Story
Thank you very much for visiting my fundraising page.
When the CDLS Foundation UK put out a request for London marathon runners I was very pleased and extremely excited to be given this opportunity to support the charity in such a world class event- I can't believe that I will be treading the same ground (even if a few hours behind!) as the likes of Paula Radcliffe!! I have spent the last three years doing my PhD with a team of researchers working with people with rare genetic syndromes including Cornelia de Lange syndrome. It is this experience that has led me to want to support the CDLS Foundation UK in any way I can.
The Cornelia de Lange syndrome Foundation UK is a support group for people with CDLS, their parents, carers and families. CDLS causes people to suffer from a huge number of difficulties in their every day lives. People often have a weak muscle around the top of their stomach, meaning that they can be in constant pain becuase of acid coming up from the tummy. This constant pain is particularly challenging for people with CDLS because they often find it difficult to communicate to others that they are in pain. This is just one example of the difficulties that people with CDLS regularly face.
I have been truly inspired by the commitment, optimism and enthusiasm of all of the families of people with CDLS that I have met. Because the syndrome is rare, families often have to fight to get access to appropriate health, medical and education services. It is very difficult for professionals working with people with CDLS (and I include myself in this description) to understand the true extent of the difficulties faced by people with CDLS and their families. This is why the CDLS Foundation UK is so important. It is a support group for families of people with CDLS that is run by the families of people with CDLS. So all of the support provided is given exactly where, when and how it is needed.
The CDLS Foundation UK provide support to people with CDLS and their families in many important ways. Regular family meetings help to provide parents and carers with the most up to date information about how best to manage some of the difficulties associated with the syndrome. Social support outings help to introduce individuals with CDLS to new friends and new social experiences. Global conferences help to increase knowledge of the syndrome on a large scale and encourage communication and collaboration between professionals working with people with CDLS. The foundation also produces a regular news letter to keep people continually up to date with recent research and relevant issues.
Please click here for more information on The CDLS Foundation UK.
Please visit my homepage for more information on my involvement in working with individuals with rare genetic syndromes.
If you would like to sponsor me to run the London Marathon, donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to sponsor me: Cornelia de Lange Syndrome Foundation UK gets your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.
I really appreciate your support.
Kate
When the CDLS Foundation UK put out a request for London marathon runners I was very pleased and extremely excited to be given this opportunity to support the charity in such a world class event- I can't believe that I will be treading the same ground (even if a few hours behind!) as the likes of Paula Radcliffe!! I have spent the last three years doing my PhD with a team of researchers working with people with rare genetic syndromes including Cornelia de Lange syndrome. It is this experience that has led me to want to support the CDLS Foundation UK in any way I can.
The Cornelia de Lange syndrome Foundation UK is a support group for people with CDLS, their parents, carers and families. CDLS causes people to suffer from a huge number of difficulties in their every day lives. People often have a weak muscle around the top of their stomach, meaning that they can be in constant pain becuase of acid coming up from the tummy. This constant pain is particularly challenging for people with CDLS because they often find it difficult to communicate to others that they are in pain. This is just one example of the difficulties that people with CDLS regularly face.
I have been truly inspired by the commitment, optimism and enthusiasm of all of the families of people with CDLS that I have met. Because the syndrome is rare, families often have to fight to get access to appropriate health, medical and education services. It is very difficult for professionals working with people with CDLS (and I include myself in this description) to understand the true extent of the difficulties faced by people with CDLS and their families. This is why the CDLS Foundation UK is so important. It is a support group for families of people with CDLS that is run by the families of people with CDLS. So all of the support provided is given exactly where, when and how it is needed.
The CDLS Foundation UK provide support to people with CDLS and their families in many important ways. Regular family meetings help to provide parents and carers with the most up to date information about how best to manage some of the difficulties associated with the syndrome. Social support outings help to introduce individuals with CDLS to new friends and new social experiences. Global conferences help to increase knowledge of the syndrome on a large scale and encourage communication and collaboration between professionals working with people with CDLS. The foundation also produces a regular news letter to keep people continually up to date with recent research and relevant issues.
Please click here for more information on The CDLS Foundation UK.
Please visit my homepage for more information on my involvement in working with individuals with rare genetic syndromes.
If you would like to sponsor me to run the London Marathon, donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to sponsor me: Cornelia de Lange Syndrome Foundation UK gets your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.
I really appreciate your support.
Kate