Tuesday March 21st – Cluster Headache Awareness Day.
There are two events planned for Cluster Headache Awareness Day; a gathering at the House of Commons organised by the Headache Centre, Guy's and St Thomas' NHS Trust and hosted by Mr Jim Fitzpatrick MP, chair of the All Party Parliamentary Group on Headache Disorders. Amongst the speakers will be Trustee Elizabeth Kelly speaking on the work of OUCH(UK) in supporting sufferers and their families, and member Carolyn Matheson will give an overview of life with cluster headache. NB all places for this event have been taken up.
There will also be a Cluster Headache Awareness Evening on 21st March 2017, at the Walton Neurological...
Tuesday March 21st – Cluster Headache Awareness Day.
This may be the first time that not just a TAC sufferer can do something positive to make the DWP work benefit system better, but their families and friends also. It is a HUGE opportunity for every member and their families to do something really positive and we strongly urge you to take part in this consultation.
OUCH has representation, through Headache UK, in the All Party Parliamentary Group on Headache Disorders. At a recent meeting in the Commons, our newly appointed representative, trustee Elizabeth Kelly, addressed the meeting on her experiences as a disabled person with the DWP and other government departments. It was a powerful and well-received address. Elizabeth was approached by the DWP representative at the meeting...Read More
Finding the cause of cluster headache is a vital step towards finding the cure for this disease and The Institute of Neurology are undertaking a new study into the genetic basis of cluster headache. All they need from you is some details of your family CH history and a small sample of blood, but this study is special in that non-sufferer family members can get involved too. Read the details below and see if you and your family qualify to volunteer for this very important study.
Finding the Cause of Cluster Headache
We currently know very little about the cause of Cluster Headache, however, we do know that this condition can run in families. This suggests a potential genetic basis...Read More
OUCH (UK) is delighted to welcome two new volunteers to the OUCH helpline, Emma McAteer and Linda Duddy, both of whom hale from Scotland. They have successfully completed their helpline training and Helpline Manager, Liz Kelly, has instituted a new means of training by using group video calling on Skype. Welcome to the team Emma and Linda!
OUCH(UK) are pleased to announce, in conjunction with The European Headache Federation and European Headache Alliance, we will be promoting the second Cluster Headache Awareness Day. This will be held on 21st March 2017.
We welcome fundraising efforts by our members for this day, and we have created a Cluster Headache Awareness Day poster for you to print at home, and up in your workplace, local GPs, and in your community.
We are of course happy for you to download and print your own awareness posters. they are located in our downloads section under handouts for friends, family and colleagues.
If you are planning to promote Cluster Headache Awareness Day in your local area and need further information, please email...Read More
The scope of the trial has been widened to include chronic sufferers of CH as well as ECH sufferers. Volunteers of either status are urgently needed to move forward this important drug trial. For more details, please contact email@example.com stating whether you are ECH OR CCH for the criteria of each trial. If you do one thing for CH this year, make it participation in this trial.
Following the sad death of our chairman, Mike Pollock, an extraordinary general meeting of the Trustees was held to elect a new chairman. OUCH is delighted to announce that our patron, Professor Peter Goadsby, accepted nomination as chairman and was elected unanimously. The Professor is now based at King's College Hospital and will be the keynote speaker at our London meeting in November. He has been a staunch supporter of OUCH since its inception in 2001. In 2001, one of his clinics was running late and several patients started talking to one another and discovered they all had cluster headache. They then met up online and OUCH was formed in 2001 and became a registered charity in 2002; OUCH owes its existence to our new chairman...Read More
If you've ever said you wanted to do something to help sufferers and you are a sufferer yourself, well here is your opportunity!
Study of CGRPss in Episodic Cluster Headache
Professor Goadsby at King's College Hospital, London is looking for volunteers for an important study of CGRPs [calcitonin gene related peptides] in episodic cluster headache sufferers. The criteria for participants for the CGRP TRIAL have been amended:
- The participant needs to be an episodic or chronic sufferer; if episodic within first two to three weeks of cycle; can be at very start of the cycle but need to have 8 weeks of cycle left after enrolling to this trial; chronic sufferers,...
If you use the Sun Pharmaceuticals sumatriptan injections, please be aware that we have been informed their production site for the injections is being shut down for maintenance and the injections will not now be available until early 2016.
However, we have been informed that Glaxo Smith Kline who also manufacture sumatriptan injections have sufficient supplies to meet the extra demand.
If your prescription specifically states 'Sun injections' just ask your GP to amend it to 'sumatriptan injections' and the GSK ones can be substituted.
Any questions or queries on the above, please e-mail firstname.lastname@example.org or call the...
We are delighted to announce our next meeting will take place on October 19th in London in the Governance Hall at the world renowned St Thomas' Hospital by kind permission of Guys & St Thomas Hospitals Trust, Dr Adnan Al-Kaisy Clinical lead and Consultant in Pain and Neuromodulation and Dr Giorgio Lambru, consultant neurologist of St Thomas' Hospital Headache Team. This will be a very special meeting as we have some topline speakers.
Speakers so far confirmed are:
Professor Peter Goadsby, our patron and director of the Welcome Trust Neuroscience research facility at Kings College Hospital;
Dr Giorgio Lambru, Consultant Neurologist and Lead of the Headache...
To celebrate turning 60, I thought it would be the perfect reason to run one final marathon.
Over the past few weeks, my friends and running pals have supported me in my training. In order to help motivate me over the course of the 26.2 miles, I would appreciate any contibutions towards my target.
My chosen charity is the Organisation for the Understanding of Cluster Headaches (OUCH UK). This fantastic charity has provided continuous support for both Bev and I as well as all of the other...Read More