2012 CHARITY FUND RAISING BALL
TO BE HELD AT THE HOLIDAY INN WEST PETERBOROUGH
16/NOV/2012
£55 PER TICKET
TABLE OF 10+ discounted to £50 per TICKET
**** MONTHLY ****
FUND RAISING RAFFLE HELD AT
PETERBOROUGH
GREY HOUND STADIUM
ttp://www.peterboroughtoday.co.uk/news/local/charity_s_8_500_cash_boost_from_raffle_1_2216427
THE OLYMPIAN BALL NOV 2011
£10,000 RAISED IN 2011
CAN WE BEAT THIS IN 2012!!
Monies to be donated to
Great Ormond Street
For The Research Into This Condition.
Connor and his Mum presenting a cheque
THANK YOU TO ANYONE WHO
HELPED / CONTRIBUTED / DONATED
TOWARDS OUR AIMS - FUNDING RESEARCH INTO THE SYNDROME.
Our Running Total
(including 2011's donation)
will be £58,500
IF YOU WANT TO HELP PLEASE CONTACT SUE or RACHEL :
Sue on 07894253931 Rachel on 07944939740
jkilby585@aol.com info@swankyrags.co.uk
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 of The Shwachman clinic at GOSH tries to attend our charity ball every year and gives a speech to our guests
Our ball is 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:
ttp://www.peterboroughtoday.co.uk/news/local/charity_s_8_500_cash_boost_from_raffle_1_2216427
http://www.marrowfailure.cancer.gov/SD.html
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.
THANK YOU FOR VISITING US
A FEW MORE PHOTOS FROM OUR FUND RAISING YEARS
