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Welcome to the SNAC.uk.com website.
The aim of SNAC is to provide a national support network for children with arthritis and their families through the provision of factual, practical and emotional support.
It aims to pull together the wider community of affected children in Scotland as well as raise public awareness of childhood arthritis.
SNAC is a registered charity.
Charity Registered in Scotland No. SC040193
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One Hundred people will be running in this years Edinburgh Marathon on 27th May to raise funds and awareness for SNAC. Many of these brave souls gathered for a photo shoot recently... Lets hope they look so happy after the event! Posted by Michael on Friday 11 May 2012 - 18:03:46 | |    | |
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We recently posted a question on the Facebook group page on behalf of consumers, (parents and patients) on the Medicines for Children Research Network ARUK clinical studies group. They want to know 'what are your top three concerns you have about your childs condition and care?' We had over 20 replies from 2 groups, thank you to all who responded. these replies are fed back anonymously and are identified as consumer priorities for the research agenda. It would be fantastic to have a higher number of respondents (representing more) so if you have a moment please take the time to reply to this question on the ForumBest regards Sharon Douglas,Katarine and Joanne (members of the clinical studies group) Posted by Michael on Saturday 05 May 2012 - 07:31:47 | | | |
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Does your child use a 'Buzzy' to help them cope with injections? We are keen to hear about peoples experiences and to assess if they are effective. Please consider downloading this chart and recording your experiences with the device. Completed charts can then be posted to Sharon at the address in the Contact Us page. Thank you. Michael Posted by Michael on Saturday 05 May 2012 - 07:18:29 | | | |
| Discussion Forum - UPDATE | | | |
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Discussion Forum Now On LineThe new discussion forum is now on line. Please use the link at the side or go straight there. The new system has enhanced security features that should limit the large amounts of spam we were experiencing. Unfortunately, everyone who registered for the previous forum will have to re-register for the new one. As before, and details given will only be used by SNAC for administration of the site and contacting you about SNAC activities. They will not be passed on or shared with anyone. To register go to the forum and click on the Register link near the bottom of the page. Please note that your first post to the forums will have to be approved by a moderator. This is one method of filtering out the users posting spam. All real posts will be approved and then you will be able to post without delay.Posted by Site Admin on Thursday 29 March 2012 - 18:17:54 | | | |
| Note from Sharon Douglas. | | | |
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SNAC Committee ChangesAt SNAC's recent AGM Sharon Douglas stood down as Chair after three years in the role. She has been the driving force behind SNAC since its inception and deserves a huge thank you from everyone involved in SNAC. Without her there would be no SNAC. So thank you so much for all your hard work and determination Sharon. Sharon will continue as a member of the SNAC Committee and in fact will be our new General Secretary. Ruth Wyatt continues as Treasurer and Carla Houston as Minutes Secretary.
I would like to introduce myself as the new Chair. My name is Tracy Rendall and I have four children. My youngest daughter, Jos aged 6, has JIA. She was diagnosed around about her second birthday. I hope I can do as good a job as Sharon has over the last three years, but it is a daunting task! I do promise to do my very best though.
Annual Parents DayOn the 12th November SNAC held a Parents Day in Glasgow. Feedback from the day was very positive and we would like to thank all the parents and carers who attended. We would also like to thank the rheumatology specialists for giving up their free time to attend and ensuring the success of the day. We also had the good fortune to have two JIA patients attending and giving a presentation on what it is like to grow up with JIA. They were amazing and I certainly found them truly inspirational. Many many thanks to them for their help on the day.
Calling all those with Systemic JIASNAC has the opportunity to input a submission to the SMC (Scottish Medicines Consortium) regarding the licensing of Tocilizumab for paediatric use. We need input from as many people with Systemic JIA (or their parents/carers) as possible. The kind of information we need is as follows:
the way people are affected by Systemic JIA; patient/carer views on the treatments and medicines that patients currently receive, including the advantages and disadvantages of different medicines, preferences (and the reasons for those preferences) and needs that are met or unmet; and the likely impact of the new medicine on the lives of patients and carers, including what the advantages and disadvantages might be and what unmet needs the new medicine might alleviate.
If you are interested in helping us with this, then I can provide you with more information on what is required and on Tocilizumab itself. The closing date for our submission is the 12th of December so we don't have long to gather the input. Please let me know if you can help. My contact details are below.
Thank you.
Launch of new SNAC Facebook GroupSNAC has launched a new group on Facebook http://www.facebook.com/groups/snacgroup/ (You need to sign in to Facebook to access the group).
We hope that as many people as possible will join the group and use it as a way to network with each other. This is an easy way for even the most isolated families to keep in touch and hear about what is happening with others in a similar situation. It is also a great way to let everyone know about any fundraising you are doing and can help spread the word with links to Justgiving or detailing other ways to support you. Please help make this a useful and successful group by joining and inviting your friends to join.
We are also planning to launch a SNAC page on Facebook where we will put the latest news from SNAC, links to the SNAC website (which is currently being updated) and other useful links and information. More news of that in the near future.
Fundraising - Edinburgh Marathon 2012SNAC relies on fundraising to be able to provide the support and services that can make such a difference to children and families affected by childhood arthritis.
SNAC will be entering a number of runners and teams in next year's Edinburgh Marathon. On Saturday 26th May 2012 there will be a 10km, 5km, two Junior Races, an International Breakfast Run, Mascot Race, a 5k wheelchair and 5k hand-bike race. On Sunday 27th May 2012 the full marathon, half marathon and team relay take centre stage. We aim to raise £5k, so need lots of help. We are hoping to have a number of teams including a Rheumatology hospital staff team as well as individual runners, if you think 26 miles might be a tad far, the relay gives you the opportunity to run either 6 miles or 8 miles. Edinburgh is known as a very flat marathon !! We are very keen to have as many people running for SNAC as possible, raising funds as well as awareness of childhood arthritis.
If you are able to raise a minimum of £100 for SNAC, then SNAC will refund your entry fee. We can provide sponsor forms and we are also registered on the Just Giving website, http://www.justgiving.com/snac .
We hope to become an affiliated charity of the Edinburgh Marathon as soon as possible, but in the meantime please apply for your own individual places directly. If you want to run as part of a team, but don't have enough runners please contact us. Please get in touch secretary©snac.uk.com if you are interested and would like to run for SNAC or would like more information.
I would like to say a big thank you to everyone who has already been fundraising for SNAC. Special thanks this month to Ricky Gilbertson, Alison Elder and Douglas Brownlee who have all done sponsored events (run, cycle and walk) It is hugely appreciated - without you we couldn't do what we do. I hope I will be hearing from lots of you via Facebook very soon and for all those runners out there - let's start training!
Best wishes
Tracy Rendall
Chair, SNAC
Posted by Michael on Tuesday 13 December 2011 - 21:23:34 | | | |
| September Newsletter now published. | | | |
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[ Scottish Network for Arthritis in Children ]
