Microneedles improve drug delivery

Posted on August 16, 2012 by Annie

Recently New Zealand member Matt drew BUS’s attention to research into the use of micro needle technology for the delivery of therapeutic drugs to the back of the eye . This link that takes you to the article found in “Gizmag”.

This procedure has yet to be trialled on humans, but if it works as it does in the animal study, it could well open the door for better treatment via eye injections. It should provide a less invasive and more targeted way of getting injections into the eye, and will open the way for slow-release drug design. Of particular note, the injected molecules did not reach the lens or front part of the eye in significant amounts decreasing the chances of side effects such as cataracts which commonly occur with this type of treatment.

Details of the study were published in the July 2012 issue of the “Journal Investigative Ophthalmology and Visual Science” where you can read the abstract for free, but you need to pay or be a member to access the full paper.

Authors: Samirkumar R. Patel¹,Damian E. Berezovsky²,Bernard E. McCarey²,Vladimir Zarnitsyn¹, Henry F. Edelhauser² and Mark R. Prausnitz¹ from the School of Chemical and Biomolecular Engineering, Georgia Institute of Technology, Atlanta, Georgia (1) ; and Emory Eye Center, Emory University School of Medicine, Atlanta, Georgia (2).

Uveitis Day in Edinburgh 8th September 2012

Posted on August 11, 2012 by Annie

Please see the poster below which advertises a forthcoming patient day in Edinburgh. We thought scottish members of BUS might be interested in this. Continue reading →

Local PINGU meeting 2nd October 2012 – Birmingham

Posted on August 1, 2012 by Annie

Consultants Alastair Denniston and Professor Phil Murray with Research Nurse Sue Southworth from Birmingham, have recently established a local uveitis group, called PINGU. In case you wonder, PINGU stands for Patient Involvement Group for Uveitis. What a great name! A few of our members may already come across this Birmingham Midland Eye Centre initiative.

The next meeting will be held on Tuesday 2nd October at 7.00 and the focus will be “What is uveitis and how can we find out more?” This is their 2nd meeting and if things go well they plan to meet every 6 months.

By attending these meetings you will get more involved in your treatment at Birmingham and help clinicians there provide better services to you. Everyone with Uveitis including Birdshot Uveitis are welcome to attend, but please drop us an email and let us know and we will pass on your contact details to Sue Southworth from Birmingham so that the team know in advance the likely numbers. For further information you can also contact Sue direct by email: sue.southworth@nhs.net.

Nick Bucknall, one of our active BUS members has been involved in helping the Birmingham consultants set this local meeting up and he will very pleased to meet other members of BUS in October.

The meeting will be held at the Birmingham Midland Eye Centre.

New BUS Fundraising Brochure

Posted on July 31, 2012 by Annie

We have a brand new fundraising brochure, pictured below. The brochure was designed by Alison from John F Hunt – thanks to BUS member John Hall, who is also one of our Directors. Printing costs were sponsored by Premier Print and Promotions Ltd. It clearly and simply explains Birdshot, why we need to raise funds for research and the work of BUS. We are so grateful to John Hall, Alison Sherring and Premier Print for providing this brochure at no cost to BUS.

The brochure can also be used by all of us to help raise the profile of Birdshot. It can also help to explain Birdshot Uveitis to your friends, family members, work colleagues and all those NHS and health professionals who you come in contact with. You may want to give some copies to your optician or GP, so that we can get Birdshot better known.

Please let us know if you would like copies to help you with this and with your fund-raising efforts.

New Birdshot Uveitis Poster for Hospital Eye Clinics

Posted on July 24, 2012 by Annie

BUS would like to support everyone who has been newly diagnosed with Birdshot. We want them to know that BUS is here to see them through their Birdshot journey and to help them with useful information and practical advice. BUS’s designer, David Bethell has produced a clear, eye catching poster which should stand out well on the walls and display boards of eye clinics.

If you are prepared to be our postman to make sure that the poster gets displayed in your local eye clinic and ERG department, please let us know, and we can provide you with the poster for you to ensure it is displayed prominently in your clinic. We know, from previous experience, that this is often a more effective way of getting the posters displayed.

You might like to ask your Optician or Doctors if they are also willing to display it. The poster’s size is A4 so it will not take up too much space on the clinics display area. You can help us to get Birdshot Uveitis better known by making sure that the poster can be seen!

Annie and Rea

Help Us Make Birdshot a Priority For Research!

Posted on July 23, 2012 by Reanna7

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?

Accessing unlicensed medications

Posted on July 23, 2012 by Reanna7

The Medicines and Healthcare products Regulatory Agency (MHRA) is the agency that regulates all new medicines. They weigh up the risks and benefits of each new medicine, following the completion of phase III trials and then decide whether to license it or not. Some of us with Birdshot will know that we are unable to get some medications that may be licensed elsewhere (e.g. in the US) or that have been tested at phase III trials, but have to go through the sometimes lengthy procedure to be licensed.

The MHRA is now consulting on whether they should provide early access to medicines before they are formally licensed. The consultation period ends on 5 October, and if the MHRA goes ahead with this scheme, it may mean that those of us who have tried all the more traditional approaches to controlling our Birdshot without success can get hold of newer medications earlier.

There are a few provisos, of course! The scheme will be voluntary and limited to medicines that show a “significant advance in treatment in an area of unmet need”. The MHRA also expects to limit the scheme to only one or two medicines each year. Finally, the scheme will be limited to those medicines that have reached phase III trials (apart from exceptional cases – yet to be defined). If this scheme goes ahead, the MHRA will provide an opinion of the risks and benefits of the medicine on its web site to help clinicians and patients decide, and it would then be up to the funding body (your local clinical commissioning group made up of GPs in your area; or specialist commissioning group) to decide whether to fund the medicine or not.

So, even if the scheme is launched, there will still be hurdles to jump over, but at least it provides hope for those of us who are struggling to get hold of medicines on the NHS which are not licensed here.

It would be really, really helpful if our patient and professional members could give their comments to the MHRA

To read more about the proposed scheme, please click on the link below:

http://www.mhra.gov.uk/NewsCentre/Pressreleases/CON174774

If you want to give your comment on this scheme, you can email earlyaccess@mhra.gsi.gov.uk by 5 October 2012

Fight for OUR Sight – support the Carrots Nightwalk

Posted on July 16, 2012 by Annie

On Friday 21st September 2012, Birdshotters and their friends are joining with Fight for Sight on the Carrots Night Walk. Already, because of the efforts of just a few of our group, friends and family, over £2,000 has been raised. Our target is £12,000, so we have quite a way to go. If you are able to take part in the walk, and help raise funds, please let us know as soon as possible.

If you are not able to take part in the walk, please support our efforts by donating to our team of walkers via the special team fund raising page at Just Giving.

Funds raised will go towards much needed research on Birdshot – hopefully we can find better treatments and maybe even a cure or prevention of Birdshot. We would be grateful for any donation – even very small amounts make a huge difference. We have 300 members, and if each of those were able to donate just £10 we would be able to find £3,000 for research. This is OUR future and the future of the next generation – hopefully they will not have to suffer Birdshot! So please turn out your pockets and make a small donation, especially if you are not able to join us on the actual walk yourself.

Thank you in advance for any small amount you are able to donate, and a HUGE thank you to our members from the UK, Ireland, Canada, USA and Australia who have already donated to this cause – you are stars!

So please dig deep and donate now.

Experimental models of autoimmune inflammatory ocular diseases.

Posted on July 16, 2012 by Annie

This recent review is from the Brazilian journal Arq. Bras. Oftalmol. 2012 Apr; vol. 75(2) pp. 143-7 For those with a scientific/medical background, the whole of paper can be found at the following link. http://www.scielo.br/scielo.php?pid=0004-2749&script=sci_issues

The review, written by medics, ophthalmologists and students, describes the main experimental models of autoimmune ocular inflammatory diseases. The hope is that by better understanding the process of autoimmune ocular inflammation in animal models, it will lead to a better understanding of human ocular inflammation.

The paper concludes that the current and new models experimental models being developed may help us to develop new therapies with fewer side effects or new ways of delivering therapies.

Exciting news – there seems to be so much work going on around autoimmune posterior uveitis. For those of you who want a fuller read, we reproduce the conclusion of the review below:

CONCLUSION

“Researches on experimental models have been important to explain the pathophysiological mechanisms involved in different ocular autoimmune inflammatory diseases. EAU is one of the most used animal models. After immunization with uveitogenic antigens, animals develop an immune response mediated primarily by CD4+ T cells. Clinical findings are somewhat similar to some human autoimmune uveitis. Even though these models contribute for a better understanding of the pathophysiology of autoimmune uveitis in humans, there are still many questions to be answered, such as triggers, recurrences, and individual susceptibility. Heterogeneous clinical findings may be related to the observation that each subject may respond to more than one epitope per antigen and respond differently to each one of them, depending on how it is presented and how it is recognized by the immune system.

Lately, new ocular inflammatory experimental models have been available due to the advances in genetics and molecular engineering. These models may help the development of news therapies, with more specific and efficient drugs, avoiding side effects. In addition, animal models are important for the study of new routes of drug delivery, especially by intravitreal injection.

Help change your future!

Posted on June 26, 2012 by Annie

We are posting this again and hope that if you have not already completed this short survey you can find the time to do it. Your help with this survey could help change future treatment for all Birdshotters!

Rea and Annie