My daughter Megan is getting worse every day and up to now all I could do was watch and wait, there is NO cure.

As a father and a parent, it is unbearable. But I can’t just not do anything; I can’t make it all better for my little girl, but what I can do is support vital research to work towards finding a cure – for FA.

I’m asking you today to help us do this.

Meg is 15. She was diagnosed with Friedreich’s ataxia (FA) just over a year ago, and is already dependent on a wheelchair. She has now been told that her ataxia is far more aggressive than was previously suggested, and she’ll need to be fully aided and to use a fully automated wheelchair within the next year. There is no cure for ataxia: the only guarantee with FA is that tomorrow will be ever so slightly worse than today; there’s no way to stop it.

FA is a rare inherited disease that causes nervous-system damage, impaired muscle coordination with the first symptom usually being difficulty walking. Over the next 10 or 20 years the ataxia will gradually worsen, spreading to the arms and the trunk. Other symptoms include a loss of tendon reflexes, especially in the knees and ankles, which will disable a person with ataxia’s ability to walk over time.

We thought we had 20 years ...this has all happened to Meg in under a year. Slowness and slurring of speech is now starting, progressively getting worse. Many individuals 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.

THERE IS NO CURE, this is inevitable. Please help me say NO I don’t accept it.

Meg is not only going through everything that a teenager goes through, but she must also deal with this. She has arranged a couple of awesome Tea Party fundraisers to help afford what she needs and to support Ataxia UK; although her new symptoms (loss of mobility and full use of upper limbs, coordination and speech etc.) seem to be popping up monthly, she stays positive and focused on being a normal young lady.

Why we need your support

Ataxia research is very encouraging with some real  breakthroughs, such as animal studies that show  ataxic symptoms being reversible if caught early. An  FA-specific research project is underway that  also looks promising – and it needs funding.

Ataxia UK is working with the University of  Bristol and FARA (Friedreich's Ataxia Research  Alliance) on an exciting new 18-month project,  studying stem cell mobilising drug as a potential  treatment for FA (Granulocyte colony stimulating factor or GCSF). The study, held at the University of Bristol, builds on previous ataxia research undertaken by Dr Alastair Wilkins that tested bone marrow stem cells as a treatment for Friedreich’s ataxia (FA). Dr Wilkins’ research indicated that bone marrow stem cells not only protect nerve cells, but help to repair the nervous system.

The University of Bristol researchers now believe that increasing the circulation of the body’s own stem cells is a promising approach for therapeutic success. Half of the funds are being met by FARA, and Ataxia UK will be funding the remaining £29,000 to complete the project.

Our aim

Megan will qualify for this trial on her 18th birthday. Until then, funding is needed for this research and 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.

We want to raise the £29,000 to fund the FA trial at the University of Bristol. I want to support this work, find a cure and have Megan take part in these trials if she can. I will do anything to make this happen and I hope you can help me get there before it’s too late.

How you can help

Join our team for the 3 Day EPIC

I am organising a three-day EPIC Sportif from 18-20 September 2018: a bike ride from London to Mt Snowdon in North Wales, followed by a climb up to the summit. That’s 250 miles on a bike and a 3000ft assent to the summit of Mount Snowdon in just three days. We’re building a team of 30 to 40 people to take part.

This is a fully supported ride, with all routes, twin-room accommodation, meals, transfers and a guide for our assent supplied, plus an end-of-event party and transport via mini buses back to London. We’re asking everyone who takes part to raise £600 each and Ataxia UK will offer guidance and support to help you hit your target.

This is the most unforgettable epic sportif event of the year and we’re all training not just to achieve this huge journey, but to support ataxia research that could change Meg’s, and many others’ futures forever. With your support, we can.

Email me now for more details at [email protected] 

Make a donation

Help us support this crucial research by making a donation below.

Corporate support

There are lots of ways that your company could be involved. They can be a sponsor and perhaps cover one of the costs of the ride, or employees could take part in the ride or another of Ataxia UK's events. Both greatly contribute to their Corporate Social Responsibility (CSR) whilst supporting the cause. 

Tell others about what we’re doing

Help us to spread the word about what we’re doing and why.  Tell your colleagues about and ask for 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.

Contact Rebecca at Ataxia UK via [email protected] for more information.