News from BUSNA

BUSNA = Birdshot Uveitis Society of North America

Birdshot Uveitis Society of North America (BUSNA) has had a busy first year. They celebrated their first birthday in June by releasing enhancements to their website (www.busna.org) designed to support fellow Birdshot patients. The enhancements include:

  • The Wellness Room a page dedicated to providing activities, sights and sounds that Birdies can use to relieve the stress the disease can cause. Readers can access links to you or ballet classes, museum tours, exercise and ;healthy diet tips and more.
  • The Canada page, where visitors can keep track of the exciting research and Birdie activity emerging there.
  • A Frequently Asked Question (FAQ) page where BUSNA offers a library of links to information where Birdies can find answers to some common questions
  • A research page which describes the two organizations whose Birdshot research BUSNA currently supports

In addition to website activity, BUSNA has hosted three regional online meetups to bring Birdshot patients together in a casual gathering to discuss the Birdshot journey. BUSNA plans to continue these meet ups in the Fall.

BUSNA invites all to visit www.busna.org and sign up for our mailing list to receive occasional email updates and notices about their accomplishments.

Christine Griffith – BUSNA July 2021

Final information for Birdshot day No 4

This is just a short reminder to you all about our forthcoming Birdshot Day if you are registered to attend. A lot of work has gone into the planning and preparation and we are happy to tell you that everything is well under way.

This year, we are delighted to be welcoming many regular birdshotters as well as a good proportion of new people to our 4th Birdshot Day.  You will be amazed to know that we have people travelling from as far away as the US, New Zealand, Malta, Israel, Portugal, Sweden, Switzerland Holland and Germany, as well as from the far corners of the United Kingdom – a truly international occasion.

On the day, the doors will be open from about 9.15am with the first talk starting at 10.00. We will have Birdshot Uveitis Society members, wearing their special T-shirts, downstairs in the hotel lobby area to help guide you up to the conference area on the first floor.

There will be filming taking place in the auditorium sessions, so we will need to ask you to sign a filming consent form (see below).

We always receive a great deal of help on Birdshot Days from the Patient and Public Involvement Team at the National Institute for Health Research (NIHR) Moorfields Biomedical Research Centre. This year, we are very pleased to announce that they will be running an informal lunchtime discussion, chaired by Mr Richard Lee (NIHR Moorfields Biomedical Research Centre)So, if you want to know more about how research is conducted and why it takes so long, or if you have questions about birdshot that you would like to raise in a group discussion, this will be another forum in which you can take part. More information about it can be found here.

To help you get ready, please find the following documents for Birdshot Day which you may like to download and read.

  1. Programme for the day
  2. Biographies of the speakers
  3. Photos of the speakers
  4. How to get to the Grange City Hotel
  5. Filming consent 2018
  6. List of exhibitors 2018

Raffle and BUS merchandise
As usual, there will be a raffle to help raise funds for BUS. Prizes include a Christmas hamper, Johnnie Walker whisky, framed photographs by Robert Connor McPeake,  a Gift basket from the US, goodies from Fortnum and Masons, and a  landscape textile wall hanging.There will also be special Birdshot Day T-shirts, saffron recipe mugs, caps, etc, for sale.

We will also have printed copies of the recently-published Birdshot Survival Guide available.

Please bring cash with you for your purchases as we don’t have the facility to take payments by card.

Transport
We have checked for train cancellations over the weekend of the conference. It seems that the District Line (London Underground) is going to be operating a good service, but depending on where you are travelling from, there will be a few line closures, so it is worth checking this in advance at http://content.tfl.gov.uk/track-closures.pdfl

And finally…
if for any reason you find you won’t be able to attend after all, please do let us know.  We will be finalising numbers in the first week of November, and we like to gauge this as accurately as possible to avoid waste.

The Birdshot Team are all looking forward to meeting you. It is not long to go now!

Annie

for Team Birdshot
info@birdshot.org.uk

Birdshot social in Manchester 22nd April 2017

You are cordially invited to a birdshot social in central Manchester on Saturday 22nd April 2017.  Details on the poster below.  Please email info@birdshot.org.uk to RSVP or call David on the telephone number given if you are planning to come  We need to know numbers so that we can cater accordingly.  There is not charge for this social, but you are welcome to make a donation to the Birdshot Uveitis Society if you would like.

birdshot-manchester2-arcon-colour-a4-rgb-bleeds

We are very grateful to our hosts the law firm DWF llp for kindly providing their conference facilities to us and a map of DWF’s location  can be found here.  If you require carparking please also let us know.

Moorfields charity walk from EyetoEye please sign up and help!

Help raise money for Birdshot research !

We thought it would be fun to get a team together to do the annual Moorfields EyetoEye walk on Sunday March 12th 2017.  After all, there are a lot of birdshotters who get treated at Moorfields and we believe it is great to be able to collaborate with other charity group events, especially if it is going to help promote relevant research.  Moorfield’s Eye Charity plans to have cake and coffee at the end and they are also going to have a live band and a bit of a celebration.  But afterwards, we wondered if we might find a venue close by (pub or cafe??) and have a bit more of an informal meet-up if we feel like it.

We’d love it if we can get 30 or 40 birdshotters walking (family and friends welcome) showing our support and enthusiasm for more research for birdshot.

So, our team is called “Birdshot.

You can sign up online https://www.moorfieldseyecharity.org.uk/eye-eye or if you prefer, you can pick up a registration form in the hospital which can then be returned to their office in an attached Freepost envelope. If you can’t find these in the hospital, Gaby in the Moorfields Eye Charity office is the person to go and find.  You may also see Gaby visiting the clinics, as part of her job is to go and meet patients.

Birdshotters can choose to walk either the 4-mile or 14-mile route according to fitness and preferences. Gaby has promised to let us have similar start times so that we can walk together, and that will also allow us to be able to get a great group photo before we set off.

4 miles – £12 to register

14 miles – £18 to register

There is no minimum sponsorship requirement: just raise as much as you can. You also get a free T-shirt and goodies at the end, but we will supply BUS T-shirts for all our walkers.

The times of the walk vary from 7.30am – 12 midday. I think we should go for a mid-morning time slot, eg, 11am, but I am open to suggestions.

If you want to take part, please sign up as directed above, but also drop me a line to let BUS know.  Here’s hoping for a sunny Sunday on 12th March!

Annie

Invitation to UK Birdshot Summer Social

As before, this event will be taking place on the beautiful Thames Sailing Barge  ‘Phoenician’ which is situated in St Katharine’s Dock, immediately adjacent to Tower Bridge, London. You are free to drop in at any point during the day, but make sure you are there in time for our speaker at 2.00pm whom we are certain you will not want to miss.

Victoria Makepeace, a member of the Birdshot Society, will give a short talk on nutritional therapy in relation to immune suppressants and Birdshot.  Victoria is a nutritionist and nutritional therapist who just happens to have Birdshot, so it is a subject in which she is very interested and which she has researched in depth for herself.   She will be happy to answer any questions you may have.   You can find out more about Victoria on her website:  http://www.vmwnutrition.co.uk/index.htm

As usual, we will be serving drinks and finger food and providing a place where you can chat to others with Birdshot, exchange ideas and information and be part of the Society.

We are extremely fortunate that the interesting and unusual venue for this event is provided by Board member and trustee John Hall. We do hope that as many of you who can easily travel to London and who would like to meet others with Birdshot are able to join us.

We are suggesting a donation of £20 per person for the event, but it will be free of charge to members on benefits or low wage.

Please RSVP to annie@birdshot.org.uk to let us know you will be coming so that we have some idea of the likely numbers.

Local Birdshot Meetings 2016/17

London Social Event with speaker

Speaker: Victoria Makepeace

Venue: The Phoenician, Thames Barge, St Katharine’s Dock London E1W 1LA

On  Saturday 13th August 2016

from  12.00 – 16.00

Manchester Social Event with speakers

Speakers:  To be confirmed

Please see the following link for further details: https://birdshot.org.uk/north-west-meet-up-new-arrangements/

Henshaws, Atherton House, 88-92 Talbot Road, Old Trafford, Manchester, M16 0GS

Date Saturday 22nd April 2017

from 11.00 – 15.00

Please do let Annie know if you are thinking of attending either or both of these events so that we can gauge numbers.   email:  info@birdshot.org.uk

 

 

North West meet-up: new arrangements

Due to various circumstances, we decided that it would be sensible to postpone our North West meet-up (planned for September) until April next year. We apologise for this change of plan. The proposed date is now Saturday 22nd April, and provisionally we will be holding it at Henshaws in central Manchester, as this provides a convenient location with transport links.  The time will be from 11.00am – 3.00pm.

The meeting is kindly being organized by BUS members Barrie Standish and Nick Bucknell, who are both active members of the Society.

As well as being a social event with lots of opportunity for chat and something to eat, we plan to have a couple of talks, and if possible to run a data and blood collection session for the Birdshot Database and Biobank. We are currently trying to work out the logistics of this to see if this will be possible. If it is, this would enable members from the North West and North East of England to contribute samples and information for future scientific research into Birdshot. Initially, the main centres for sample collection will be in Bristol, London and Birmingham and Manchester,  but we don’t yet have arrangements with other hospitals in the north such as Leeds, Liverpool, Newcastle Sheffield and Yorkshire.

If you are interested in attending, please put the date in your diary and email info@birdshot.org.uk to allow us to put your name down as someone who is interested in coming along so that we can gauge numbers and make sure the venue is big enough!

 

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

Next PINGU meeting in Birmingham

The next meeting of the PINGU (Patient involvement group for uveitis) is planned for 30th September 2014 at 6:30 pm in the CRF on ward D46.

This is a local support group for people with all types of uveitis that the Birmingham and Midland Eye Centre run.  If you want to obtain more information about uveitis and its treatment, come along and meet others with this type of eye problem as well as some of the eye clinic staff.

Please do let Sue Southworth know if you are planning to attend.

 

Sue Southworth, Research Nurse/ Co-ordinator

Birmingham and Midland Eye Centre

Tel +44(0)121 507 6844