2010 CHARITY FUND RAISING BALL
TO BE HELD AT THE HOLIDAY INN WEST PETERBOROUGH
12/NOV/2010
£55 PER TICKET
TABLE OF 10+ discounted to £50 per TICKET
WIN A KIA PICANTO
RAFFLE TO BE DRAWN AT THE BALL ON FRIDAY 12th NOVEMBER 2010
TICKETS CAN BE PURCHASED AT PETERBOROUGH GREY HOUND STADIUM
MEDIA COVERAGE
£9,000 RAISED IN 2009
All of which was donated to Great Ormond Street For The Research Into This Condition.
WE REALLY NEED TO BEAT THIS FOR 2010!!
Connor and his Mum presenting a cheque
Our Running Total is Now £40,000 in Donations to Great Ormond Street.
2010 Fund Raising Has Started - If You Are Interested In Helping Or Coming To The Ball please CONTACT:
Sue on 07894253931 jkilby585@aol.com
Rachel on 07944939740 r.carberry@ntlworld.com
THANKY YOU TO ANYONE WHO HELPED / CONTRIBUTED / DONATED TOWARDS OUR AIMS - FUNDING RESEARCH INTO THE SYNDROME.WHAT IS SHWACHMAN-DIAMOND SYNDROME?
Shwachman-Diamond Syndrome (SDS) is genetic and an inherited condition. It is a very rare, complex disease because it is a multi system disorder affecting particularly the pancreas, bone marrow and skeleton. Next to Cystic Fibrosis, it is the most common cause of pancreatic insufficiency in children.
The pancreas fails to produce the enzymes essential to digest food properly. Because of the pancreatic dysfunction (malabsorption), the child does not absorb enough nutrients, most commonly the fat-soluble vitamins, to grow and develop normally. Oral enzyme replacement therapy helps these children to digest their food, up to 30 tablets a day, but many still need to take special vitamin supplements. Improving nutritional status does not necessarily improve the growth of children with Shwachman-Diamond Syndrome.
The bone marrow, where blood cells are produced, is also affected in Shwachman-Diamond Syndrome. White blood cells, which fight infection, are most commonly affected. Neutropenia is the most common hematological abnormality in SDS, though all blood cell lines may be affected. Anemia and blood clotting problems are also common in SDS patients. Because of the bone marrow dysfunction, these children are at a greater risk of developing life-threatening infections. Shwachman-Diamond Syndrome is considered to be a bone marrow failure syndrome, because up to 30% of these children will develop leukemia or aplastic anemia.
ABOUT US
The Connor Wright Shwachman -Diamond Project is a non-profit organisation set up by ordinary people, with ordinary lives, doing ordinary jobs in order to bring awareness and raise funds for a very UNORDINARY condition –Shwachman-Diamond Syndrome.
OUR GOALS are to campaign for and support research towards a cure and improve medical management of symptoms as well as raise awareness of the Syndrome within the medical profession, support agencies and the general public.
We have supported Great Ormond Street Hospital Children's Charity as they are leading the campaign into the research . Great Ormond Street has opened a special purpose fund for the money we donate to go direct into and used solely for research purposes into Shwachman Diamond Syndrome ,this fund is called:
THE GASTROENTEROLOGY FUND
Dr Shah head of The Shwachman clinic at GOSH attends our charity ball every year and gives a speech to our guests Our ball is also attended by Dr Gatens and his team– from Addenbrookes who is head of the blood clinic (cancer) .
Rare diseases are difficult to diagnose and many doctors are unfamiliar with their symptoms. Consequently rare diseases often go undiagnosed, or misdiagnosed, for long periods and when faced with a rare disease diagnosis, parents are often anxious and scared. It’s the not knowing, and nothing can be more painful than watching a child suffer whilst feeling powerless to help. Fear and uncertainty for their future invades their mind as they watch them face another medical challenge in their short life!!!
FOR MORE INFORMATION ON SHWACHMAN DIAMOND SYNDROME PLEASE CLICK ON THE LINKS BELOW:
http://emedicine.medscape.com/article/958476-overview
http://www.marrowfailure.cancer.gov/SD.html
THANK YOU FOR VISITING US.
