News Round Up

Adult Social Weekend


BBS UK held their third Social Weekend in Birmingham across the 28th to the 30th September 2018 and what a fabulous weekend it was. We stayed at the Holiday Inn, near New Street Station and were looked after superbly by the hotel staff. On the Friday night we went to Ask Italian and finished the evening with a quiz in the hotel bar, which included a tactile, ‘guess what’s inside the sock’ round and a music round; great ideas for our next Conference Quiz!

On the Saturday we went to Hollywood Bowl where we had one game followed by lunch. Everyone really enjoyed the bowling and the opportunity to make new friends and catch up with old ones. After lunch we headed off to the Alexandra Theatre to watch Saturday Night Fever. The show was superb and had everyone singing along and at the end, everyone was up dancing; we left the theatre absolutely buzzing! We had a gala dinner and raffle in the evening followed by cocktail and mocktail making, which went down an absolute storm!

Sunday morning, we enjoyed a cooked breakfast before saying our goodbyes. This fantastic weekend would not have been possible without the support of our wonderful volunteers; our heartfelt thanks go to everyone who helped out over the weekend, you are all stars.

Young Peoples Activity Weekend - Whitemoor Lakes

We had a fantastic weekend at Whitemoor Lakes Activity Centre in beautiful Staffordshire for the 3rd BBS UK young people’s activity weekend on the 1st-3rd June 2018. Activities included sailing, raft building, mini boat making/floating/ bouncy castle, high ropes, zip wire, abseiling, archery, fencing, assault course, bonfire, movie night, crafts, treasure hunt. Amy Clapp our BBS support Officer, lives locally so was able to provide additional outdoor toys which enabled families to sit outside and relax while children played inbetween activities. We provided craft materials, movie night, bouncy castle and a treasure hunt plus a selection of soft drinks and snacks in evening. It really was a fabulous weekend, thanks to whole team engagement and commitment. BBS UK has reserved the weekend of 6th/7th July 2019 and booking forms will be available soon.


Sight Village Birmingham: 10th and 11th July 2018

Whilst we didn't have a stall this year at Birmingham Sight Village, Amy Clapp, BBS Support Officer and Aneeba Ahmed, Volunteer went along. Amy and Aneeba had a great day talking to people about BBS UK and visiting the stall holders to find out what's new, interesting and happening.

Anneba said “I had a very productive day at sight village today with the beautiful but crazy Amy Clapp. It was fantastic trying out the technologies and the sports at sight village. It was lovely to see Anne Cheesbrough and Anthony Mckay from touchbase and Lyn and sally and Connor Rolph from QAC and also it was fantastic to see Liz Carrol Birchall and Chris Lyon from Alstrom UK and Pam Hughes as well. I have made a new friend with Angela Claire Turner and it was a lovely surprise to see the beautiful Claire Eccles and Ryan and I got some useful information for our next BBS event”.

Rare Disease Day 2018

St Thomas’ Hospital showcased their wonderful newly opened Rare Disease Centre, the home of BBS Clinics for the London Adults Service, at an event to mark Rare Disease Day on 28th February 2018. BBS UK, together with two other patient groups who use the centre, were invited to exhibit posters, banners and leaflets to raise awareness about their rare disease and the new centre. Each table also had cakes for sale to raise money to develop an outdoor space into a garden for the new centre. We were invited to meet Steve Brine, MP and Parliamentary Under-Secretary of State for Public Health and Primary Care, to talk about the experience of living with a rare disease. BBS UK Vice-Chairman, Stefan Crocker represented BBS UK along with BBS UK Support Officers, Angela Scudder and Amy Clapp, Stefan said:

“I was quite nervous as I wanted to represent the charity I love in the best possible way. I found Steve Brine to be very easy to talk to. Dr Shehla Mohammed explained the medical side of BBS to him and then he started talking to me about my experiences. I was able to make him laugh when explaining how I see someone with having no head but a body if I look straight at them. I managed to slip into conversation my politics degree when he was asking me about employment and my lack of paid employment. He mentioned a scheme I had not heard of that the Department of Work and Pensions run called Disabled Confident.”

Later, the Minister visited the market place and BBS UK’s information stand. He took copies of the BBS UK Medical Information Booklet and Conference Report. He was very interested in the glasses Amy had brought along, which gave the wearer the experience of various visual impairments, including Rod-Cone Dystrophy. Members of the BBS Clinics Team, Dr Elizabeth Forsythe, Kath Sparks and Professor Phil Beales also joined us on the BBS UK stand and answered questions from other medical professionals; there was a great deal of interest from the medical community and especially from renal teams. After lunch, Stefan, Angela, Amy, Elizabeth and Kath walked across Westminster Bridge (in the snow) to attend the Rare Disease Reception at the House of Commons.

Steve Brine was the keynote speaker and started by saying how delighted he was with his tour of the Rare Disease Centre and to hear about the amazing work of the patient groups and the difference they make to the patient journey. He went on to say that the highlight of his day was meeting Stefan. Amy and Angela headed back to St Thomas’ and the BBS UK stand while Stefan, Kath and Elizabeth continued networking at the reception. All in all a great day for Rare Disease, BBS and BBS UK!

Sight Village 2017

Sight Village Birmingham: 18th and 19th July 2017 by Amy Clapp

The two day event was a success and it was a productive couple of days raising awareness of BBS. Day one was extremely busy with the general public with quite a bit of interest on our stall, lots of 'Who We Are and How We Can Help' leaflets given out along with the conference reports and many questions were asked on what BBS is and what we did. James Prendergast and Anneba Ahmed attended to support and interacted with everyone that visited us, explaining their own personal issues with BBS.

Day two we were visited by a lot more professionals, who had heard of us and were interested to know more. Medical booklets were given out to a handful of professionals, SENCO teachers and rehabilitation workers. Richard Zimbler and Rachael Foley did a fantastic job of explaining who we are, what we do and again personal experiences. They also spent some time walking around; talking to other organisations and promoting the conference with some interested companies wanting attend. I also had the pleasure of meeting a handful of visitors who have BBS and attend our clinics.

Sight Village Manchester 27th September 2017 at The Marriot Renaissance Hotel by Richard Zimbler

This event was organised by Queen Alexandra College Birmingham and on the day of the event there were almost 500 people who visited the exhibition. The BBS UK stand was staffed by Richard Zimbler, Rachael Foley and Dianne Hand. The event took place from 9:30am until 3:30pm. During this time we spoke to over 70 people, giving information and advice and handing out leaflets/booklets and freebies and raising awareness of the charity as a whole.

Sight Village Manchester was deemed as a great success and I think we should attend as many Sight Village exhibitions as possible in the future. As chair of the committee and as the event was in Manchester, I invited Rachael Foley who is an observer on the committee. When chatting to attendees and giving out information about BBS UK, Rachael gave them a leaflet about the sports and social voluntary community group for blind and visually impaired people in Greater Manchester as some of the members of this group have BBS. Attendees thought this group was a good idea so that blind and visually impaired people aren’t isolated and have other people to talk to who are a similar age and have a similar disability.