Four highlights from the weekend
The weekend kicked off at Mount Wolseley Hotel in Carlow on a nippy clear evening on Friday the 14th of October. The Hotel was decked out for Autumn, with a lovely autumnal table set up in the lobby, replete with yellows, oranges and reds. Throughout the day, members filled the hotel. We were fully booked, with over 250 attendees. Friday evening was a time to reconnect with members and get ready for the weekend ahead.
Our October Conference was jam-packed, both for adults and young people. Here are some highlights from the weekend.
1. Personal Experiences with Different Therapies
The first session of the weekend set the tone for the interactive and informative event the Conference turned out to be. Seven members came together to give insight into their own experiences on various treatment therapies or their sons’ experiences. The session highlighted how good treatment options have become, and it was heartwarming to hear how older members are doing so much better now, with far fewer bleeds or issues than they used to have, due to their current treatment. It was particularly interesting to hear about Brian O’Mahony and Luke Pembroke’s journeys on Gene Therapy. They gave measured insight into their experiences, the good and the bad and the audience engaged with questions and comments. The discussion also highlighted differences in the younger and older members’ attitudes towards their bleeding disorder, how often they think about the disorder and the extent to which they understand it.
2. Panel Discussion on Haemophilia in Ukraine
In this session, Lidiia Obukhova, Ruslan Obukhov, Dmitry Mishustin and Vladim Lukash, with the help of the translator Daria Mironova, shared their stories with bleeding disorders in Ukraine. The session reminded us of how fortunate we are to have such advanced treatment options here in Ireland. It was lovely to hear, particularly from Lidiia, how positive her experience has been with the IHS.
3. Kids Programmes
The kids programmes were a great success, full of excitement in the form of a variety of activities from swimming to arts competitions. It was particularly special for those who were reconnecting with old friends after their families had taken a break from coming to conferences due to the pandemic. The visit from the reptile zoo was especially exciting, and some of the children were lucky (or unlucky) enough to see a boa constrictor start to shed its skin! Another highlight was Brian O’Mahony’s talk with the Youth Group about up-to-date treatment options. The group engaged inquisitively and were very interested to learn about gene therapy in particular.
4. Drumming Workshop
The Drumming Workshop was a rousing way to finish off the weekend. The kids from Cubs, Kidlink and Youth made their ways to the drumming workshop and, after scoffing down some leftover fruit from our coffee break, congregated together with their parents in a wide circle. Each person was given one of a wide variety of percussive instruments, ranging from bass drums, to bodhrans to the triangle. Leading the session was Dave, who aptly gained and held the attentions of countless children and their parents throughout the hour. It was delightful to hear how the performance came together in the end. It was a wonderful way to finish off the weekend and gave us all a good appetite for lunch before our departure that afternoon.