Delighted to be patron for Joseph’s Goal Charity

I recently met with some constituents who’s son, Joseph has a rate genetic disorder, Non-Ketotic Hyperglycinemia. When he was born, his parents were told he was unlikely to live long. But, beating all the odds, Joseph is now 4 and has started school at the fantastic Kingsland School in my constituency.

When I joined him at his school he was having a great time with his new classmates. Kingsland is such a great school and I’ve always felt privileged to have it in my constituency.

Very little research has been done into Joseph’s condition and his parents have set up a charity and website to raise both awareness and money for research in this area.

I’m delighted that they’ve asked me to be a patron for the Joseph’s Goal Charity and will be doing what I can to raise the profile of the disorder. I’ve already contacted the Chief Medical Officer to see what can be done to support UK research into this disorder.

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Posted September 7th, 2013 by Ed