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CH Awareness Day

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#1 Tue, 21/03/2017 - 09:18
Val
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CH Awareness Day

Well its here!  And we've had a huge response from members on Facebook, with videos, photographs and stories of how CH has affected their lives - lets see some on here.

This afternoon Trustee Liz Kelly  and member Carolyn Matheson speak at a meeting at the House of Commons.  Organised by St Thomas' Hospital Headache team, and Mr Jim Fitzpatrick MP, chair of the All Party Parliamentary  Group on Headache disorders.   Liz will speak about the work of OUCH with sufferers and supporters and Carolyn will speak on a sufferer's experience of CH and its effects on her life.

 

Then this evening at the Walton Neurological Centre, Dr Nick Silver hosts a meeting at which Trustee Andrya Barnett will speak on OUCH's work with sufferers and supporters.  Vice Chair of OUCH, Colin Allen and Trustees Dorothy Chapman, Chloe Bailey will also be present to talk to sufferers.

There is also a radio broadcast BBC, not sure which radio channel it will be, but Dr Giorgio Lambru of St Thomas' Hospital Headache team and sufferer Katie Clarke-Day will be taking part

So come on what are you going to do for CH awareness today?

Val.

Tue, 21/03/2017 - 09:28
zanycheff
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trying to get a radio interview set up and wearing my under the hat wig and hat all day Smile

 

Tue, 21/03/2017 - 20:41
Val
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Hi all

To finish off the day, we received a cheque for £500 today from the Domville Lodge 4647 in Warrington.  This is one of several donations we have received from Domville Lodge who have so generously supported us with donations and is just one example of the support Freemasons give to charities.

We thank them and particularly their Worshipful Master, whose daughter is a sufferer of CH.  He asked that the Lodge forward the donation to us and by the most happy coincidence it arrived on Awareness Day!

With donations such as this it enables us to continue to run our helpline, maintain our website and produce information and literature on CH and other severe headache conditions.

Once again, our grateful thanks to the Domville Lodge.

Val.

 

Thu, 23/03/2017 - 17:19
Mr Git
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Where do I go to find out what happened on Awareness Day?

Am I in the wrong place?? Scratch one-s head

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Fri, 24/03/2017 - 18:03
Dorothy
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The fantastic Katie Clark-Day and Giorgio Lambru spoke to BBC Radio Nottingham on the morning of Awareness Day about Cluster Headaches. You can listen here: http://www.bbc.co.uk/programmes/p04vf3ck around 01:14:50. Thank you both!

Fri, 24/03/2017 - 18:17
Dorothy
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Cluster Headache in the European Parliament. Trustee Scott Bruce started the day early to represent OUCH (UK)

 

Miguel Angel Pascual AEPAC Spain. Talks to delegates about living with Cluster Headaches

 

Ms Kalina Tyminski President of AFCAVF (France) tells her story about CH and surgery and the life impacts.

Professor Paulo Martelletti talks to the delegates about equal access to treatments for CH across Europe. Where some countries still don't offer Drugs used to help stop individual attacks are called abortive agents or acute treatments


">abortive treatments.

Sabine Verheyen MEP talks about creating a common set of guidelines covering Cluster Headache across Europe.


 

Fri, 24/03/2017 - 18:36
Dorothy
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Jim Fitzpatrick MP opening the Cluster Headache Awareness Day in Houses of Parliament London.

Carolyn Matheson speaking about Cluster Headaches in the Churchill Rooms Westminster.

Trustee Liz Kelly telling the delegates about OUCH (UK) and our work.

Professor Paulo Martelletti. Also visiting more than one Parliament in one day along with Trustee Scott Bruce. This time giving his talk to those gathered in Westminster.

 

Dr Giorgio Lambru talking about Cluster Headache and his fast track access clinic for Cluster patients.

Our Final speaker in London. Anna Andreou talks about research into cluster headaches.

 

 

The Speakers

 

The final message from Jim Fitzpatrick was to speak to your MP to ensure that Cluster Headache is funded at research level.

Fri, 24/03/2017 - 18:57
Dorothy
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Dr Nicholas Silver speaking about cluster headaches at the Walton Centre, Liverpool.

 

 

Trustee Andrya Barnett speaking at the Walton Centre about OUCH (UK), its beginnings and how the charity supports sufferers and their families.

 

It was great to catch up with trustees Andrya Barnett and Chloe Bailey at the Walton. I met some more of our CH family members, which I always look forward to - some new faces and a few more familiar ones that I've known only online for years. 

Dr Silver's talk was excellent - it was streamed live to the facebook group by trustee Chloe. 

 

Mon, 27/03/2017 - 20:40
Scott
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There were 2 common themes brought up at both parliaments.

Urge your Member of Parliament to attend and sign up to the All Party Parliamentary Group on Headache Disorders Chaired by Jim Fitzpatrick MP

and write to your MP and MEP to ensure that Headache research is funded at national and international level.

 

 

 

 

Mon, 27/03/2017 - 20:42 (Reply to #9)
Scott
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Sorry Sean I was only allowed my phone into either Parliament on the day and unfortunately had to fly out to Dublin immediately afterwards.

 

 

 

Tue, 28/03/2017 - 17:47
Mr Git
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Thanks for the update Dorothy and Scott, and well done and thank you to all those who gave up their time to take part.

I will write to my MP this week.

Thanks

Sean

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Tue, 28/03/2017 - 21:39
zanycheff
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yes well done all Smile sorry I couldn't attend but had to stay here Sad

a suggestion if i may about writing to MPs would a sort of mock up letter to download /use as a template so that the important facts get covered and if poss some links to add that would promote our aims and so all who decide to go further get sent to the right sources/resources ?

to be honest I'm pants at writing formally and respectfully and need some guidance Wink

zany

Tue, 28/03/2017 - 22:37
Scott
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Ian,

we shall task the team with a formal letter draft, for our MPs.

 

 

Tue, 28/03/2017 - 23:02
zanycheff
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thank you Scott Smile

i thought it would help get the major points to raise across better Smile

Ian

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