Weʼre raising £2,500 to #miles4meg to raise money and awareness for Friedreich’s ataxia (FA) and help Meg - a 15yr old girl with this degenerative disease
- Bath, UK
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We are raising funds to support Friedreich’s ataxia (FA), FA is a rare inherited disease that causes nervous-system damage.
This is affecting a lot of people, unfortunately its affecting a friend and colleagues family. Richard Bradford' daughter Meg is 15 years old and 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.
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.
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.
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.
How you can help
We're doing 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 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.
Make a donation - We need to raise at least £600 each to make the minimum amount. However this target needs to be smashed!
Help us support this crucial research by making a donation below.
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 firstname.lastname@example.org for more information.
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thom wickham started crowdfunding
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Aug 12, 2018
Aug 10, 2018
With love from the Scholz family from Germany!
Jul 6, 2018
Wish I could give more !! Love you lots and I can’t wait for the struggle updates! Xxx
Jul 6, 2018
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