The P.I.S.C.E.S. Trust - Evans Syndrome (Reg. Charity 1086546)

ABOUT US: THE P.I.S.C.E.S. TRUST - PEOPLE IN SEARCH OF A CURE FOR EVANS SYNDROME

The P.I.S.C.E.S. Trust was set up shortly after we lost our sister, Louise, to this devastating disease. She was 26 years old and ill for only 6 weeks, before she lost her fight. At the time of losing Louise, we were told that she was the 1st person in the UK to have died due to this disease. But we have found out since, sadly there have been a handful before her.
When we had to find out about this condition, we couldn't find anything, so we decided to do something about it!!

We are a volunteer organisation which is actively supporting others with this disease via a telephone & email network, provide information sheets to educate the public. We are also busy fundraising to start a Research Programme!!

We have held several events to raise public awareness, but need others to hold events on our behalf. So far we have had a Christmas Discos, Easter Auction/Disco, Sponsored Parachute Jumps & Abseils, Bungee jumps, School Reunions, Cabaret & Race Nights, as well as encouraging wacky fundraising ideas to grow to enhance media attention.

We have pubs who are sponsoring us holding events of their own.

If any of you reading this knows anyone with this condition, we would like to hear from them. We are aiming to produce a National Register of sufferers, but without your help, we will not be able to do this.

WHAT IS EVANS SYNDROME??

Evans syndrome is a rare Auto-immune disease, which allows the immune system to develop antibodies which go on to destroy the red blood cells, platelets and sometimes white blood cells. It is quite a complex disease, which requires the treatment of a Consultant Haematologist.

Symptoms may present themselves as: severe anaemia(lethargy, fatigue, breathlessness on exertion), jaundice, unusually dark urine, severe headaches & nosebleeds, clotting problems, bruising & spotty rash often found on legs.

Treatments similar to those used in cancer patients,ie, steroids and chemotherapy,eg: Prednisolone, Cyclosporine, IVIG, are tried. There is no proven treatment to prolong remission or cure this illness. In some cases a Splenectomy may be carried out.

This disease affects babies, children and adults alike. It can strike at any time. It mimics several other illnesses and is sometimes hard to diagnose because of this. Some patients may experience chronic problems followed by long remissions, while others may have devastating problems with no remissions. Some patients will have to rely on treatment for the rest of their lives. However, in others, the disease may remain active, but will be sufficiently quiet with no drugs necessary. Unfortunately, occassionally, fatalities do occur.

HOW YOU CAN HELP US

As mentioned earlier, we are a volunteer organisation, that relies heavily on donations of any kind really!! We fundraise EVERY SINGLE DAY to meet our yearly target of £30,000.
We would very much welcome any corporate sponsorship to aid our International Research campaign.

If you could provide sponsorship for our Logo Pinbadges, have any surplus equipment,eg: PC, scanner, printer, guillotine, etc; can provide yearly individual / company sponsorship; or maybe you would like to hold an event on our behalf or become a volunteer, we would like to hear from you!

We are now organising nationwide events for the coming year,
1: "PAINT THE TOWN RED" Awareness Week - 2ND MARCH - to commemmorate Lou's birthday
2: HAWKSTONE ENDURANCE CHALLENGE - SEPTEMBER
3: ZODIAC DAY - 10/11TH MAY to commemmorate our Registration Birthday

just to name a few!!

If you would like to volunteer for these events, please contact us for more details.

We are also desperately seeking active Trustees and volunteers throughout the U.K., to aid us in our Awareness and Fundraising Campaigns.

Vehicle sponsorship is required too, to enable our volunteers to travel around UK supporting families & educating public, as well as fulfiling our charity status at Wembley Arena as their charity of year 2003 & 2004. We need at least a people carrier or minibus, in return we will advertise any company who sponsors us via our main website, magnetics on vehicle and company logo on our literature.

We are the ONLY support group of this kind worldwide. We are run from home, with no hefty wage bills or overheads to contend with & completely 100% voluntary, so you can be sure your donations will go to where they are needed most. Unlike other Registered Charities, we do not have the same status as them. This is for a number of reasons, eg, either people have not heard of the condition, they already actively support a well recognised organisation, and we are quite new to the scene.

Contact: Michelle Aspinall 01925 488825;
Email: michelle_aspinall@hotmail.com; piscestrust@hotmail.com

Related Sites:

ITP ASSOCIATION
THE P.I.S.C.E.S. TRUST
UKEVENTS.NET