Thursday, 21 June 2012

Alstrom syndrome... can you ride a tandem?

I am writing this
piece for the blog because I am in complete amazement that one of my clients who has Alstrom Syndrome, is registered blind and is an AMAZING person... is also going to add to his list of accomplishments a bike ride from Torbay to Birmingham! I'm adding this to my blog in the hopes that you may be able to donate to his worthy charitable cause.

In his words, this is the story...

You may or may not know that 6 years ago I was diagnosed with Alström Syndrome, a condition witch can mean any or all of the following, Sight loss, Hearing loss, Obesity, Diabetes, Dilated cardiomyopathy, Kidney disease and failure, and many other associated illnesses. Thankfully none of us get the whole lot, but all of us have several of the symptoms.

At diagnosis I was made aware that there was an organisation who maybe able to help me as the doctors new little about it. The organisation is Alstrom Syndrome UK, who have supported me ever since.

Shortly after becoming a member of the charity, I was invited onto the board of directors, where I've served to try and help other like me ever since. There aren't many people diagnosed worldwide, so much of the work is about learning more about the condition, and trying to raise awareness so that more children will be diagnosed early so they don't have to live to adulthood with many health problems that could have been helped by early intervention.

One of the things I've learnt is that families and patients with complex health conditions rarely have the ability or time to do much to support others, because they are often fighting to get their child or family member some equal right, be it in school or society at large. They draw knowledge and support from each other, but often understandably don't have energy or time to do much more. This can often mean that the charity has to help support families financially as well as emotionally and medically. We try to help people get respite breaks, get activity breaks for patients, as activity often means exercise, and with the expensive equipment needed often to live with sensory loss and other physical disabilities.

With all this in mind, I tried to think what I could do to help a little more than with what I usually do. My idea came when the multidisciplinary clinics for adults were being moved from Torbay to Birmingham. I thought I love cycling, I have a tandem how about doing a cycle ride from one hospital to the other to both raise money, and awareness for the charity and it's moving the health care to a much bigger hospital that could continue research, and also get faster treatment for those seriously in need.

That idea has become reality. as on Friday 22 June a group of us made up of patients, friends, doctors and scientists will begin a 4 day cycle from Torbay hospital in Torquay to the new Queen Elizabeth hospital in Birmingham arriving Monday 25th June. we'll cycle just over 200 miles in an attempt to raise both money and awareness for this small charity.

So please if you are able to help by sponsoring or donating at we would be very grateful.

I'm hoping you'll make it so much harder for me to get off the bike and into a support vehicle when I feel exhausted, as I want to cycle the full distance. It's knowing both what an achievement that would be for me, and that I'll be paying back all those who've supported me over the years to reach a point where I even feel I can attempt something so huge.

We will provide a carefully selected support worker for your exact needs, and no need for you to worry about recruitment, job descriptions, training or dealing with the tax man – the list is endless - we do it all for you as the employer. We listen to your needs, and you tell us what you are looking for… and we do the rest.

If you would like further information on any of the above topics please get in touch!
Tel: 01625 583957 (office) or 07774 230168 (mobile), or