Subject: Cavernoma Alliance UK - June 2011 e-mailshot
Dear %%salutation%%
Welcome to our June e-mailshot bringing you the latest news about Cavernoma Alliance UK.
Cavernoma Alliance UK hereby gives notice of the convening of a special general meeting of the Board of Trustees of Cavernoma Alliance UK to vote upon the amendment of section 7(4) of the charities Constitution document which currently states: “The Trustees must keep a register of the names and addresses of the members which must be made available to any member upon request” to “The Trustees must keep a register of the names and addresses of the members”. We also intend to re-elect the Trustees Frank Gent, Alison Garwood, Ahmed Toma and Ian Stuart in keeping with a further requirement of the Constitution.
This special general meeting will take place at the National Hospital for Neurology and Neurosurgery, noon, on 29th July 2011 in the Old Boardroom. As a Member of Cavernoma Alliance UK you are entitled to attend this meeting should you wish although, there is no need or obligation to do so. It is a matter of procedure that notice of special general meetings be given to all Cavernoma Alliance UK members and Trustees.
The new format of the 5th International Cavernoma Alliance UK Forum on Saturday, 4th June met with members' approval. Our keynote speaker, Mr. Mohsen Javadpour, spoke at 9:30am followed by members' workshops. This order gave the workshops greater prominence and members remained for the two further speakers in the afternoon. 83 people attended with participants from Spain, Sweden, America and Southern Ireland as well as from all over the UK.
We have online videos of speakers' talks:
“Cavernomas - What are they, how do they affect people, and how can they be treated?” - Mr Mohsen Javadpour MB, BCh, FRCS(SN)
– <http://www.cavernoma.org.uk/opus359.html> (1:00:41)
“Imaging cavernomas: a radiologist's view” - Dr. Matthew Adams MB BChir FRCR
– <http://www.cavernoma.org.uk/opus360.html> (46:43)
“The cognitive and emotional effects of cavernoma and their treatments” - Dr. Sarah Griffiths DClinPsy
– <http://www.cavernoma.org.uk/opus361.html> (41:29)
Earlier this year, Alison Garwood CA UK member and Charity Secretary requested the CA UK Board consider supporting her proposal to subscribe to the British Journal of Neuroscience Nursing (BJNN) subject to review after one year. The Board agreed with the proposal. Here she writes about why she made the proposal.
I have chosen the BJNN <http://www.bjnn.co.uk> as there is an abundance of pertinent (hospital and community) adult and paediatric information, covering, for example: neurological and neurosurgical conditions, treatments and management, plus legal, ethical and social issues.
Regular topics include:-
My aim is to review the editorials, comments, clinical articles, research roundup sections etc and I will be providing information on the web site in the form of a short synopsis. I hope to reach a wide adult audience with a range of interesting material, such that individuals or groups can relate to the topics, in some way that is beneficial.
The first of six reviews will be available on the website by the end of July. So … this slot is for you all. It is a very small but positive step forward in working towards meeting people's needs.
Alison Garwood
CA UK member and Charity Secretary
Former Registered Nurse
Speciality - Adult Intensive Care
(We will publish a link in the emailshot as each review becomes available.)
The International Cavernous Angioma Patient Registry is run by our sister charity the Angioma Alliance in the USA.
The Registry was created to link individuals with cavernoma to members of the research community by collecting information from individuals with cavernoma. The goal of the Registry is to facilitate discovery of a non-invasive treatment for cavernoma. Members of the Registry have the opportunity to assist in the development process as members are provided with the most up-to-date information about research studies and clinical trials seeking participants.
By creating a Registry member profile, you are helping to define the diversity of the cavernoma illness among the Angioma Alliance's worldwide members. Information provided by registered members is used to identify research studies in which individuals are eligible to participate. They will contact you about research studies; your personal information will not be shared without your permission.
For more details visit <https://angioma.patientcrossroads.org/>
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