The Amazing Gregor Tennant!

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Gregors mum Karen posted about his achievements on Facebook and has kindly allowed us to share that here. 
If you have a story to tell about your childs achievements – big or small – please let us know!

Hi, my youngest son Gregor was diagnosed with JIA in September last year and has been on treatment since as it affected his joints and also his eyes.
Gregor has been an absolute trooper and has put up with the weekly injections, two hourly eye drops, numerous blood tests and steroid injections and drips.
For a wee boy who was terrified of needles he has been amazing.

Anyway his Rheumatology nurse Catriona suggested I write to you as Gregor has managed to keep himself active throughout with swimming, cycling, football, running and hip hop. We were over the moon last Friday when he was presented with “Sports personality of the year” in his class at Lanark Primary.
Catriona thought this would be a good story to share with others. I have some pictures of him receiving his award but not very good quality as I was too emotional at the time!

Karen also sent us photos of Gregor receiving

“… two are medals he has won throughout the year which the school have asked him to take in ( I think they were both for football) He also recently sat his Bronze Freestyle BATD exam and was awarded highly commended for Hip Hop.”

Congratulations to Gregor from all at SNAC!

Focus Group – 19th July

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SNAC have been approached to find volunteers to attend a meeting in Liverpool on 19th July for a focus group related to steroid use in JIA.  If you think you might be able to attend, or would like some more information then please contact fionadonaldson@snac.uk.com

From the organisers:

We are holding a discussion group on the 19th July in Liverpool for JIA PPI consumers we would greatly appreciate if you may identify any patients in your network who may be interested.

We will pay for child care, travel, accommodation and pay them for the day activity. Food and refreshments will be provided on the day.

Time is quite short at the moment so that I would greatly appreciate if you may forward me with the interested participants’  contact numbers or emails so may answer any questions they may have and details for the meeting.

 

JIA – A Research Project

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We received this request from a student at Oxford Brookes University and would encourage as many of you to help them out as possible.

Dear Sir/Madam,

My name is Sajida Parveen and I am a student at Oxford Brookes University studying for an MSc in Psychology. As part of my course, I am conducting a research study to investigate Juvenile Idiopathic Arthritis (JIA) and its impact on transcription skills (handwriting and typing).

I am writing to ask for your help in inviting parents of children with JIA to take part in this study. This involves completing an online questionnaire about the impact of JIA on their child’s writing performance and takes no longer than 15 minutes to complete.
As this is a student project, the questionnaire will be available only until the end of June 2017.

The questionnaire is online at https://brookeshls.co1.qualtrics.com/jfe/form/SV_0UK6L3thAORIOLH

You Are Here!

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We’ve used the wonders of the Internet to plot the locations (approximate) of every SNAC family that we have details for.   If you aren’t already a member please consider joining.  It’s free and helps us to keep in touch and plan what we do.

Join SNAC

Relax Kids – Glasgow

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SNAC are funding a series of Relax Kids courses around Scotland and we have places available for the sessions in Glasgow.
Elaine Cavana (Relax Kids coach) will deliver 3 inclusive Relax Kids sessions which are based on ‘7 steps’ of move; play; stretch; feel; breathe; believe; relax. The steps include games, yoga stretching, peer massage (optional), breathing techniques, positive affirmations and relaxation. The aim is to teach children techniques they can use to help them cope with their JIA journey.
When: Saturday 9.30-11.30am 10th June and 1-3pm on 17th/24th June 2017 all dates inclusive.

Where: Tesco Shettleston Extra, Community Room, Annick Street, Shettleston Industrial Estate, Glasgow, G32 7JE

Contact: Please see http://www.snac.uk.com/relax-kids-for-snac/ for examples of what you can expect. Please email cavana98@aol.com to book your place. For more information please either email or phone Elaine on 07984 237531

We’re all Going to the Zoo!

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SNAC are delighted to announce that we have booked a family day out at Edinburgh Zoo and all SNAC families are invited.

We will be providing transport from Aberdeen, Glasgow and the Borders.  For other areas we will see what can be done based on numbers and location.

The date is Saturday 26th August and the timing will be confirmed when the transport arrangements are known.

Please email events@snac.uk.com to register your interest and we’ll send out the details.

 

Relax Kids Feb/March 2017 Aberdeen

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In Feb/March 2017 SNAC were delighted to fund another Relax Kids course of 3 sessions with Donna Fairley for children aged 6-11 with JIA from the Aberdeen area. Some feedback is shared below:

Each session took the children through Relax Kids ‘seven steps’: Move; Play; Stretch; Feel; Breathe; Believe; Relax.

Parents reflected on how the course had met their expectations:

“Kaydee (9) has enjoyed every session and talks about what she has learned with her school friends & family. Highly recommend the course”, Fiona Cowie, parent & SNAC Local Area Family Consultant.

“Over and above (expectations). Callum loved it and I could see how it worked. Callum used the tools” Holly Edmonds, parent.

“Eva…making new friends and also using the steps on a weekly basis, particularly around injection times.” Lesley Kane, parent.

“Lovely small group, no pressure, plenty of time to speak to other parents, share experiences and expectations. Skye always keen to come and participate in the group.” Nicola Burn, parent.

Parents shared their highlights “Seeing Callum use the tools at home ; Meeting other parents; Seeing Eva use the steps and tools given and actually wanting to use them; company of other parents; Skye feeling more confident and willing to share her experience of group and her condition with other people.”

Each child either made or was given a practical tool to take home every week. For example the ‘Mind Jar/Calm Bottle’ to model emotions, Hoberman Sphere to help with breathing exercises and ‘stretch cards’ with Yoga positions.

This group particularly enjoyed the breathing techniques taught with the peer massage, relaxation, games the Hoberman sphere: https://www.facebook.com/WellBalancedstudio/videos/1857194624554811/
and the calm bottle:
https://www.facebook.com/events/719050484930744/permalink/746932562142536/

All parents agreed the course was a good use of SNAC funds and would recommend the course to other parents of a child with JIA:

“hugely beneficial to the children and parents alike” Nicola Burn, parent.”

Edinburgh Clip ‘n’ Climb

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SNAC are hosting an event at Edinburgh Clip International Climbing Arena on Sunday 7th May 14:00 – 15:30.

The event is open to all kids with arthritis and their siblings, aged 4+

Adults can watch and have a chat.

For more information or to book a place please email tracyrendall@snac.uk.com or call on 07791789225.

Places are free but booking is essential.