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
opportunity to meet hundreds of other families and individuals with TSC and
make life-long connections
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
a wide range of service providers
networking opportunities and “down time” with others who share the common bond
sessions with physician experts
for the entire family
staffed day camps for children with special needs, siblings and dependent
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.
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
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.