Tuesday, June 28, 2011

Fund Raising

Hi All,

First I must say a big THANK YOU to Mary, who did a mini marathon in her local area and raised over €100 - our first donation !!

Then Hilary, her sister and her friend did the Mini-Marathon for us and between them raised over €600.

THANKS again, Girls - we now have a bank account !

THANKS also to Charles Ryan, who designed our Sponsorship Cards and who managed to get them printed - all free. He is a true gentleman and a pleasure to do business with. Thanks Hilary and Emma (his wife) who introduced him to me.

If anybody is doing any form of fund raising in our name and requires sponsorship cards - I have them. They are suitable for any event - just let me know how many your need.

Because we now have money in the bank I intend to go ahead and order the ID cards. This was discussed at several meetings, including the open meeting in Dandelion. Most of us want some form of card for several reasons, e.g. in the event of a cataplexy attack in public. The card will explain what to do - or, more importantly, what NOT to do in this event. I envisage the cards will be slightly larger than an credit card, with name and date and I will laminate them. I will advise when they are available.

The Sub-Committee of parents who are dealing with the Pandemrix issue are making terrific progress. Interested parties will have received updates from Mary. Anybody interested in joining this group - please contact Mary.

So, it just remains for me to wish all our members a good summer - hopefully we will get the weather to enjoy it !!


Mims.

Thursday, May 5, 2011

A Date for your Diary

Well, our Forum has become quite popular ! It's so gratifying to see so many people using it for the purpose for which it was intended. Unfortunately, most of the posts at the moment centre around the terrible problems caused by the suspected link to Pandemrix.

So many children are believed to have been affected by the use of this drug, dispensed as the 'Swine Flu Vaccine' nationwide by the HSE. Even when a link between Pandemrix and narcolepsy was being investigated by other countries (most notably Finland), it was still being used in Ireland. So many children have been diagnosed with narcolepsy it's frightening. All affected have been given a life sentence as there is, as yet, no cure for this condition.

Maryf - a regular contributor on our Forum - whose son, Conor, has developed narcolepsy has been in touch with me to say that they have arranged a meeting for all parents and concerned individuals. The details are as follows :

Date - Sunday, May 22nd.

Time - 2.30 p.m.

Venue - Royal Dublin Hotel

Further information is available from Mary at 087-698 9277.

Please note that this is not a general Sleepy-Heads meeting but is specifically aimed at the parents of children suspected of being affected by Pandemrix. We will be arranging a general meeting in the near future.

Incidentally, according to an article in the Independent recently, GlaxoSmithKline were fully indemnified by the Irish Government, prior to supplying Pandemrix. Makes me wonder what GlaxoSmithKline knew or, at the very least, suspected that caused them to take this stand.

I will be at the meeting on May 22nd and I really hope that all affected parties attend. It will be an ideal opportunity to exchange information and, perhaps, get help on coping strategies, etc. that could benefit the children.

See you there !!

Mims.

Tuesday, February 15, 2011

European Narcolepsy Day

Would you believe it ? A day to commemorate us Narcoleptics ! How cool is that ? Well, this is taking place on March 18th next, when events are being organised throughout Europe. We really should do something in Ireland - it would be a great opportunity to highlight our existance.

I suspect that we're too late but, I have approached the Festival Organisers here in Dublin, with a view to walking in the St. Patrick's Day parade the previous day. Should we be successful with this approach, we intend to walk wearing night attire. Anybody interested in joining us would be most welcome. The more the merrier - and the bigger the group the more publicity we would draw.

We are also trying to organise a 'sleep-over'. In deference to the weather, this will have to be an indoor event. We are looking at venues at the moment. Anybody with any ideas - or better still, contacts - please let us know.

Needless to say, we probably won't be staying over-night but will be there all day, again in night wear. The 'night wear' can be anything you like - pyjamas, night dress, costume, fancy dress, the more outrageous and funny, the better. We hope to contact the press and media about our event, with a view to getting publicity. We are hoping to have a good crowd of us there all through the day. Maybe we could get a bed - this would not only draw attention to us, but we could use the bed to have our 'naps'.

Anybody with any other ideas, please let us know. Also, if you would like to organise something local to you - please go ahead. If you can walk in the St. Patrick's Day Parade in your area - great ! The whole point is to alert people to the condition and to educate the public.

I have opened a new 'topic' in our Forum for exchanges of ideas and general discussions about the day. So, please get your thinking cap on and post there !

I will keep you informed of any and all developments this end !

Mims.