Family Fun events 2010 Update house.
AGM Has been cancelled. this is due to an inconvenient date for most families Interested to attend, also Gosh has now Informed us we could only have weston house for 2hrs and this is not enough time.please read below AGM UPDATE We have been informed by many Family's that 22nd of may is not possible due to whitsun holiday week. we would like to have as many families attend as possible especially all our new families that have joined us over this past year, so it will be postponed until the summer when we can hold a fun day event so the children can attend too. the main reason for having an Agm at Great ormond street was it was more convenient for our Doctors to attend so we thought combine an Agm to but its not worth it if only a very few families can get there.PLEASE can we have your input to where it would be good to hold a family day with An Agm combined.nevertheless, if we get enough Interest in the next week it may still go ahead we will let you know.USE OUR ONLINE CONTACT FORM FOR ALL AGM FAMILY EVENTS INFO. THIS HELPS TO KEEP AN ACCURATE RECORD.
Donations and Thanks www.buy.at/shwachmandiamondsupportUK
We are please to announce we have secured some funding for us to get together in 2010. The Roald dahl foundation has secured funding for the Children's booklet and for a family event. The trustees have had a meeting (12-02-2010) and it has been so difficult to decide where to hold the next event because we are all so far apart.
We are looking forward to the theatre themed weekend we are holding in London On July 2nd. we have arranged for some of the older children to go and watch Grease the musical, have a great saturday sightseeing and saturday evening dinner at the hard rock cafe.
We have decided against Centre parcs because we could not accept the constant changes and restrictions centre parcs was trying to put on our booking. this unfortunate but we are looking at other venues.
WATCH THIS SPACE!
For all of you who have been to past events, will know they are a great opportunity to catch up with friends and what's been happening in your lives. i would encourage new families to come and meet others as this is a great way of hearing what other families have gone through and hopefully give you the much needed support for the future.
we will keep you updated with the progress of the funding and any suggestion for venues will be very appreciated.
Some of you at previous events have told us that your child's school would not give permission for one days leave. you can on medical and educational grounds have this time and if you have any problems the charity can write a letter of support.
For any future event, we will put all details onto the website with an on line application.we will send by post if requested and we know of a few families with no Internet. as you are aware we sent out twice this year letters to explain with the rising costs of Admin we will conduct most information via the website, so i urge you to look at the site from time to time to keep up with future events. depending on how much funding is secured, the next event could be on a first come first served basis so keep your eyes on this space.
All trustees are crb checked at the Enhanced level. this documentation will be available to see at all future events. with all the changes going on regards the safety of children, the charity will abide by all requirements by law to ensure the welfare of your children when taking part in any future activity. we give any details to parents if required at any event you take part in at the request of the charity.
I suggest when the next family event takes place we all take time to go to the Criminal records Bureau website to make sure we are all aware of whats expected of us. parents who have attended any event we have held, will know, your child's welfare and safety is first and foremost and this will never be compromised, but lets hope the guidelines will not make it to impossible for small charities to have a good time.
Donations and Thanks
I would like to thank everyone who has donated to us this last year. we will be putting a thank you page onto the website to acknowledge you all, but for now and you know who you all are a big thank you from us all.
Can I make it clear please.
If you use the charity name or number to raise funds on our behalf or the support group gives any letters of support for the purposes to raise money, then any money raised has to come to us. it is with much sadness we have had some incidences where families have asked for our help and support to which we have gladly given this, then any monies raised has never reached the support group.
The support group has laws and guidelines we have to follow where your money is concerned, so if in future we provide support for fund raising and no money is received, we will take action to retrieve any monies raised.
Important information about swine flu
National pandemic Flu service www.direct.gov.uk/pandemic flu
Information 0800 1 513 513 Treatment 0800 1 513 100 Text phone 0800 1513 200
We have had families Enquire asking the support group to advise. the support group cannot give any medical advise unless it is an answered question by one of our Medical advisory board members. if you are concerned at all by anything in connection with swine flu and your child's health, please contact the above, or consult your GP or child's SDS Doctor.
Research and donations
A donations page will be available within the next couple of weeks where you can donate on line securely this should be with the pay pal organization. over the past few months, it has been with much sadness that there has been a little misunderstanding with a couple of families.
This has been with donations. i would like to make it clear if a donation is given with specific instructions like you want it to go to research then we have a restricted funds account where that donation has to go. also we have the name of all our medical advisory board members who are responsible for the research into this illness, and we can give you there direct address to send yourself. if a donation is given with no restrictions it will go into general funds.
I have spoken to some of our Medical advisory board about research donations and there opinion was that it should come via us then to them as this shows through accounts that the charity is working in accordance with there objectives to promote research. but, at the end of the day its your donation but please remember the support group needs to keep going and Admin is not cheap.
Psycometric Research study
Thank you to all those families who have taken part in the Psycometric Research study at Great Ormond Street Hospital.
We hope being part of this study has helped your child, and will enable your child to move forward with any issues that had risen before your child had taken the Testing. The charity part funded Travel and accommodation expenses for families and we hope this was helpful to all those who received it.
A Big Thank you to Kate Rigby and Dr Mandy Bryon at Great Ormond street for there time and commitment and we look forward to the research outcome in the Autumn.