Running for RP

Retinitis pigmentosa is something very close to the group’s heart as a few years ago a friend of the groups was diagnosed with the disease. It is a condition which we had not heard of previously but something which is now playing a big part in our lives.

What is Retinitis Pigmentosa

Retinitis pigmentosa (RP) is the name given to a group of inherited diseases of the retina that all lead to a gradual progressive reduction in vision. Difficulties with night vision and peripheral vision are the first things that are noticed. Later, reading vision and colour vision are affected. The age at which symptoms start is variable. The rate at which vision deteriorates is variable but is generally very slow with changes occurring over years rather than months. In approximately half of all cases (50 to 60%) there are other family members with RP.

Who are the BRPS

The BRPS was founded in 1975 by Lynda Cantor and a number of other people with retinitis pigmentosa (RP). The group was concerned at the lack of knowledge about RP in the medical profession, and the lack of support for people with RP, and decided to do something about it.

Over the years BRPS has evolved into a respected medical research charity and a nationwide organisation supporting some 2700 members and ‘friends’.

The BRPS exists to do two things; their primary objective is to find a cure for RP.  They do this by raising funds for medical and scientific research and using this money to stimulate and support cutting edge projects ranging from basic science to clinical trials of potential treatments. As a result of their work they have stimulated significant breakthroughs. There is a long way to go, but they believe that a cure will be found, the timescale will be determined by the quality and quantity of research undertaken. In turn this is related, of course, to the amount of money invested.information and support services to people with RP, their families, and indeed anyone with an interest in the disease. They deliver information through their website, by producing Newsletters for members, and through a range of leaflets and booklets. They provide support through a network of 20 branches linking people together socially and in times of need. Their helpline (telephone and email) brings information and support together, providing assistance on everything from basic facts and day-to-day problems to coping with major stress at difficult times.

Secondly, they provide

Our Aims

Over the next year our group aims to hold a number of fundraising events to raise awareness and money for the BRPS. We hope to achieve a greater goal of helping the people who suffer from the disease, and their families.

At the moment there is a great stigma attached to RP. We hope to help overcome this by raising awareness. We hope the events we hold will provide a greater understanding of the disease.

With your help we can raise money for the Society to continue their pioneering research and their support group.

We have set up a team to run the Great Manchester Race and are arranging a team for the Llanelli 10. We have been very successful recruiting people to the cause. In addition we would like to organise a number of events that the public at large can attend.

The group has arraned a Cabaret to be held in Llanelli and we hope to host a number of other events to raise money and awareness.

We would also like to arrange for the coming months:

• A childrens fun run
• Dinner and Entertainment  
• Quiz Night
• 7 asides rugby tournament
• An open Mic Night

And hopefully many other events.

How You Can Help

We would welcome your support and help in making our aims a reality.

If you have a venue which could host an event we would love to hear from you. I am sure we could pull in the punters and make some money for you.

Raise money for us by putting a money box on your counter for loose change.

If you would like to support us by providing raffle prizes this would be a great help. In return for your contribution we would be more than happy to promote your business by listing you on posters, flyers and given you a big mention at events and on the website. This could be a great opportunity for you to boost your businesses profile and also help with a great cause.  

Are you able to take part in an event? Maybe you can help us by taking part in the Cabaret Show or the Open Mic Night, come along and showcase your talent or possibly you can provide entertainment at any of the other events.

But the biggest help of all will be your support, please help to raise awareness by spreading the word.

If you are able to help, please contact us on laurie@running4rp.com

Thank you for your support.