My daughter Megan is 16, and was diagnosed with Friedreich's ataxia (FA) 3 years ago. Every day she is getting worse. As a father and parent its heart-breaking. All l can do was watch and wait as there is NO cure.
FA is a very rare inherited disease that causes nervous-system damage, impaired muscle coordination with the first symptom usually being difficulty walking. Slowness and slurring of speech starts and progressively gets worse. Many with later stages of FA also develop hearing and vision loss as well as heart issues, and in later stages of the condition, individuals may become completely incapacitated.
We realised very quickly that Megs is far more aggressive than most meaning in this short space of time she has become dependent on a fully automated wheelchair and needs fully aided living. This should have taken 25 years, it took two.
I cannot sit by and just accept her fate, no parent, no father would. I cannot make it all better for my little girl but I refuse to do nothing, I refuse to accept this for my daughter. So, two years ago I decided to change my life and do something.
Firstly losing nearly 12 stone and getting fitter and with the support of colleagues and friends, I arranged and participated in some insane cycling events, and friends people who have followed my journey have joined along the way and arranged their own #miles4meg events and of course Meg continues to host some brilliant tea parties (the cakes are amazing!). All of this raised a lot of money to help fund research but the biggest challenges lay ahead we have to keep going and keep funding research with the hope of one day finding a cure.
We have raised in excess of £40,000 with £23,000 going directly to help fund an incredible FA research project at the University of Bristol. We await the full report, but the search for a cure has never felt closer or more possible.
BUT more research is still needed. The way to find a treatments and cures for conditions like FA to find multiple ways of attacking it. The project at Bristol is incredible, but we must keep going.
Meg is an incredible young lady, she is not only going through everything that a teenager goes through, but she must also deal with the reality of living with a currently incurable progressive condition.
The truth is unless we stop this condition and/or cure it, Meg will deteriorate and will never realise her dream, this is heart breaking.
I must help to find a cure for this incurable condition and that is my only goal. I am her Dad and I know why she has FA its genetic, and I have to live with that. I need your help to beat this - any parent would do the same. FA is destroying her life little by little every day and I will not accept this for my baby girl.
The Challenge and Our Goal
Which is why this year (while we await confirmation of the next steps for the University of Bristol project) I am aiming to raise £15,000 to help fund a complimentary research trial around nicotinamide.
5 years ago, Dr Paola Giunti headed up an ambitious clinical trial testing the effect of a form of vitamin B3 called nicotinamide in FA. The results were very positive. So much so that we are now at the stage of clinical trials to help determine if nicotinamide could be a potential treatment for FA.
This final nicotinamide clinical trial represents a significant step to finding a treatment and cure for FA. Dr Giunti said,
This is a significant moment and we are incredibly excited that there is a potential treatment for FA on the horizon.
Funding is needed for this research and for small clinical trials to continue, which we hope can defeat this truly horrific condition. I must try everything to get Megs involved in this research, or I fear FA will slowly take her body and life away from her.
I want to raise £15,000 to help fund this trial.
I will do anything to make this happen and I hope you can help fund this project before it is too late.
How you can help
You can support this crucial research by:
· Making a donation using the button above.
· Joining one of the cycling events we are taking part in, by contacting me or Ataxia UK on the details below.
· Corporate support - There are lots of ways that your company can be involved. They could be a sponsor and perhaps cover one of the costs of the ride, or employees could take part in an event. Both greatly contribute to their Corporate Social Responsibility (CSR) whilst supporting the cause.
· Tell your friends, family and colleagues about what were doing and why. Ask them to get involved or to sponsor us. The more people that know about ataxia and the research project, the closer we will get to our target.
For more information
Contact Richard Bradford:
T. 07852515039 or E. firstname.lastname@example.org
Contact Rebecca at Ataxia UK:
T. 020 020 7582 1444 or E. email@example.com