Volume 2, Issue 2, October 2015
OxPARC Newsletter October 2015
#wearpurpleforjia
Marathon success!
Kathy Bailey ran the
London Marathon in
3 hours 42 minutes
18 seconds and
is planning to do
Boston and London
marathons next year. She
raised £2,400 for
Arthritis Research UK!
Thanks to all who have been
fundraising this year!
Past events
CCAA – The Children’s Chronic
Arthritic Association (CCAA) organise
2 annual weekends for children and
families affected by JIA with
speakers, support and activities.
Attended by some of our patients this
year, who thoroughly enjoyed it!
Dates for 2016 coming soon at
www.ccaa.org.uk
NRAS – JIA family fun day: This year's
event was a great day for children to
have a fun day full of activities and
parent to listen to paediatric
rheumatology experts and enjoy
afternoon tea afterwards. Great
feedback from patients who
attended! More details at
www.jia.org.uk
Equipment
Me and another JIA parent, Sarah Evans, had an idea
to try and get people talking about JIA and spreading
awareness. Thinking about the ice bucket challenge
we decided to try and use social media to help us.
Together we came up with the idea to have a wear
purple day and use the hashtag #wearpurpleforjia so
that we could spread the word as much as possible. It was a HUGE success
and I intend to hopefully keep it going every year. This year we raised the
money for the Children’s Arthritis Association but the idea is to change
charity each year so that the small number of JIA charities all get the support
and recognition they deserve. Our local town of Corby, got behind Farah and
really did get involved. We had many local businesses take part and raised
almost £2000. The total is still yet to come in but it is looking like a lot of
money was raised for the charity. It really did take off with the whole country
taking part. We also had some international support. We just hope that next
year it is bigger and better.
By Lynette Haselip
OxPARC Parents’ Group
We had our first meeting to restart the parents’ group. This was a
constructive evening and highlighted some areas to think about, including
advice on psychological issues associated with diagnosis/treatment,
developing an injection tips leaflet, changes to the Oxparc website and the
need for a play specialist in clinic. If you have any feedback or thoughts on
these (or any other areas), any suggestions for items to consider for the next
agenda or would like to get involved, please contact Elaine and Ruth at
cnspaedrheum@ouh.nhs.uk. Next meeting 26th January 2016, including a talk
by Dr Juliet Kennedy, Clinical Psychologist, on 'Managing tricky invasive
treatments and associated distress in children (including MTX management).
Happening elsewhere

BSPAR (British Society for Paediatric and Adolescent Rheumatology) have
a Parent Group helping support families and develop services nationally –
newsletter and info at www.bspar.org.uk/parents or their Facebook group
Kindly donated: a second-hand large pushchair in good condition. Contact Elaine and Ruth for details.
Upcoming event

NRAS JIA art competition – 14th November – more information at www.jia.org.uk
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