What they do The Charity makes FUN accessible to children with Magical Days Out providing tickets and contributing towards a travel grant for families to enjoy their day at a Merlin Entertainments’ attraction. Who can apply? Children aged 2-18 facing the challenges of serious illness, plus immediate family members. How to apply? https://www.merlinsmagicwand.org/apply-1/
What they do Dreamflight is a registered UK charity that changes young lives through taking children with a serious illness or disability on the holiday of a lifetime to Orlando, Florida. Once a year, 192 deserving children from all over the UK, accompanied by a team of medical carers, board a chartered Boeing 747 and
What they do The Ellen MacArthur Cancer Trust is a registered charity set up with its main aim to help children and young adults to regain their confidence through sailing. The four-day trips are for young people who have finished treatment for cancer and FA patients, and who are sailing with the trust for the
We welcome two new faces into the charity, Suzanne Lloyd, as PA to the Chair, and Katie Carr, as Head of Communications. Suzanne Lloyd is Personal Assistant?to the Chair of Fanconi Hope, working diligently behind the scenes, ensuring all administrative tasks are up to date. As the primary point of contact for all fundraising events,
With the move of Bob Dalgleish, the Chair of Fanconi Hope to Scotland we were obliged to register with the Scottish Charity Regulator as well as with the Charities Commission for England and Wales. We are now successfully dual registered!
The Together for Healthy Marrow Alliance brings together six small but mighty charities that support people living with rare conditions that include bone marrow failure as a symptom. The conditions include Aplastic Anaemia, Dyskeratosis Congenita, Paroxysmal Nocturnal Haemaglobinuria, Shwachman Diamond Syndrome, Fanconi Anaemia and a range of Congenital Anaemias. As the Alliance we undertook a
A significant grant from private individuals is enabling Fanconi Hope to fund a pilot study in Manchester to characterise the oral microbiome of individuals with Fanconi Anaemia. The oral microbiome is a complex community of bacteria and other micro-organisms living in your mouth, playing a crucial role in digestion and protecting against disease. Ethanol-producing bacteria
On May 24th 2024 the FA Europe Network held the first ever pan-European scientific meeting to promote collaboration on Fanconi Anaemia between European countries. This was the culmination of efforts initiated by Fanconi Hope and the Dutch FA Support Group (the Workgroup of the VKN) with the help of an International grant and strong support
Meet Louise Dalgleish, photographer, drag king, club night organiser, retail worker, enjoyer of life. “I do a lot” says Louise, underplaying the fact she currently has 6 jobs. These include part time positions in retail and hospitality which give her the independence to do the freelance work she really cares about: raising awareness around
What’s it like to feel like the only adult with a rare condition in a room of young families? What can parents of children and adults with the condition learn from each other? I met up with Stacy and Shabz for a chat about what living with Fanconi anaemia is like for them. Fanconi
