Ages and stages break out groups Grab your lunch and join us - These break out groups are an opportunity for you to meet others who have family member with CF of a similar age over lunch and share information, hints and tips. Baby to preschool Primary School Secondary School Adults Sacred Space Last updated 21 September 2018 Page 1 of 6

Respiratory and Lung Transplant Physician, Alfred Hospital Vanessa Scott Adult who has CF and has had a double lung transplant Transitioning from paediatric to adult care Evelyn Culnane Transition

2 1.30pm 1.30pm 2.15pm 2.15pm Getting the best educational and CF support for your child from child care to high school Jo Evans Education Support Coordinator, Cystic Fibrosis Community Care Transplant Q&A Dr Kovi Levin Respiratory and Lung Transplant Physician, Alfred Hospital Vanessa Scott Adult who has CF and has had a double lung transplant Transitioning from paediatric to adult care Evelyn Culnane Transition Support Service Manager, Royal Children s Hospital Advance care planning Dr Chi Li Palliative Care Physician, Alfred Health Sacred Space Sacred Space 2.55pm Afternoon tea Foyer 3.15pm 4.00pm 4.30pm Q&A with Tony about living with CF Tony Hanna Adult who has CF Closing remarks Karin Knoester Chief Executive Officer, Cystic Fibrosis Community Care Close Conference Supporters Technipro PulmoMed Pty Ltd Major Sponsor CFCC acknowledges the support of the Victorian Government Philips Sleep and Respiratory Care Supporting Partner Last updated 21 September 2018 Page 2 of 6

Welcome and Closing remarks Our speakers Karin Knoester Chief Executive Officer, Cystic Fibrosis Community Care Advances in treatment and care Associate Professor David Armstrong Director Paediatric

After working in paediatrics in New Zealand, The John Radcliffe Hospital Oxford UK and Duke University Medical Centre Durham NC USA, I obtained his FRACP is paediatrics in 1992.

3 Welcome and Closing remarks Our speakers Karin Knoester Chief Executive Officer, Cystic Fibrosis Community Care Advances in treatment and care Associate Professor David Armstrong Director Paediatric Respiratory Medicine/CF, Monash Health David attended the University of Auckland School of Medicine, and qualified MBChB in After working in paediatrics in New Zealand, The John Radcliffe Hospital Oxford UK and Duke University Medical Centre Durham NC USA, I obtained his FRACP is paediatrics in David trained in paediatric respiratory medicine at the Royal Children s Hospital, Melbourne and completed his MD thesis [Longitudinal Study of Lower Airway Infection and Inflammation in Cystic Fibrosis Infants] at the University of Melbourne in David s clinical interest is management of children with severe asthma, and all aspects of cystic fibrosis. David s research interest is the pathogenesis and treatment of early lung disease in cystic fibrosis. David has worked at Monash Health as a paediatric respiratory physician since 1996, and has been Head of Department since In 2013 he was appointed as co-clinical lead of the Victorian Paediatric Clinical Network. Physiotherapy update Dr Brenda Button Senior Physiotherapist, The Alfred Dr Brenda Button started working in cystic fibrosis at Royal Children s Hospital in She is currently employed at the Alfred Hospital, Melbourne where she works as a senior physiotherapist. Previously she received a Winston Churchill Fellowship to develop further skills and knowledge for use in CF. Last updated 21 September 2018 Page 3 of 6

Jen Corda Senior Respiratory Physiotherapist, Royal Children s Hospital Jen Corda is a Cystic Fibrosis Physiotherapist at the Royal Children s Hospital.

She is passionate and has particular interest in optimising airway clearance and treatment adherence with CF patients.

Shelley Bowen Physiotherapist, Monash Health Shelley graduated from La Trobe University with a Bachelor of Physiotherapy.

4 Jen Corda Senior Respiratory Physiotherapist, Royal Children s Hospital Jen Corda is a Cystic Fibrosis Physiotherapist at the Royal Children s Hospital. She was previously at Monash Medical Centre working with both paediatric and adult cystic fibrosis patients. Jen has experience in working with CF patients both in Australia and in the UK. She is passionate and has particular interest in optimising airway clearance and treatment adherence with CF patients. Jen has also worked in educating undergraduate physiotherapy students through Monash University. Shelley Bowen Physiotherapist, Monash Health Shelley graduated from La Trobe University with a Bachelor of Physiotherapy. Upon graduating, she worked as a grade one physiotherapist with Peninsula Health gaining experience in various specialties including the intensive care unit, special care nursery, and respiratory wards. It is her particular interest in both paediatric and cardiorespiratory physiotherapy that drew her to her previous role within the Bolton Clarke CF Community support team and now at Monash Health. Government concessions and benefits Cindy Van Rooy Programs & Support Services Manager (Vic), Cystic Fibrosis Community Care Cindy joined Cystic Fibrosis Community Care (CFCC) in early For almost 4 years, she has worked with the Programs and Support Services team at CFCC, the Victorian CF Community, and the CF Centres to provide advocacy, supports and services to the CF community. Cindy will chat about the different government concessions and benefits that are available along with where the National Disability Insurance Scheme (NDIS) fits in. CF and mental health Judith Glazner Cystic Fibrosis Clinical Nurse Consultant, Royal Children s Hospital Judith Glazner is a psychologist and nurse. She has worked at The Royal Children s Hospital for over 35 years. Judith joined the hospital s Cystic Fibrosis team in 1991 as the Clinical Nurse Consultant. The CF clinic cares for over 260 children and adolescents. Judith recently completed her PhD through the department of Paediatrics at The University of Melbourne investigating the impact of CF on parental differential treatment and the social and emotional adjustment of siblings. She has spoken nationally and internationally about her work and research. Last updated 21 September 2018 Page 4 of 6

Getting the best educational and CF support for your child from child care to high school Jo Evans Education Support Coordinator, Cystic Fibrosis Community Care and Learning Support Teacher/Tutor Jo

Jo s role at CFCC involves working with students, families and educators to help students with CF to maximise their learning opportunities as well as to support educators to become CF Smart.

She's been busy ever since. She works full-time at the Department of Premier and Cabinet as Product Lead for the vic.gov.au website.

5 Getting the best educational and CF support for your child from child care to high school Jo Evans Education Support Coordinator, Cystic Fibrosis Community Care and Learning Support Teacher/Tutor Jo Evans is the Education Support Coordinator at Cystic Fibrosis Community Care (CFCC). She has previously worked as a teacher in a wide variety of educational settings and with different age groups. Jo s role at CFCC involves working with students, families and educators to help students with CF to maximise their learning opportunities as well as to support educators to become CF Smart. Transplant Q&A Dr Kovi Levin Respiratory and Lung Transplant Physician, Alfred Hospital Vanessa Scott Vanessa has cystic fibrosis and had a double-lung transplant in June She's been busy ever since. She works full-time at the Department of Premier and Cabinet as Product Lead for the vic.gov.au website. Vanessa is a volunteer on the Cystic Fibrosis Community Care Speaker Program and also the Membership Officer for the Heart Lung Transplant Trust Victoria. In her spare time, she enjoys the footy, horse racing, attending the ballet and MTC plays and catching up with friends. Vanessa lives in the Dandenong Ranges with her husband David and dog Ella. Your CF transition from child to adult care: Challenges, developments and learnings Evelyn Culnane Transition Support Service Manager, Royal Children s Hospital Evelyn Culnane leads Transition to Adult Care at the Royal Children s Hospital (RCH) Melbourne; a service which since 2010 has provided transition support, preparation and care coordination from paediatric to adult and community services. In 2018, the Service now supports over 1300 young people and their families annually across the hospital and in partnership with adult services; this includes all young people with CF from the age of 15 and their parents/carers. Evelyn s work has also resulted in the development of over 40 joint paediatric and adult service transition pathways in Victoria and significant innovations in the field of transition care. In her spare time, Evelyn enjoys the thrills and challenges of being a mother of two adolescents too! Last updated 21 September 2018 Page 5 of 6

Advance care planning Dr Chi Li Palliative Care Physician, Alfred Health Q&A with adults who have CF Tony Hanna Adult who has CF Tony is a 34-year-old living with CF, but refuses to let anything get

6 Advance care planning Dr Chi Li Palliative Care Physician, Alfred Health Q&A with adults who have CF Tony Hanna Adult who has CF Tony is a 34-year-old living with CF, but refuses to let anything get in his way. With a need for speed, Tony enjoys jet skiing, go karting, and is always on the move. He is a qualified accountant, IT specialist, and builder who has always enjoyed studying. In between his studies, Tony has travelled to Lebanon, UAE, China, and throughout Southeast Asia. He s an active member in the CF community and is always happy to share stories and experiences. Last updated 21 September 2018 Page 6 of 6

Take a deep breath for the future

Transition Support Service Take a deep breath for the future Your continued cystic fibrosis (CF) care Life at an adult hospital Introduction Moving on from The Royal Children s Hospital (RCH) can be a