The past year has been one of firsts, achievements and successes for Little Bleeders and as the Director of the Charity I couldn’t be happier with how things have been going. We wouldn’t be where we are today without the help of our volunteers, ambassadors and of course the people who provide us with funding, support and guidance like Unit 4. While our aim may be a simple one, to help young people with haemophilia and blood disorders to have the confidence to participate in sports and activities, it means the world to the young people who are now able to have fun, connect with their peers and are finding their overall health improved.
There are over 3000 young people living with haemophilia in the UK and they and their families face an everyday struggle to balance their disorder while trying to keep their child safe in world where kids just want to be kids. Families with young people who have a blood disorder are often faced with inconsistent information on the best ways to protect their children, while keeping them healthy and active. Little Bleeders is dedicated to helping young boys and girls with haemophilia have the same opportunities as their peers through organised sports and activities.
Over the past year we have been working hard to spread the message that despite haemophilia, it is important to get out and be active. One our most successful campaigns was our first ever Little Bleeders Photography Competition. We asked young people and their families who followed our work to submit their best photo of themselves living the Little Bleeder’s ethos of ‘Move more, be more”. We received images of young people participating in all kinds of sports like cricket, football, cycling, wall-climbing and gymnastics and it was wonderful to see what these young people were achieving. I have to admit, it was difficult to pick only three to claim the prizes but in our eyes they were all winners and through social media we have been giving them all the recognition they deserve.
As a result of our photography competition we were able to recruit some brilliant young ambassadors to act as role models to their peers with haemophilia. One such ambassador has been Georgia Young a 17 year old avid cyclist who has come on in leaps and bounds in her chosen sport. Georgia has been the perfect ambassador showing what can be achieved if you persevere, take the correct precautions and don’t let haemophilia hold you back. She considers Alex Dowsett, Professional Cyclist and Chairman of Little Bleeders, to be one of her heroes and takes great pride in helping him and the Little Bleeders team get our message out to young people and families all over the UK.
Georgia played a big role in our most recent fundraising event, our first annual Charity Ball. Held in London the charity event raised just under £20,000 to help us provide support for young people with blood disorders to participate in the sports and activities they love and to support more consistent personalised care across the UK. There were a number of fundraising opportunities that everyone at the event got involved in like the silent auction, our Cotton Wool Ball pillow auction that involved guests helping to fill a blood drop shaped pillow signed by Alex with cotton wool balls, a raffle and the ‘sponsored cycle ride’ that saw Georgia and our newest Trustee and youth ambassador Harry Stephens cycle the length of one of Alex’s recent races on stationary bikes.
Finally, we’ve been heavily involved in providing guidance and information to a number of publications over the past year including the recent Roche Report titled Haemophilia 180: Taking control: A better future for younger patients with haemophilia. The report outlines the importance of young people with haemophilia taking ownership of their own treatment and the role that their clinicians, family and community can play in helping with that transition. Little Bleeders Lead Clinician, Dr Daniel Hart, Consultant Haematologist and The Royal London Hospital Haemophilia Centre Trustee and myself provided our input into the report which used a series of first-hand interviews from people involved in the treatment of haemophilia including clinicians, patients, parents, carers and representatives of the Haemophilia Society.
Dr Dan Hart also provided valuable input along with Brian Colvin, former Director of the Haemophilia Centre at the Royal London Hospital and Alex Dowsett for our feature in the Guardian’s Media Planet titled, Haematologists promote ‘inclusion over exclusion’ for children. The article discusses the importance of activity and sport in the lives of young people with haemophilia and that getting children involved in activity when they are young can help promote physical strength, self-esteem and inclusion with their peers.
With the success of this past year, I am very excited for the things to come for us here at Little Bleeders. With the continued support of those who help us achieve all that we do, the sky is the limit for us and for the young people living with haemophilia in the UK.