Author: Lisa Steadman

  • A Fantastic Day Out at Hobbledown Farm

    We had an absolutely brilliant day out at Hobbledown Farm in Epsom with our amazing Local Families with Bleeding Disorders community! A huge thank you to everyone who came along.

    The farm is a great venue to bring our families together with children of all ages.  Families were able to explore everything from animals and play areas to the fantastic indoor spaces. For many of our children, it was a day of new experiences — climbing, feeding animals and running free in a safe and supportive environment.

    As always, one of the highlights is lunch together.  This is for many of us, a rare chance for families to sit, chat, and connect. The tipi provided a great venue for this.  These shared moments can be just as meaningful as the activities themselves. It is always so heartwarming to see new friendships forming, children finding playmates who understand their world, and parents sharing stories and support.

    We’d like to say a huge and very special thank you to Anna, Marie, and Steph especially for organising the day.  Your time, effort, and care meant everything ran so smoothly. These events don’t just happen.  They are made possible by the hard work and attention to detail of our volunteers.  Without them giving their time, these events simply would not be possible or affordable.  Similarly, without the fundraising efforts of our community, we would not be able to host such events.

    At LFWBD, we believe that these social events are about more than just a day out. They are about building a community, breaking down isolation, and showing our children (and ourselves) that we’re not alone.

    We can’t wait for the next event – our annual Christmas lights bus tour on a traditional Routemaster bus.  We hope to see even more of you there. Saturday 6th December – bus leaves at 4pm.

    Thank you again to everyone who came and made the day so memorable!

  • We Did It! LFWBD Wins National Lottery Funding

    We are absolutely thrilled to share some incredible news, Local Families with Bleeding Disorders has been awarded a grant from the National Lottery Community Fund! This is the first major grant we’ve ever applied for, and to have been successful is a huge moment for our charity.

    This funding is a game-changer for us. It means that over the next few years, we can continue to run the much-loved events that bring our community together from summer picnics to festive celebrations, fun days out and more. These events are the heart of what we do, giving families the chance to connect, support each other, and have fun in a safe and understanding environment.

    The grant will also help us cover essential running costs – the behind-the-scenes things that keep everything going smoothly. This support brings us long-term stability and helps us plan ahead with confidence.

    A huge thank you goes to our brilliant trustee Sandra, who led the grant application process with such care and dedication. It was truly a team effort, with all of our trustees and committee members contributing ideas and energy to bring the vision to life.

    And of course, an enormous thank you to the National Lottery and all its players your support will make a real, lasting difference to the lives of families living with bleeding disorders.

    We can’t wait to get started on the exciting years ahead. Watch this space!

    #NationalLottery.

  • Finding Our Voice Through Poetry: A Creative Journey with Local Families with Bleeding Disorders

    As Chair of Local Families with Bleeding Disorders, I’m thrilled to share the powerful experience we recently had through a unique poetry course. This initiative brought together individuals living with bleeding disorders to explore their thoughts, feelings, and experiences through the power of creative writing.

    This project was largely thanks to Dr. Rich Gorman, Senior Research Fellow at Brighton Medical School, who successfully secured funding for this project. Rich is a passionate advocate for using creative writing to give voice to lived experiences, and we are deeply grateful for his support.

    The course was led by Dawn Gorman (no relation to Rich!), an award-winning poet, arts practitioner, and journalist. Dawn skillfully guided us through the art of poetry, teaching techniques that helped us unlock deeply personal and emotional stories.

    Under Dawn’s expert mentorship, we created some truly moving and powerful poems. The sessions were not only creative but deeply therapeutic. At times, we confronted challenging and painful memories, but the safe and supportive environment helped us navigate those emotions together.

    This course has been a journey of connection, courage, and creativity. It was an honour to work with such a wonderful group of ladies, each bringing their own voice and strength to the process.

    We hope to publish our poetry later this year and share our journey through an episode of the Haemnet podcast.

    This has been an unforgettable and empowering experience that we shall treasure.

  • Celebrating Mark Salmen – A True LFWBD Hero

    As Chair of Local Families with Bleeding Disorders (LFWBD), I want to take a moment to celebrate one of our longest-standing members – Mark Salmen. Mark, along with his wife and two sons, has been with us since the charity began six years ago. Their journey has included major challenges, from an unexpected diagnosis to navigating needle phobia – and through it all, they have shown extraordinary strength and resilience.

    We’ve been proud to support them during the toughest times, and in return, they have become a huge inspiration to our community. Most recently, Mark took on the London to Brighton Bike Ride and raised over £1,000 for LFWBD.

    Mark, we think you’re amazing. Without people like you, we couldn’t run the events that bring our families together. Thank you for your dedication, generosity, and spirit. We are so lucky to have you in our LFWBD family. Well done!

  • A visit to St George’s – A Great Day with the paediatric team and patients

    I had the pleasure of visiting St George’s Hospital recently to chat with patients and families about Local Families with Bleeding Disorders (LFWBD) and the work that we do in supporting families.
    It was a really enjoyable day – great to be invited, and wonderful to meet the families and staff. There was a relaxed atmosphere, and it was a brilliant chance to spread the word about what we’ve been up to at LFWBD and what’s coming up next.
    I spoke about some of the events we’ve held recently including our annual picnic, bowling, trips to the zoo, a visit to the Tower of London, Christmas bus rides and more. We’ve had some fantastic feedback from members who’ve told us how valuable these events are for staying connected and informed. We always have a lot of fun and enjoy spending time with others who understand our journeys. Our events are enjoyable and provide valuable opportunities for connection, support and friendship.
    It was also a good opportunity to let people know about what’s ahead – including our summer picnic with a circus skills entertainer which is always a hit. We warmly invite more families to join us, whether they have been newly diagnosed or have been navigating life with a bleeding disorder for years.
    Thanks again to the team at St George’s for having me – it was great to get out there, meet people, and share the exciting news and updates about the work we’re doing. If you’d like to know more or get involved, we’d love to hear from you! Please feel free to contact us at info@bleeding-disorders.co.uk

  • World Haemophilia Day: Recognising Resilience, Raising Voices

    World Haemophilia Day: Recognising Resilience, Raising Voices

    April 17th marks World Haemophilia Day — a time to reflect, raise awareness, and stand united with everyone affected by haemophilia and other bleeding disorders. As Chair of Local Families with Bleeding Disorders (LFWBD), I know firsthand how vital it is to acknowledge the varied experiences of individuals and families living with these lifelong conditions — across generations and around the globe.

    This year’s theme, “Women and Girls Bleed Too,” confronts a long-overlooked truth: too many women live with undiagnosed or misdiagnosed bleeding disorders. Their symptoms are often dismissed, misunderstood, or minimised. Today is a day to shine a light on their stories and push for greater recognition, earlier diagnosis, and equitable care.  

    Living with a bleeding disorder isn’t easy — it takes resilience, adaptability, and constant vigilance. From managing daily routines to navigating emergencies, the impact is felt across every aspect of life. And yet, within our community, there is so much strength. At LFWBD, we are proud to support our members — not just today, but every day.

    We also pause to thank the dedicated medical professionals who work tirelessly to support patients and families. Your expertise, empathy, and commitment are paramount to being able to live the best life we can with bleeding disorders.

    Today is a day for visibility, for advocacy, and for solidarity. To everyone living with a bleeding disorder — especially the women and girls whose voices are finally being heard — we see you, we stand with you, and we will continue to fight for better awareness and better care.

  • Reflections on Our Strategy Day & AGM

    Reflections on Our Strategy Day & AGM

    By Lisa Steadman, Chair of Local Families with Bleeding Disorders

    Last weekend, we held our Annual Strategy Day and AGM.  This is the one time of the year the committee come together, in person, without being at an actual event.  It is a really important time for us to spend together and support one another in our various roles within the charity.  

    I wanted to take a moment to say a huge thank you to all our wonderful committee members and trustees. Everyone involved gives their time as volunteers.  I’m constantly inspired by the passion and dedication each of them bring to our charity.  So much of the really important work that we do happens behind the scenes, and it doesn’t go unnoticed.

    During the day, we spent time reflecting on everything we’ve achieved over the past year—and there’s a lot to be proud of. We also looked ahead, making exciting plans for how we’ll continue to grow and support our members in the year to come.  We have several events planned and some ideas for fundraising to ensure we can continue to support our members. 

    A special highlight was welcoming our new admin manager, who we’re thrilled to have on board. With their help, we’re confident we can build even stronger foundations and focus even more on what matters most: supporting families living with bleeding disorders.

    We’re always open to new ideas and voices—so if you’re a member with thoughts, suggestions, or a desire to get more involved, please don’t hesitate to get in touch at info@bleeding-disorders.co.uk. 

    Thank you again to everyone who helps make this community so special.

  • A Mentor’s Guidance in Challenging Times

    When I founded Local Families with Bleeding Disorders in 2019, I was driven by a passion to support those in my community who, like me, understood the challenges of living with a bleeding disorder. However, despite my determination, I had no prior experience in running a charity. The responsibility was overwhelming, and I quickly realised I needed guidance to navigate the complexities of establishing and leading an organisation.

    That’s when I discovered the mentor scheme run by Findacure (now Beacon for Rare Diseases). I applied, hoping to find someone who could provide insight and support. I was incredibly  fortunate and was paired with the remarkable Jenny Ousbey of Ovid Health—a leader with deep expertise in healthcare communications and advocacy.

    Our mentorship was set to begin with an in-person meeting with other mentors and mentees, but fate had other plans. Just a week before we were due to meet, the world changed as we entered lockdown amid the COVID-19 pandemic. Instead of sitting across from each other at the planned workshop, we adapted and met online. Despite the physical distance (both London based but not allowed to meet in person), Jenny’s mentorship was just as impactful as if we had been in the same room.

    She provided invaluable advice that helped me prioritise what truly mattered in establishing the charity. Her guidance gave me clarity and confidence at a time when everything felt uncertain. Jenny’s support helped me navigate challenges that initially seemed insurmountable, and for that, I will always be grateful.

    I also want to extend my heartfelt thanks to Beacon for Rare Diseases for their incredible mentor scheme. It was a lifeline during a time of uncertainty, and I wholeheartedly encourage others in similar situations to seek support through their program.

    Thank you, Jenny, for your time, wisdom, and generosity. Your mentorship has had a lasting impact, not just on me, but on the families our charity serves every day.

  • The Power of Shared Stories: Supporting Families with Bleeding Disorders

    Living with a bleeding disorder can be challenging, but no family should have to navigate it alone. At Local Families with Bleeding Disorders, we see firsthand how much of a difference it makes when families share their experiences. By opening up about their journeys, families help others understand the realities of these conditions and offer invaluable support to those who are newly diagnosed or struggling to adjust.

    One of the most powerful ways to break down misconceptions and create a sense of community is through storytelling. When families speak about the daily realities of managing conditions like haemophilia or von Willebrand disease, they not only raise awareness but also empower others to face their own challenges with greater confidence. These personal accounts provide comfort, practical advice, and the reassurance that no one is alone in this journey.

    The recent article by Haemnet’s Kathryn Jenner on severe haemophilia A (Haemnet Blog) is a great example of how storytelling can make a difference. Kathryn has worked extensively with families to bring their experiences to light, and we are incredibly grateful for her expertise. Her ability to capture and share these voices ensures that more people understand the impact of bleeding disorders beyond the medical perspective.

    To all the families who have shared their stories—thank you. Your courage and openness help create a supportive and informed community where no one feels isolated. By continuing to speak up, you are making a real difference in the lives of others facing similar challenges.

    If you are willing to share your story, please reach out. Together, we can ensure that every family living with a bleeding disorder feels heard, supported, and empowered.