Why We're Raising Money

Our daughter Alisha was a beautiful and very happy little girl who made the best of her short time here. She sadly passed away aged only 6 months and 22 days, on the 1st October 2001 as a result of severe Spinal Muscular Atrophy (SMA).

We're raising money for the Jennifer Trust for Spinal Muscular Atrophy (JTSMA) who supported us in 2001 when we were faced with the loss Alisha. They helped us care for her and make the best of her short but very happy life. We’d like to help them in return so they can help other families as well as funding research into the condition.

We've since been very lucky to have Emma and Freya come along, who are both free from SMA. However, the luck of the genetic dice still affect many more families each year.

Every penny raised is donated directly to the Jennifer Trust for Spinal Muscular Atrophy. There are no administration charges. There are no fees. Even our web site is provided for free.

What is Spinal Muscular Atrophy (SMA)?

• SMA is a recessive genetic neuromuscular condition.
• Causes muscle weakness and breathing problems.
• Currently there is no cure or effective treatment.
• 1 in 40 people is a carrier of the recessive gene which causes SMA. That's around 1.5 million people in the UK. SMA of some form occurs in around 1 in 6400 births.
• 80% of babies with Severe (Type 1) SMA die before their first birthday. More babies die in the UK from SMA than from any other genetic condition.
• Children and adults with SMA tend to be high academic achievers.

Full information about SMA is available from the information section of the Jennifer Trust for SMA website.

What does the Jennifer Trust for SMA do?

The Jennifer Trust for SMA is a charity which receives no government funding. Their motto is "Help for Today, Hope For Tomorrow". The JTSMA provide:

• Information, advice and support - befrienders, literature, conferences.
• Welfare grants for specialist equipment.
• Bereavement support.
• Research into both practical care management & potential treatments.
• Information & training services for health care professionals.
• These services are provided free of charge to all people who live with SMA.

The JTSMA supported us when we needed them and we know first hand what a difference that kind of support makes. We've dedicated this web site and our fundraising efforts to support them, in memory of Alisha.

Home Pictures The Route Route Map The Riders About Us Why We're Raising Money Alisha Money Raised Past fundraising Newsletter Site Map

About Us

Why We're Raising Money