Reach Out October 2019

More documents

Recommendations

Info

TSA News Contents Editorial................................................................................................. 3 President’s Report................................................................................. 4 Six Months In ....................................................................................... 5 Communities Connecting for TSC Global Awareness Day 2019............................................................................14 Connecting with Other Organisations.............................................16 Connecting Through Technology ..................................................... 6 Welcome Kim........................................................................................ 7 TSC Connect, Brisbane........................................................................ 8 The Value of Connections................................................................... 9 Our Financial Results..........................................................................10 EPISTOP: International Research Results on Epilepsy...................17 Research News.....................................................................................18 Australian Families’ Experience with a TSC Diagnosis................. 20 Congratulations to Dr Fiona McKenzie............................................21 The Impact of your Support.............................................................. 13 Snapshot............................................................................................... 22 Our cover image is of participants at the TSC Connect event in Brisbane in May 2019. Tuberous Sclerosis Complex (TSC) affects more than 2000 individuals in Australia and thousands more carers, families and friends who live with the impact of the disease. TSC tumours can grow in any organ of the body, commonly affecting the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy, developmental delay and autism. There is no known cure for TSC, but with appropriate support most people with TSC can live fulfilling lives. Tuberous Sclerosis Australia Works to connect, inform and empower people affected by tuberous sclerosis complex as we work towards a cure for TSC. TSA was established in 1981 as a volunteer organisation to connect families living with TSC. We have hundreds of members including people with TSC and their families along with health, education and caring professionals. Our priorities 1. Ensure Australians with TSC have access to the best possible healthcare 2. Provide up to date and accurate information to all Australians with TSC 3. Support individuals and families affected by so no one has to face the challenges of TSC alone 4. Promote access in Australia to the gobal research program that is working towards a cure for TSC President Debbie Crosby Vice President Michelle Purkiss Committee Member Treasurer Patrick Norris Secretary Alison McIvor Michael Jones Public Officer Debbie Crosby Medical Advisory Board Dr David Mowat, Clinical Geneticist General Manager Fundraising and Communications Dr John Lawson, Paediatric Neurologist Dr Sean Kennedy Paediatric Nephrologist Jackie Gambrell Kate Garrard The TSC Information Service Visit our website for extensive information about TSC for individuals, their families and professionals www.tsa.org.au Call or email us to speak to one of our volunteers. We have regional contacts throughout Australia who can meet face to face and connect you with local services. 1300 733 435 TSA Nurse This is a free, confidential information and support service for those in Australia. You can speak with our Nurse about any TSC-related questions or concerns you have. Email nurse@tsa.org.au Not in Australia or New Zealand? TSA is a founding member of Tuberous Sclerosis Complex International, a worldwide association of TSC organisations. The TSCi website contains a directory of TSC organisations around the world www.tscinternational.org 2 Reach Out OCTOBER 2019 ISSUE 110
TSA News Editorial Teresa Llewellyn-Evans Welcome to the October 2019 issue of Reach Out. This issue highlights the importance of connections. My son David had Hunter syndrome or Mucopolysaccharidosis type 2 (MPS II) and some of my closest friendships have come from a shared experience of MPS and with those who supported us on our journey. You too might make lasting connections with like-minded people by engaging with the TSC community. Tuberous Sclerosis Australia (TSA) was established in 1981 as a volunteer organisation to connect families living with tuberous sclerosis complex (TSC). And today TSA still works to connect, inform and empower people affected by TSC as we work towards a cure for TSC. A diagnosis of tuberous sclerosis can be very isolating. Connecting with others can provide support and help break down this feeling of isolation. Debbie Crosby describes it in the following way in her president’s report on page 4: “…connections with others…are so vitally important when facing the challenges of life with TSC…it often helps me remember that my family is not the only one going through these challenges.” Connecting is important at all stages of life. Read about our first ever TSC Connect event for adults living with TSC held in Brisbane in May and Penny McKee’s reflection on this event on pages 8-9. Members of our TSC community can also connect through our closed Facebook group, which is only open to those affected by TSC. Find out more on page 9. TSA’s new nurse service will make connecting to the support and information you need even easier. Kim will be able to support you with information, links to practical support and help you to live well with TSC. Read more about the service and Kim on pages 6-7. Our Celebrations section highlights the many ways our TSC community connected for TSC Global Awareness Day on 15 May this year. Read more about pyjama days in Tasmania, morning teas in Victoria, dinners in Perth and online Facebook campaigns, as well as many people taking selfies wearing their wave tattoos on pages 14-15. Our fundraising snapshot highlights some of the wonderful ways our TSC community connects to raise much needed funds for TSA including entertainment evenings, lunches, appeals, grants, memberships, TSC Hero events and more (see pages 22-23). Connecting with other rare disease and patient organisations to share expertise and knowledge is also important. Jackie, our new General Manager, describes two recent events where TSA connected with 100 charities across Australia at the inaugural Australian Patient Organisation Network (APON) Conference in Sydney, and with 25 international TSC patient associations at the TSC International Research Conference in Toronto. Read more about this on page 16. And, of course, we will continue to connect you to the latest local and international TSC research. You will find this on pages 17-20. Enjoy! Reach Out Official Journal of Tuberous Sclerosis Australia, Inc. 18 Central Rd, Beverly Hills NSW 2209 Telephone: 1300 733 435 Website: www.tsa.org.au Email: info@tsa.org.au ABN 20 681 174 734 Incorporation no. Y 07116-42 Registered Charity CC25313 Reach Out Editor: Teresa Llewellyn-Evans Disclaimer The opinions expressed in this journal are those of the authors and are not official pronouncements of TSA Inc. Permission Permission must be sought from the authors or publishers to reproduce in any way articles or information contained in this journal. Once permission is received the source must be acknowledged. 3
Page 1: Reach Out OCTOBER 2019 ISSUE 110 TS
Page 5 and 6: TSA News Six Months In Jackie Gambr
Page 7 and 8: TSA News Welcome Kim We are delight
Page 9 and 10: TSA News The Value of Connections P
Page 11 and 12: TSA News Financial Statements Balan
Page 13 and 14: TSA News The Impact of Your Support
Page 15 and 16: Events Rachel’s birthday Rachel f
Page 17 and 18: Research EPISTOP: International Res
Page 19 and 20: Research Gaps in surveillance In 20
Page 21 and 22: TSA Research Awards Congratulations
Page 23 and 24: Fundraising Meet our TSC Heroes NIB

Reach Out October 2019

Create successful ePaper yourself

Delete template?

Save as template?