Birdshot Day Poster – Saturday 14th November 2015

Here is the poster to advertise our forthcoming No 3 Birdshot Day on Saturday 14th November 2015.   The poster has been designed by  David Bethell, one of our trustees and directors, who is also a graphic designer.  As before, David has given his time for free.  M3 Global who are the healthcare marketing company that we helped earlier last year have sponsored the printing costs.  Thank you so much to you both M3 Global and David for their help with this.

If you would like to make sure the poster is put up in the hospital where you are treated, please let us know and we will send you a copy, so you can arrange this for us.  Publicity throughout the UK is most important, as we would like this to be the biggest gathering of people with Birdshot and people interested in the eye condition that has ever been held!

Details of the day and the programme will follow on the BUS website soon, with a link so that you can book your ticket to attend.    We can also email or post the information direct to.  Please get in touch with ub by email to info@birdshot.org.uk to indicate your interest in coming to the day.

The programme is well develped and we will already have some exciting speakers and activities organised. Please put the date in your diary!

Birdshot Poster Pompidou Transport MBP A4B

Talks from the Birdshot Symposium September 2013

Below are links to the different talks which were given at the 2013 Birdshot Symposium, hosted by Stephen Foster from the Ocular Immunology and Uveitis Foundation in Boston USA.  Its a terrific resource of talks given by specialists from across the world, which you can dip into if you want to find out more and  hear what the experts have to say.  Note:  they are aimed at doctors not patients so they are quite technical and detailed so will probably be better watched in separate sessions.  They  are posted on the Ocular Immunology and Uveitis Foundation website: http://www.uveitis.org/video/category/conference

  1. Best Monitoring Practices for BSRC – Henry Kaplan, MD
  2. Identifying the Gaps in Knowledge about BSRC – Albert Vitale, MD
  3. BSRC Epidemiology and Natural History – Albert, Vitale, MD
  4. Determinants of Remission and Cure – Phuc LeHoang, MD, PhD
  5. Birdshot Outcomes with Corticosteroids
  6. Immunogenetics of BSRC – Ralph Levinson, MD
  7. Cortocosteroid Implant Therapy for BSRC – Henry Kaplan, MD, FACS
  8. Navigating the Off Label Use Maze – Frances Foster, MS, NP
  9. BSRC Outcomes with Immunomodulatory Therapy – C. Stephen Foster, MD, FACS, FACR
  10. Biologic Response Modifier Therapy for BSRC – Antoine Brezin, MD, PhD
  11. Definition and Etiology – Antoine Brezin, MD, PhD
  12. Drugs in Development for BSRC – Bahram Bodaghi, MD, PhD
  13. The Unknown or Unaccepted Truths about BSRC – Carl Herbort, MD

3rd May Birdshot social & talk

BUS had a fantastic afternoon on the Phoenician Thames Sailing Barge last Saturday 3rd May, thanks to our hosts John and Janet Hall, and our fantastic speakers, Prof Glen Jeffery from the Institute of Ophthalmology and Chris Hogg a clinical scientist from Moorfields Eye Hospital. Over 30 birdshotters and their friends met socially in the beautiful informal setting. Continue reading

T cells found in the retina and choroid of Birdshot patients

Jonas Kuiper from Holland recently contacted us to let us know that a research paper on the characterization of Immune cells in the eye of two birdshot patients has recently been published.  They successfully  identified that the infiltrated cells are predominantly T cells and that they are directed to both retina and choroid. Although this has been assumed for decades, this research provided the first evidence that T cells directed against the eye are present in the eyes of birdshot patients. http://www.ncbi.nlm.nih.gov/pubmed/24530754.

Progress with stem cell research

Birdshot Uveitis Society has noticed that there have been a lot of new development on stem cell research in the news lately which offer new hope to those whose rods and cones are losing their function.  Here are a few examples which caught our eye in January and which offer hope for Birdshotters in the future:- Continue reading

Forthcoming dates for your diary

Following on from the success of last year’s birdshot events, in 2014 BUS has decided to hold:

  • two social events which will also incorporate talks about the research that BUS is helping to fund
  • a fundraising clay pigeon shoot, and
  • we will also be entering a team of walkers for the Fight for Sight Carrots Nightwalk

London social meetings and talks

The London social meetings and talks co-incide with bank holiday weekends. We hope this will make it easier to attend if you don’t live in the south east. The socials will provide an opportunity to socialise with other birdshotters and a chance to learn more about our birdshot uveitis research.   The meetings will be held in the delightful environment of a historic Thames barge located in St Katherine’s Dock. As before, a buffet lunch and drink will be provided.

  • Saturday 3rd May 2014 London social meeting with Professor Glen Jeffery from UCL and the Institute of Ophthalmology talking about the red light therapy research being carried out at Moorfields Eye Hospital.
  • Saturday 23rd August 2014 with Dr Graham Wallace from Birmingham University talking about the development of the birdshot bio-resource centre and national birdshot database.

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Fundraisers

  • 2nd birdshot shoot and auction on Wednesday 21st May 2014.   The venue (Royal Berkshire Shooting Club)  and cost of tickets will be identical to last year.  If you are interested in taking part as an individual or entering as a team, (4 guns), please register your interest now, because places are already going fast.
  • Carrot’s Night Walk – BUS will again be entering a team of walkers for the Fight for Sight Carrots Night walk.  The date and details have yet to be confirmed, but it will be on a Friday night in September.

If you are interested in coming along to the socials/talks, or taking part in the fundraising events please do get in touch and make a note in your diaries.  Email: info at birdshot.org.uk

Help Us Make Birdshot a Priority For Research!

We are re-posting this, as the survey ends on 31 July, and we need as many responses as we can get, in order to make sure that Birdshot becomes a priority for research.  If you have not already done so, please complete this survey.  It is quick and simple to do.  We have posted some ideas about what kind of research is needed into Birdshot at the end of this post, to help stimulate debate, and give you some ideas.  Remember that the more people who respond mentioning Birdshot, the more likely we are to get Birdshot as a priority!

The Sight Loss and Vision Survey is a joint initiative between Fight for Sight, The Royal College of Ophthalmologists, The College of Optometrists, the National Institute of Health Research, RNIB and The James Lind Alliance.  It has been set up to find those areas of research that have not yet been identified.  For us with Birdshot, this is really important, as we have a rare disease, and very little research has been carried out to date.  This is our opportunity to get Birdshot (and other rare, auto-immune forms of posterior uveitis) on the national agenda.  Because the survey will be completed by patients, it will have great credibility and it is hoped that funds can then be identified for some of the research needs.

The James Lind Alliance is a non-profit making organisation, funded by the National Institute for Health Research, which will oversee this initiative ensuring the exercise produces an unbiased result, with equal weighting being given to each of the participating groups – so your opinion really will count.

The Sight Loss and Vision Survey will allow you to identify your most pressing questions about the prevention, diagnosis and treatment of Birdshot.

The more Birdshotters that complete the survey the more likely we are to be able to influence the research agenda and receive valuable funding from the government for research into Birdshot – we really do need you to take part.

To complete the survey and learn more about this initiative please visit www.sightlosspsp.org.uk where you will find both the online survey and can request alternative formats – post/fax or telephone.

The survey takes less than 10 minutes to complete so please take this opportunity to represent Birdshot and help change the future of eye research.

Thank you!

1.  What causes Birdshot?

2.  Which part of the immune system becomes disregulated?

3.  How do you re-regulate the immune system without damaging the body?

4.  How can we find less toxic medication that does not adversely affect mental health and quality of life, but preserves vision?

5.  How can we ensure early detection of Birdshot to prevent sight loss?

6.  What are the genetic links and why are several generations of some families affected, and why does it seem to affect mainly Caucasians?

7.  Why is there a ‘spectrum’ of Birdshot?

8.  Why do different people respond differently to different medication regimes?

9.  Why is Birdshot treated systemically with toxic medications which adversely affect mental health and quality of life, when it seems to be confined to the eyes?

10.What does the link to HLA A29 mean in relation to treatment?

11.  What is the risk/benefit analysis of toxic treatment to prevent blindness versus blindness?

12.  What are the long term costs to health and social care of blindness which could have been prevented through the use of off license or off label medications?

13.  Is Birdshot best treated by ophthalmologists or should a clinical specialism of immunology be developed?

14.  Can holistic therapies such as acupuncture, meditation, hypnotherapy help in preventing or treating Birdshot?

15.  Can supplements, such as vitamin D or other therapies treat Birdshot less toxically than current medications?