HMSA NEW PATRON APPOINTED

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Re: HMSA NEW PATRON APPOINTED

Postby Englishgremlin1 » Wed Dec 17, 2008 9:05 pm

Excellent news! He could have a voice in the right places.
If we can crack joints we can crack systems

Male diagnosed with Hypermobile EDS November 06.
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Re: HMSA NEW PATRON APPOINTED

Postby CathyE » Thu Feb 26, 2009 12:01 am

Update!

I met with Norman yesterday, I explained all about HMS and the HMSA - we discussed various things including the need for physiotherapists and the medical profession in general becoming more aware and better able to treat those of us diagnosed with HMS.

He responded there and then by dictating a letter to Alan Johnson (Secretary of State for Health) - In the letter Norman described HMS and the HMSA and what our aims are - he also spoke of our plans to be able to help train physiotherapists and medical students on HMS - he requested a meeting with Alan or one of his ministers in the Dept of Health - with the aim of discussing funding for the HMSA to be able to do this!

A copy of the letter was awaiting in my inbox upon my 3 hr trip home!

I was extremely impressed with Norman, about how interested he was in us and our condition - and also of how pro-active he was in trying to help us achieve something that I have been keen on doing for a very long time!

Norman also attended the Rare Disease Launch Day this afternoon - where we met again - it shows how interested he is in our condition and other disorders that aren't so much in the public eye!

I feel really positive about how things are going for the HMSA and I'm looking forward to what happens next.

Cathy
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Re: HMSA NEW PATRON APPOINTED

Postby Eloise » Thu Feb 26, 2009 12:04 am

Excellent - I hope some good comes of all his (and yours) hard work :)
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Re: HMSA NEW PATRON APPOINTED

Postby Frankles » Thu Feb 26, 2009 12:07 am

That is just fantastic! You are doing a wonderful job on our behalf :bday:
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Re: HMSA NEW PATRON APPOINTED

Postby gila » Thu Feb 26, 2009 10:52 am

thank you Cathy! :clap:
and yep, impressed by Norman getting straight away active.
and as for "our plans to be able to help train physiotherapists and medical students on HMS"- WOW! that would be truly wonderful!!!!!!
xxg
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Re: HMSA NEW PATRON APPOINTED

Postby Englishgremlin1 » Thu Feb 26, 2009 10:52 am

This is what we need
If we can crack joints we can crack systems

Male diagnosed with Hypermobile EDS November 06.
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Re: HMSA NEW PATRON APPOINTED

Postby barkingmad » Thu Feb 26, 2009 11:16 am

As I said before, well done Cathy :clap:

I am so excited about all this!
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Re: HMSA NEW PATRON APPOINTED

Postby hannah » Thu Feb 26, 2009 9:12 pm

Wow! This really is fantastic! Thank you for all the work that must have gone on behind the scenes too :)
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Re: HMSA NEW PATRON APPOINTED

Postby naama » Fri Feb 27, 2009 5:12 pm

Excellent news! Glad to hear he's prepared to help raise awareness.
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Re: HMSA NEW PATRON APPOINTED

Postby dibley » Fri Feb 27, 2009 6:53 pm

Well done Cathy. It must have been really hard to travel all that way to meet up with a stranger. What a brilliant thing it is to have an MP on side. Thanks for doing this.

Sue
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Re: HMSA NEW PATRON APPOINTED

Postby cara09 » Fri Feb 27, 2009 9:20 pm

Hi Cathy,

It sounds like it went really well with Norman Lamb. It looks like he will be a great Patron for this charity. Well done.

Cara :)
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Re: HMSA NEW PATRON APPOINTED

Postby rebeccagraceson » Mon Mar 02, 2009 6:30 pm

This is really brilliant news!

Becky
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Re: HMSA NEW PATRON APPOINTED

Postby Rosie » Sun Apr 10, 2011 5:39 pm

Hi all

Just watching the news, and Norman Lamb has threatened to resign over the NHS reforms, Telegraph artyicle here
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
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Re: HMSA NEW PATRON APPOINTED

Postby steve100 » Mon May 02, 2011 6:43 am

moving to norfolk seems like a very good one for me -had m.e.for 25yrs and worsening hmsa-hv found the health service and support groups very good indeed and now norman lamb is in the picture i hope things can only get better-onwards and upwards!
helen birkett
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