Reach Out, April 2016, isue 103

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Events 2015 Australian Tuberous Held on the 14 th and 15 th November, 2015 Australian Tuberous Sclerosis Conference brought together people with TSC, their families and healthcare professionals from around Australia to learn more about tuberous sclerosis and to connect with each other. This event builds on the success of similar large events held in conjunction with the TSC Clinic at The Sydney Children’s Hospital in 2007 and 2011. We look forward to the next large conference and all our smaller local events in between. Thank you to everyone who came together to make the weekend event so great. More than 150 paediatricians given a TSC update by Dr Thiele’s presentation at the paediatric neurology delegates in our two day family stream, including in our LAM stream co-hosted by LAM Australia In numbers Delegates from QLD, NSW, ACT, VIC, TAS, WA and New Zealand 8 My top five Jodie Conduit, whose son Logan has TSC, travelled on a TSA travel grant from Cairns to attend the family stream of the conference. We asked her to share how the conference has helped her and Logan manage his TSC. The biggest thing for me was how 1. relaxed it all was. I felt comfortable going up and saying hello to Logan’s specialists, this made me feel more at ease. It was great knowing we were all there together getting the same information. Another highlight was knowing that Logan’s TSC clinic appointment was coming up, so a lot of the information I could bring up with his team. It helped me feel a bit more on par with his doctors and more confident speaking to them. Meeting other families was wonderful. During the ‘Getting To 2. Know You’ session we were placed in groups according to which situation we were in. As a parent of a young child with TSC I was able to meet other parents in similar circumstances and it meant so much to hear I wasn’t alone in how I felt. Often, being from a remote community I do find it hard to reach out to others with TSC. Logan has always been a little bit of a mystery we are often told he is not “normal” TSC which makes me feel isolated. So it was wonderful to talk to other parents and feel part of something bigger. I have to say the highlight for me was meeting Dr Elizabeth 3. Thiele. The first day’s talk was my favourite, and really gave me a huge lift for the rest of the weekend. Logan was on mTOR inhibitor medicines for six months at this stage, and I found the explanation of how this medication was working really simple to understand. This gave me the ability to explain to my family what this medication was doing. Every one of her talks and the one on one question time were phenomenal. I really took so much away from it all. I was fortunate Reach Out health professionals in our one day medical stream, from NSW, VIC, QLD, WA and New Zealand. delegates provided with financial support through TSA travel grants during one of the lunch breaks to have a chat with Elizabeth about my son and get some of her thoughts. One of my other favourite talks was called Understanding and 4. Diagnosing TAND by Lisa Underwood. Lisa used icebergs as a way to explain having lots of small psychiatric conditions but not enough for a full diagnosis. This clicked with me as this is something we have dealt with since Logan was diagnosed. The last speech that actually caught me by surprise was from 5. Trapeze. This was a talk about teens who were about to leave the paediatric system, and how you could make their transition easier and smoother to adult care. Even though my little one is five, I found a lot of the information useful, and could see ways of implementing self-care with Logan even at this age. I am so glad I didn’t skip this session as I had originally thought of doing. APRIL 2016 ISSUE 103
Events Sclerosis Conference Interactive Medical stream builds TSC Professionals Network diverse and interesting program ensured the 35 healthcare professionals who gave A up their Saturday, learnt more about TSC and had time to discuss difficult topics and share ideas. A key theme of the program was TSC through a lifetime. This was reflected in discussion about the impact of TSC (including mTOR inhibitor medicines) on reproduction and fertility. Going well beyond the genetics of TSC, this session highlighted how important it is that these issues be considered by both paediatricians and adult doctors taking care of individuals with TSC. Focus was brought to the less well-known signs of TSC by Dr Elizabeth Thiele and the benefits of having centres of excellence that can support colleagues in other settings to protect the health of people with TSC, particularly as they age. Having Dr Lisa Henske speak about future directions in TSC research not only brought many Australian clinician researchers up to date, but it also inspired them with knowledge of the large pipeline of research that holds promise for the next big breakthrough in treating TSC. Most delegates reported the interacting with each other was the highlight of the medical stream. The panel discussions within the program as well as the chance to learn from each other in the breaks generated great ideas for how Australian doctors, nurses and researchers can collaborate within the TSC Professionals Network to improve health services for people with TSC. Our thanks to the volunteer steering committee for their hard work: Nicole (Nikky) Isbel, Nephrologist, Princess Alexandra Hospital (PAH), Brisbane and Queensland Renal Transplant Service Sean Kennedy, paediatric nephrologist at Sydney Children’s Hospital Dr Kate Riney , Paediatric Neurologist and Epileptologist, Lady Cilento Children’s Hospital Vanesa Sarkozy, Developmental Paediatrician, Sydney Children’s Hospital A/Prof Deborah Yates, Respiratory Physician in the Department of Thoracic Medicine at St Vincent’s Hospital, Sydney Satellite Events spread the word about TSC In addition to our two day conference, Dr Lisa Henske spoke to the department of thoracic medicine at St Vincent’s Hospital in Sydney about her work in LAM and TSC. Dr Elizbaeth Thiele also spoke at the paediatric neurology update at Westmead Children’s Hospital. This event was attended by more than 150 paediatricians, all provided with up to date information about tuberous sclerosis. Catch up at home Watch all the sessions from the family stream online at https://tsa.org.au/2015-conf/ This includes presentations on medical aspects of TSC and LAM, insights from TSC research, personal stories from people living with TSC and more. These videos are easy to watch and can be useful to share with extended family, friends, teachers and support staff. The conference was supported by 9
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Page 3 and 4: TSA News A Farewell Editorial David
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Page 7: Events Epilepsy and TSC Information
Page 11 and 12: Personal Stories The Rollout of the
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Page 19 and 20: Personal Stories New TSC Research a
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Page 23 and 24: Fundraising Thank You to Our Suppor

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