TS World Conference - Why I am going by TS community member Carole Hagan

TS community member Carole Hagan is one of two people the TSA has sponsored to attend the TS World Conference in Dallas. Here mum-of-two Carole shares a little about herself and her involvement with TSC and the TSA before the conference kicks off this Thursday.



1. Please tell us a bit about yourself, your daughter and your experiences of TSC?

I have 2 children and my daughter was diagnosed with TSC when she was 5. She has TSC 2. I had never heard of this condition and I have spent the last 23 years trying to learn as much as possible about TSC while helping my daughter to have the best life that she can have.  She is now 28. TSC is a bit of a rollercoaster, but when life is good we have fun. 

 

2. How have you been involved with the TSA over the years?

Along with my family I have been a member of the TSA since 1999. I have had many roles within the association including a Trustee member of the Board, a member of the Support Services committee, organizing a family weekend in Butlins, a current member and once chair of the Research Committee (RESCOM) and currently the volunteer East Midlands Regional Coordinator.

 

 

3. What made you apply for the conference bursary?

I am a lay member of the TSA's research committee and it seemed a very natural thing to do! I want to keep myself informed and knowledgeable about TSC so that I can make a positive and informed contribution to TSC research.

 

4. Could tell us a bit about the conference?

The TS Alliance have organised this international conference to give attendees

·               the opportunity to meet hundreds of other families and individuals with TSC and make life-long connections

·               a better understanding of the role the TS Alliance and TSCi play in research, support and government advocacy both in the United  States and around the world

·               access a wide range of service providers

·               multiple networking opportunities and “down time” with others who share the common bond of TSC

·               Q&A sessions with physician experts

·               activities for the entire family

·               professionally staffed day camps for children with special needs, siblings and dependent adults


I cannot wait to see how such a hugely ambitious programme will come together further our knowledge of TSC.

 

5. What are you hoping to get out of the conference?

I'm looking forward to attending this international event because of the vast programme of events that are planned, the chance to hear up-to-date information about treatments and therapies for TSC and to meet other attendees and patient advocates with a broad experience of TSC. I think it will be a very inspirational event. 

I have downloaded the programme and will try to attend as much as possible but Track C: Adults  - seems particularly interesting as it is not US specific. However I’m sure attendees can choose options to include all 4 tracks:  Pediatrics, Transition, Adults & the Newly Diagnosed. I will, of course, attend all of the General Sessions. 

 

6. What sessions and events during the conference do you hope to attend?

This conference devotes an entire track to concerns faced by adults living with TSC as they make care decisions for themselves and their families. These sessions touch on management of TSC as an adult, current clinical studies and updates on new treatment options, reproductive issues, lung involvement, seizure management and mental health issues. I think this will be a very informative track to follow.

 

7. What excites you most about the conference?

It is a huge and ambitious conference set in a vibrant and modern city. I am so looking forward to meeting American families and learning about how they treat TSC in the states. Whether there are differences in treatments and approaches and I an hoping to updating myself about research and clinical trials that are happening in the US.

 

8. Anything else you’d like to share with us?

I intend to feedback as much as possible to the TSC community, it is important that such a great opportunity is shared as much as possible with the TSA's membership. I am very grateful to the TSA for funding my attendance at the conference and hope that I can disseminate as much as possible.