|Lisa Steadman, Chair, Trustee|
15 Year Old Severe Haemophilia A Boy With Inhibitors
I have a 15 year old son who has Severe Haemophilia A with inhibitors. I love being part of this community. The bravery of our children and parents never ceases to amaze me, whether it be facing an unexpected diagnosis, dealing with bleeds, undergoing surgery, learning to inject your child, letting them go off to school, standing back and letting them become independant, there is always a challenge to face. There are so many stages families go through to ensure a safe and happy life for their children that, I really wanted to try and bring those families together. I want to help create the opportunities to meet and have some fun, share some stories and experience and, show our mutual respect for one another in all the challenges we overcome.
| Kelly Bellamy, Trustee |
Kelly has worked with the haemophilia community for over 13 years in a professional capacity through her
role in medical education, and is excited to be able to bring this experience to LFWBD in a more formal role
| Sarah West, Treasurer, Trustee|
1 Year Old Severe Haemophilia A Boy
My one year old son has severe haemophilia A, and I've always known I was a carrier, but my father sadly died when I was much younger so I've never really seen what the day to day reality of haemophilia is. It feels like we are just starting on our journey, and LFWBD has been such an amazing community as we've done that. Already it has been invaluable to be able to talk to families further along the road than us, to gather knowledge and learn from other people's experiences but also just to be able to chat with people who understand! I'm joining the team in the hope that I can help towards making sure the group can reach as many families as possible and continue to offer priceless support and encouragement to our community.
|Anna Harris, Trustee and Secretary|
3 Year Old Severe Haemophilia B Boy
I'm Anna from Essex; my youngest son was diagnosed as having Haemophilia Severe B Type in 2017 and we were soon navigating an unknown world of bleeding disorders. The community of families walking the walk ahead of us was so supportive. I wanted to become a Trustee for a few reasons, namely as I was proud to be part of this group and saw how needed the group was in its first year. I want to give something back to the community. Without having other families' understanding and support since diagnosis, we would have been lost as a family. I want to ensure the group continues to be a supportive and family focused place where all our children, those with bleeding disorders and their super siblings, feel heard. I've worked with children for years as a social worker and hope to bring my skill set and the importance of the voice of the child to the group.
|Natalie Jarman, Committee Members|
11 Year Old Severe Haemophilia A Boy
I decided to join the committee for local families with bleeding disorders because our son Ollie has severe Haemophilia a, and I think that it would be wonderful to help bring families like our own together. So that we are able to not only share experiences with each other, but also learn from others too.
|Michelle Bibby, Fund Raising Coordinator|
9 Year Old Severe Haemophilia A Boy
I'm so happy to be a part of this amazing group.
|Christina Burgess, Committee Member|
European Haemophilia Consortium Inhibitor Working Group Member
Director of Haemophilia and Bleeding Disorders Counselling Association (HBDCA)
Christina originally trained as a counsellor with British airways many years ago so the importance of psychological
support has always been a passion for her. She became Head of Services at The Haemophilia Society in 2014, and,
during the four years she was there, devised and developed many of the services of support that are there to
the present day. During this time, she became completely committed to the bleeding disorder community,
recognising what a special and unique community it is. Christina left the Society in October, 2017.
She decided, having realised that there was a lack of effective, accessible, FREE psychological support
available for people with a bleeding disorder and their families and carers, to set up HBDCA (Haemophilia
and Bleeding Disorders Counselling Association).
|Gemma Gardner, LFWBD Committee (Database and Website)|
Women's Working Group, Haemophilia Society
DEEP (Disease Experience Expert Panel) Novo Nordisk
Hi, I'm Gemma and live in North Oxfordshire, a little way from the rest of the lovely LWFBD team. With there being little in the way of support
in our local area, LFWBD's have been amazing and I've met so many lovely friends through the group.