2009 CHARITY FUND RAISING BALL TO BE HELD AT THE HOLIDAY INN WEST PETERBOROUGH 30/10/09 £50 PER TICKET TABLE OF 10'S AVAILABLE WIN A KIA PICANTO RAFFLE TO BE DRAWN AT THE BALL ON FRIDAY OCT 30TH 2009 £12,000 RAISED IN 2008 All of which was donated to Great Ormond Street For The Research Into This Condition. WE REALLY NEED TO BEAT THIS FOR 2009!! Connor and his Mum presenting a cheque 
Our Running Total is Now £40,000 in Donations to Great Ormond Street. 2009 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. | 
