Parents and volunteers unite to raise funds and awareness for rare childhood condition

Isle of Wight medical volunteers and parents are hoping to raise funds and awareness for two very rare conditions that can devastate families if diagnoses or treatment is not forthcoming. Little is known about PANDAS and PANS in the UK, but this campaign hopes to change that.

radeks art auction

A group of parents and medical volunteers from the Isle of Wight will be spending the next few weeks focused on raising awareness of two conditions that can drastically change the lives of families, but which very little is known about in the UK.

Rare and complex conditions
The campaign is the brainchild of a group who are all pulling together to raise awareness of the condition, as well as raise funds to help those affected by the both rare and complex conditions called Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).

Children and adolescents with the condition show neuro-psychiatric symptoms following exposure to a trigger such as Strep, Pneumonia, Influenza, Mononucleosis or even environmental factors. Very little is known about the condition making it incredibly hard for a diagnosis or treatment in the UK.

Raising funds and awareness
The team have put together a whole host of fundraising activities – from a family fun day (See Facebook event page) to a parachute jump, an abseil 300 feet from the top of the Spinnaker Tower to one man running the equivalent of three marathons in 24 hours.

There is also a brilliant art auction being organised by Isle of Wight photographer, Radek Gora. He and others have donated items for the auction – find more detail here.

If you have work you can donate, get in touch with Radek through Facebook.

Find out more and show your support
A great Website has been set up and provides a comprehensive background on the condition and what you can do to help.

Click around the Website to find out more about each person taking part and how you can sponsor them.

This is an incredibly worthy cause and deserves as much support as we can all give.

Monday, 7th August, 2017 1:34pm

By

ShortURL: http://wig.ht/2fxr

Filed under: Community, Health, Island-wide, Top story

Print Friendly, PDF & Email

.

Any views or opinions presented in the comments below are solely those of the author and do not represent those of OnTheWight.

5 Comments

  1. It’s not ‘pediatric’. It’s ‘paediatric’. Please do not use US English. Stand up for British English.

    • Sally Perry


      8.Aug.2017 10:36am

      Oh, how I look forward to your regular contributions Milliard.

      You’re right, I could have used the ‘paediatric’ spelling in my article, but instead, rather than make any errors in the name, I simply copied and pasted the description from the campaign’s official Website.

      I hope you are able to help support the campaign with a donation, rather than simply contributing to the debate by criticising their use of language.

      • roblindeman


        8.Aug.2017 12:41pm

        The US spelling may be correct because it is a proper name of a (putative) medical entity. A quick Google-Scholar search of the medical literature returned only titles with the US spelling

      • Sally Perry


        9.Aug.2017 12:26am

        Looks like it was a good thing we used the US spelling as I have just heard from the organisers of the campaign.
        They say

        “Hey there just to let you know that your lovely piece on our attempts to raise awareness and treatment funding for PANDAS/PANS UK has reached the USA. A very influential and strong ambassador for this condition has asked us to make contact with her. Thank you so very much!”

Add comment