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IAS Charitable Cause...

The IAS National Committee has chosen the XLP Research Trust as its charity for 2011 and the West Midlands Branch has chosen two important charities for this year.

XLP Research Trust

X-linked lymphoproliferative syndrome (XLP), which is also known as Duncan’s syndrome, is a rare always fatal disease that affects only boys. To date only about 100 families and 400+ boys have been diagnosed worldwide. It is likely, however, that there are many more cases where the correct diagnosis has not been made.

XLP can have many symptoms including: severe glandular fever, cancer of the blood (lymphoma) and inability to fight off infections and sometimes severe anaemia. 70% of individuals with XLP die by the age of 10 years without any treatment. The cause of the condition was only found in 1998 so there is still a lot to learn.

The best ‘prevention’ is regular top ups of anti-viral medicines, immunoglobulin therapy or steroids – but these are not a cure. Today the only possible cure is a bone marrow transplant – in effect replacing the faulty immune system.

70% of individuals with XLP die by the age of 10 years without any treatment. However, as we are learning more about the disease we are identifying adults with milder forms of the condition and with advances in genetics a potential cure may now only be a few years away.

Founded in 2005, the XLP Research Trust exists to:

• 1. Promote and fund research into the cause, management, symptoms and cure for XLP
• 2. Provide a point of contact and support for those families affected by XLP
• 3. Raise the awareness of XLP amongst the medical profession and the general public

http://www.xlpresearchtrust.org   “Funding Medical Research into this Silent Killer”

Charity No: 1111075

West Midlands 2011 Chosen Charities 

By:  Eleanor Deeley

The chosen charities for the IAS West Midlands Branch in 2011 are The Multiple Sclerosis Resource Centre (MSRC) and The Grace Research Fund.  Both charities have great meaning for local West Midland’s members and both charities are looking to the future as to how things can be improved for sick and premature babies and MS sufferers.  They also both work at a grass roots level but also have national impact.

http://www.msrc.co.uk 

The Multiple Sclerosis Resource Centre (MSRC) is a proactive and innovative charity, passionately committed to supporting anyone affected by Multiple Sclerosis through access to unbiased information and advice. The approach is to encourage individuals to make choices that are appropriate to their daily lives, empowering them to maximise their potential.

http://www.graceresearchfund.org/

The Grace Research Fund was set up by Coventry residents Tracy and Simon Hayes, in memory of their daughter Grace who was born 14 weeks early at Walsgrave Hospital, Coventry. She weighed only 1lb and at five months went home on oxygen. Unfortunately, due to her lung condition and extreme prematurity she developed pulmonary hypertension and died in Birmingham Children's Hospital aged nine months.

Tracy and Simon established the Grace Research Fund to finance and support research into improving the wellbeing of babies and their families in Coventry and Warwickshire and in some cases, the findings of projects supported have impacted neonatal care nationally.

IAS West Midlands members aim to raise funds wherever they can.  A key fund-raising date in Birmingham will be the West Midlands IAS Summer BBQ which will also play host to a charity auction and the event of the year, the West Midlands IAS Christmas Party where there is always some crowd participation required whether it is a bucking bronco or a surfboard ride! (the dates for both events will be announced soon).  There are also a number of sporting fixtures including Rugby and Cricket where we hope to raise more funds for both worthy charities.

For more information please contact: Eleanor Deeley 0121 627 5552  eleanor.deeley@cbre.com