What is Fanconi Anaemia?
FA is a rare, cancer-predisposing disorder affecting about 150 or more families in the UK manifested by:
- A variable presence of congenital anomalies in up to 70% of cases
- Progressive bone marrow failure in childhood usually leading to haematopoietic stem cell transplantation (80% chance)
- A predisposition to acute myeloid leukaemia (10% chance), and in particular, oropharyngeal/anogenital squamous cell carcinoma in early adulthood (over 50% in post-bone marrow transplant survivors).
Now that's the scientific bit out of the way. What do I want? And how am I going to get it?
Research into the Fanconi pathway gets very little funding or support from our Government, even though it does not just affect these 150 families mentioned previously. The Fanconi pathway is relevant to everybody. It provides a new future target for drugs in the treatment of cancers in general. Finding out how to block the Fanconi pathway will likely make chemotherapy treatments more effective for all.
I want to raise money to help towards the funding of such research, not just for the fanconi anaemia sufferers, but for your future, your family's future and the future of your loved ones.
On Mothering weekend 2012 I will be attempting to cycle from Lakeside Doncaster to Lakeside at Lake Windermere, some 110+ miles (hence the name Lake to the Lakes, inventive, no?). I will be doing this over the course of the entire weekend with one overnight stay.
Now, 110+ miles may not seem much like I am the Forrest Gump of the cycling world, but add to this that a good 40% of my journey is through the Yorkshire Dales (i.e quite flipping hilly!), it will be taking place during lent so as always I will have given up chocolate and as such will have no morale boosts, and that I have the fitness levels of a fatigued sloth, and you can appreciate that for me this is my own personal Everest!
You can even follow the progress of my training and eventual killer cycle through my blog: http://laketothelakes.blogspot.com/
So, what am I asking from you?
I'm asking for your genoristy when making a donation. I'm asking you to consider what the money is going towards. So often people donate huge amounts to well recognised charities and forget about the ones that can also make a difference. Fanconi Hope UK is one of these charities. This charity is run by families affected by Fanconi Anaemia, and the clinicians that have a desire and interest in our future.
I'm asking on a personal level, please donate whatever you can. As the sibling of a Fanconi Anaemia sufferer I will be the first to tell you about the terrible time these poor children and young adults have. They are robbed of a childhood we all take for granted, their short lives come with many restrictions, not just from the disease, but from the parents who fear the consequences of their actions. These victims spend their whole lives in and out of hospital, attending clinic after clinic, facing intrusive tests and solemn news. There are so many ways in which you can help, please help me to ensure that no other mother, father, sibling, grandparent or any other loved one has to fear the worst, face the fact they're fighting a losing battle or let go of someone too, too soon. Myself and my family have already been through the emotional rollercoaster that comes with having a family member diagnosed with Fanconi Anaemia, but together you and I can ensure other family's have hope - Fanconi Hope.
So, that's the sales pitch over! Now dig deep please and sponsor me anything you can! You can also help Fanconi sufferers in other ways:
Join the bone marrow register (particularly if you're male aged between 18-30) at: http://www.anthonynolan.org/What-you-can-do/save-a-life/Online-application.aspx
Or give blood, many Fanconi sufferers require blood transfusions in the early stages. Register online at http://www.blood.co.uk
To find out more about Fanconi Hope UK please go to http://www.fanconi.org.uk/
