Myelin Project Petition for Parliament
(Strictly for UK residents please.)

While we strive to win this race against time, we're also taking immediate action for the future. On this page, you will find a download-able Petition to Parliament calling for Universal Newborn Screening for all Leukodystrophies. It is our hope that through a grass-roots movement, we can change the future for our Children to come.

Working with other Leukodystrophy support groups around the UK and around the world, such as ALD Life, Hunter's Hope and others: The British Trust for The Myelin Project has formed this petition drive. Help us gather 1 million signatures and join us when we march on Downing Street to deliever them in August 2006.

You can make a difference, now.

Please download the Petition and sign it, there is room for 20 signatures per page and you can make as many copies of the original petition only, as you like: as long as the signatures are original and not duplicated. Friends and family are welcomed to sign as well as any others you wish to gather.

Please download the attached form, sign and complete the details, then post it back to us: Download Petition

Why Bother?
Some may ask, 'why bother to test?' The answer is simple: if nothing else, it would save families and especially, 'our children' days, weeks, even months and years of being sent from specialist to specialist, enduring very painful and emotinally taxing tests.... That alone would be worth it.
However, that is only the beginning of the benefits. As stated above, early detection can lead to life saving treatments and our children can have their lives back, before they are stolen by these diseases. Also, testing would show genetic 'carriers' of these diseases and therefore, through genetic counseling, make a difference for the future.
There are over 100,000 people right here in the UK affected by demyelinating diseases - and those are just the ones we know about.
More are even believed to be affected by these diseases, but have not yet been properly diagnosed or, suffer in silence.
Please help us change the future....now.

Some International News articles on Newborn Screening:

Netherlands:
http://www.gr.nl/adviezen.php?ID=1258

United States:
Newborn Screening Endorsed by American Academy of Pediatrics

Cord Blood Saves Lives

Many more articles are available, if you would like more info, please contact our office.