Hi, we’re Alan and Ben. We have haemophilia and we are Haemophilia Foundation youth leaders.
Alan Dursun and Ben Inglis organised and led the Youth Program for the Conference, which included activities like rock climbing, a youth lunch and dinner and a booth at the Conference where youth delegates paired up to share their stories on a Stick Your Story board. They also produced a video that was showcased at the Conference Dinner on What do you want people to know about living with a bleeding disorder?
The Conference itself had a special session aimed at young people, chaired by Haemophilia Nurse, Jamie Chase, called Youth – my amazing bleed story! – with a panel discussing some tall stories about bleeds from young people, and voting on whether they were true or fake.
Ben and Alan talked to HFA about the aims of the Youth Program and the satisfaction they had at seeing the youth delegates connecting and enjoying their time together.
Some of the youth delegates shared their personal highlights with us.
What was the aim of the Youth Program at the Conference?
Alan
The youth program was created to bring the young people together, build their confidence and give them a comfortable space to express themselves. The aim was to help them connect, learn from each other and start stepping into their own leadership roles. We mixed fun activities with moments where they could share, reflect and work as a team, and the goal was for them to walk away feeling more empowered and more aware of their potential in the bleeding disorders community.
My highlight was seeing how quickly the group bonded. Once they relaxed, the energy completely shifted and they started supporting each other and opening up. Watching them work on the video activity was the standout. They were creative, honest and confident, and it showed how strong this next generation is. Seeing that level of growth in such a short time was genuinely the best part of the whole program.
Ben
I always find the youth programming for haemophilia events to be so important for the future success of our organisations. From very early in our childhoods, there are those among us in the community who have built incredible supportive connections with others who perfectly understand the struggles and situations we deal with. That’s a powerful thing.
Ensuring that the passion we learn in our early years continues to be encouraged and nurtured as we become the adults we will be for the rest of our lives is so important for the future of this community we all love.
With this in mind, my main goal for youth programming is empowering our youth members to want to be a part of building future programs for themselves.
To reach this goal, we aimed to design a program that would create community within our group of youth attendees, and show how rewarding and fun being part of our youth programs can be.
Through our efforts as organisers, and of course the efforts of all our youth attendees, I think we were quite successful in reaching this goal.
While my personal favourite activity was the rock climbing, without a doubt my highlight was seeing the youth attendees seeking each other out and spending time together throughout the conference, regardless of whether they’d first met as kids, or earlier that day.
If the youth we have coming up through our community are as caring, driven and fun-loving as those we had at the national conference this year, then I have no doubt that the bleeding disorders community will be in good hands for years to come.
Youth delegates share their highlights
‘My highlight was meeting new friendly faces who have had the courage to join the community, learning more about haemophilia that I wasn’t aware of, learning what and how far our research has come to.’
‘My highlight was hearing everyone’s different experiences dealing with haemophilia and also being able to relate to others.’
‘My highlights of the youth program at the conference to start with is definitely meeting new people – making connections with people who are in the same position and the same age bracket as you helps so much with dealing with the disorder.
Having the youth program at the conference made it ten times more enjoyable.
Having the rock climbing was a great ice breaker and really brought everyone together straight away, which really helped everyone build a connection with each other.
I also really enjoyed being able to have a room just for the youth. I found it made our group more personal and we could have some down time and discuss on how the seminars went.
Overall, I’d say having the youth group at the conference was an awesome experience.’
‘I really enjoyed the HFA youth program. I got to meet people from all across Australia, try outdoor rock climbing, and even go out for a night on the town after the conference dinner. It was a great mix of activities and a really fun couple of days’
