The Access Foundation Supports Fanconi Hope with £10,000 Grant
The Access Foundation has awarded a grant of £10,000 to Fanconi Hope, a national charity which helps and supports the individuals and families affected by Fanconi Anaemia in the UK.
Fanconi Anaemia (FA) is a rare, inherited, life-limiting genetic condition causing bone marrow failure and cancers. It is currently incurable, and most patients undergo bone marrow transplantation between the ages of 10 and 20. FA patients are highly susceptible to head, neck and gynaecological cancers, which leads to an average life expectancy of around 30 years.
Fanconi Hope was set up in 2008 by three parents of children with FA, who wanted to fund research into this very rare disease, engender consistent best-practice treatment across the UK and to provide much-needed support to affected families through the provision of information and improved family contact.
The grant from The Access Foundation will help provide funding for a family conference and social weekend to support individuals and families affected by FA.
“The grant from The Access Foundation is going to make a huge difference to the FA community as it will go towards the next Fanconi Hope Conference and Social Weekend, which will give families and people with FA an opportunity to get together, learn and have fun.”
The event will enable families affected by this rare condition to get together for the first time since before the pandemic. With a full programme of outdoor activities for children, adults will be free to engage with each other, attend information sessions and connect with healthcare professionals.
People will come to the conference to learn, but importantly the event will create an opportunity for families to get together socially to help overcome the overwhelming sense of isolation experienced by many, from having such a rare and devastating condition.
Emma Smith, mother of a 9 year old child with FA said:
“My daughter Megan was diagnosed with this rare, life limiting genetic disorder in July 2019. Three months later, my sister-in-law Jemma, Megan and I were invited to the Fanconi Hope Conference and Social Weekend.
Megan’s diagnosis was still very recent; however, the conference was an amazing opportunity for us to talk to FA specialists and doctors, soak up lots of valuable information and meet other FA families going through the same emotions. The weekend was jam-packed with seminars and activities for all the family, including rock climbing and a campfire.
The grant from The Access Foundation is going to make a huge difference to the FA community as it will go towards the next Fanconi Hope Conference and Social Weekend, which will give families and people with FA an opportunity to get together, learn and have fun.
Fundraising has been really challenging over the last few years so we’re extremely grateful for the generous grant received - it really has exceeded all our expectations.”
