Groundbreaking Research for Uveitis Patients

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Olivia’s Vision is delighted to announce a pioneering study (CLUSTER) into the diagnosis and treatment of uveitis, a serious eye disease which can cause permanent vision loss and blindness. The study aims to target children who are most at risk of developing uveitis.

Last year, in its role as patient representative, Olivia’s Vision was invited to participate in this new study involving over 5,000 children, which will create genetic tests to personalise treatment for children with uveitis, enabling specialists not only to predict which children with JIA will develop the condition, but also which specific drug will result in the most effective treatment, ultimately lowering the rate of vision loss and blindness from uveitis. The study was funded by the Medical Research Council (MRC), in addition to organisations such as Olivia’s Vision.

Professor A. V. Ramanan, consultant paediatric rheumatologist at Bristol Royal Hospital for Children, will be co-leading the research.

“Sight threatening uveitis in children is a major cause of avoidable visual loss.  This Medical Research Council funded project will enable us to make significant strides in our efforts to diagnose and treat uveitis in children more effectively.”
Professor A. V. Ramanan

Current treatment for uveitis works on a trial and error approach. Children are prescribed one drug after another to discover which might work for them.

Stratified medicine, also known as personalised medicine, will be able to specifically predict which drug will put the uveitis into remission so creating a tailor-made treatment plan, reducing the delay in effective treatment, and significantly lowering the risk of further vision loss and blindness.

Nicki Davis, Founder and Trustee of Olivia’s Vision, said:

“Olivia’s Vision campaigns on behalf of patients who need the most current drugs quickly. OV provides information on uveitis, emotional support and advice from diagnosis onwards. The new stratified medicine approach is a groundbreaking form of research, which will change the way uveitis is diagnosed and treated. Currently, in many cases children have to endure years of ineffective treatment for this devastating disease. Our involvement in this trial is the product of years of working with uveitis and rheumatology experts and the families of those affected by uveitis.”

Enquiries

For further information on the charity, Olivia’s Vision, please contact Nicki Davis at: info@oliviasvision.org

About Olivia’s Vision

Olivia’s Vision was established in 2010 to provide information, support and advice for anyone affected by uveitis.

Every year, an estimated 9,000 new case of uveitis are diagnosed in the UK, with uveitis now the third leading cause of avoidable blindness.

Olivia’s Vision also looks to the future by raising funds to train new uveitis experts, specialist paediatric nurses and research regarding potential new treatments, so that one day, vision loss from uveitis is eliminated.

Olivia’s Vision works with renowned uveitis and rheumatology experts including Professor A Dick (who sits on the Olivia’s Vision Medical Board) Bristol Eye Hospital and Professor A. V. Ramanan from Bristol Royal Hospital for Children.

For further information on Olivia’s Vision please visit our website: http://www.oliviasvision.org/

Be a superhero for the day!

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Help support Olivia’s Vision, by booking your place on ‘The Do it for Charity Superhero Run‘!

Location: London’s Regent Park
Date: Sunday 13 May 2018
Distance: 5k or 10k – you decide!
Time: Arrival & costume collection from 10am. Event starts at 11am

Save the date and get ready to pull on your cape!

This year Olivia’s Vision are taking part in ‘The Do it for Charity Superhero Run’. It is your chance to become a real-life superhero as you pull on your cape and join thousands of fellow runners as they descend on Regent’s Park, London.

To take part, all you need to do is sign up here, and pay a £25 registration fee, which will be reimbursed in the hope that you will raise the minimum target of £100 for Olivia’s Vision.

This challenge is not a race and should be taken at your own pace, whether you run, walk or jog. Bring the whole family along or do it solo and make friends along the way!

FAQ’s

Are there age restrictions?

Though the main Superhero Run is reserved for those 8 and over, there is a FREE mini run for under 8’s taking place just before the main run, so please bring along family & friends!

How do I book my place?

Places are on a first come first served basis so book now to avoid disappointment! To enter visit www.londonsuperherorun.co.uk. When booking, please make sure you TICK THE BOX which says you’ve decided on a charity. Then you will need to write Olivia’s Vision in the chosen charity box.

What is the cost?

The entry price is £25, however this year, if you raise the target £100 for Olivia’s Vision then you will get your entry fee reimbursed. Once you have signed up to run/walk, send your confirmation email to info@oliviasvision.org and you will be reimbursed as well as invited to join the Olivia’s Vision fundraising page.

Will there be refreshments on the day?

As well as the refreshments, competitions and events on the day,  Olivia’s Vision will also have a tent with refreshments. Bring everyone down to cheer you on, share a post-run picnic and soak up the sun!

Do I need my own costume?

Though you can of course bring or make your own costumes, FREE costumes will be provided on the day so you can turn into Superman or Batman in a flash! There will also be a costume competition!

Volunteers

Want to get involved but not keen on walking/running? We are also looking for volunteers to help run the Olivia’s Vision stall with refreshments in the park. Please contact info@oliviasvision.org if you’d be interested in volunteering.

Missed Prof. Murray and Out of the Blue Big Band’s November gig?

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If you missed the gig on Saturday 19 November 2016 which raised over £600 for Olivia’s Vision. You can listen to the numbers here.

And donate here!

Fellowship training success!

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The outstanding Fellowship training provided by Professors Murray and Dick and the hard work of OV Fellowship trainees has resulted in one of our first OV trainees, Efrosini Papagiannuli, being appointed as a uveitis consultant.

Efrosini tells us she is now a consultant in medical retina and uveitis at East Kent Hospitals University Trust. She is looking forward to her new role and building up a local uveitis service serving Ashford, Canterbury and Dover. OV wishes Efrosini every success in her new role and we’re bursting with pride at what she’s achieved so quickly after completing her Fellowship training.

To everyone who has donated to OV and raised funds for us, thank you. This is where your money goes – new uveitis consultants and specialist nurses. Without you, our OV Profs and the commitment of trainees to uveitis patients, we wouldn’t make this difference to uveitis care.

Congratulations, Efrosini! We promise to fill your uveitis clinics!

Prof. Murray and Out of the Blue Big Band raise over £600!

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ootb-town-hallProf. Murray and the  Out of the Blue Big Band raised over £600 on Saturday November 19th 2016 in aid of Olivia’s Vision.

A huge and enthusiastic audience were treated to 2 great sets by the band and their amazing vocalist, Jan Harris.

Many thanks to everyone who helped to make the night such a success… and if you missed the gig, you can listen to numbers here  and there’s still time to donate!

 

Live in America? Got Macular oedema?

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Join the PEACHTREE Study.

The PEACHTREE Study is a research study opportunity for patients with non-infectious uveitis who have cystoid macular oedema. If qualified, participants may receive no-cost study-related medication and no-cost medical care from a uveitis specialist.

To learn more or to find a study site near you, visit www.peachtreestudy.com

Find more trial information on ClinicalTrials.gov.