BBSUK

Bardet-Biedl Syndrome UK has seen an active and diverse year of fundraising and the trustees and members continue to be very grateful to everyone who has contributed. The charity relies heavily on these stoic efforts and the money is used in so many ways, from providing support and advocacy services and producing information to subsidising our annual family conference; a weekend valued by so many people, especially our members who have BBS.

First of all, a huge ‘thank you’ to everyone who has raised funds or donated over the past year, you have been running, organising parties, making cards and crafts and so much more to raise funds for BBS UK, what a year you have had, you are all stars! Your support really is so very much appreciated, if you want to try something new or are looking for new fundraising ideas, there are so many fun ways to help BBS UK. Find out more on our Fundraising Page.

We can’t wait to hear about your fundraising achievements over the coming months, so please keep in touch with the fundraising team at fundraising@bbsuk.org.uk. Without every single one of you, the charity could not continue the valuable work that it does. Keep up the good work!

2018/2019 fundraising endeavours

Raising money for Caitlin

Liam and Ashley Wilkie from Kirrimuir and their incredible supporters are raising funds for BBS UK. Their aim is to dedicate 2018 to a series of fundraising challenges to help the charity and ongoing research in order to try and get the breakthrough that may help prevent their little girl Caitlin from losing her sight. “This charity obviously means the world to us as it is the only charity capable of changing our little warrior's future and possibly preventing her sight loss. We, along with some close family and friends are embarking on a 400km cycle on the west coast in 3 days ; 3 close friends are running the Inverness half marathon ; and myself and Ash are running in the Great North run as well. We also plan to organise a race night in the summer months.” After setting an initial £5,000 target, the couple have been overwhelmed by the generosity of people who have supported the cause. The amount raised currently stands at over £79,000 with more to be added through Gift Aid. Your can read more about all their fundraising achievements so far below in our fundraising story section.

RBS Bowls Club: Raising Funds for BBS UK

Vera Scudder has a Grandson with BBS and as the Captain of The RBS Bowls Club, nominated the charity to be the recipient of the club’s fundraising efforts during her three years as Captain. The club members have been extremely generous and across the three years they have raised over £3,000 for the charity. The photo shows Vera’s last Captain's Day, during which they raised £350. They all wore bright coloured tops in aid of BBS and a great time was had by all! Vera said, ‘We would like to wish everyone at BBS UK the very best for the future and hope that in some small way, we have helped by raising funds for such a worthy Charity.’

From Land’s End to John O Groats for BBS UK

Keen cyclist, Mike Kear smashed his fundraising target to raise £6,500 for Bardet-Biedl Syndrome UK by cycling from Land’s End to John O’ Groats. Mike chose the charity in support of his friend’s daughter, Ellie Jones, 18, who has BBS. Cycling 969 miles over nine days in challenging weather conditions, Mike said it was an unforgettable experience, “We had apocalyptic rain in Bath, rain in Scotland and then breathtaking scenery.” Mike cycled more than 100 miles a day and camped overnight. Among many highlights was riding with cycling star Mark Cavendish, “It was a once in a lifetime experience that I will never forget.”

French Alps Cycling Adventure

In September 2017, Colin Barr flew out to Geneva to prepare for a gruelling 4 day, 550km cycle ride over the French Alps to Nice along with 30 others all riding for their own chosen charities. Colin chose BBS UK as the beneficiary for his challenging fundraising venture in support of his colleague whose young daughter had been diagnosed with the syndrome; he said, ‘There is much ongoing research into this condition including future gene therapies and I wanted to do as much as possible to try and support this worthy cause.’ Colin raised nearly £2,000 for BBS UK.

Aneeba takes on the Big Birmingham 5K

In September 2017, Aneeba Ahmed took part in the Big Birmingham 5k fun run in Cannon Hill park to raise money for BBS and RNIB. Aneeba was accompanied by Sarah Borrows, the Clinical Nurse Specialist for the BBS Service at Queen Elizabeth Hospital, Birmingham. Aneeba raised a fabulous £85 for BBS UK and £35 for RNIB and is looking forward to completing the event again in 2018 with Sarah and Amy from BBS UK. Aneeba is looking forward to attending the BBS UK Family Conference in April and talking about her experience of living with BBS.

 

MORE FUNDRAISING ENDEAVOURS TO INSPIRE AND ADMIRE

When we were given the news of our daughter Caitlin’s diagnosis of BBS in March 2017, we were completely lost for a while. We knew basically nothing of this syndrome and to be fair, our hospital admitted the same, they had never diagnosed it before. They did however issue us with the BBS booklet which is available on your website and we found this a great source of information. It was thanks to this and the website that we found out about the yearly conference which we duly attended in April 2017. Everyone there was so nice and welcoming and we learned so much from this weekend.

It was after this that we decided to do what we could to help the charity, which in turn would help our little girl over the foreseeable years ahead. Fundraising seemed the best way, so we drew up a battle plan throughout 2017 and made our JustGiving page live just before Christmas. The response to date has been overwhelming with nearly £20,000 raised so far in only three months thanks to the generosity and kindness of family, friends and our little community here in Kirriemuir. The whole town has got right behind us and a number of other people now have fundraisers planned. We have commenced our challenges this year and there are far more to come. This year has included and will involve:

Raising awareness with the Scotland Rugby team

We had some charity BBS wristbands made up in autumn last year which we sold for £2. We made just over £1000 from these and sales continue to amaze us. Royal Bank of Scotland are now on board with these and have taken 200 of them, they want to get their workers to wear them and they have promised donations throughout 2018 as one of their chosen charities. We had a bit of fun with them and managed to get the Scotland Rugby team to send pictures of them wearing them. A few of them actually kept them on as they were seen in the upcoming weeks in photo shoots and paper articles still wearing them!

Talk on BBS at the Kirriemuir Feel Good Festival

We were given a one hour slot to discuss BBS, the diagnosis and what the future holds. All talks on average got 10-12 people throughout the day, we were lucky enough to get 60 people through the door which helped raise awareness of the syndrome.

Race Night

This was always going to be our main fundraiser. We have done one before and raised £3,000, so we had hoped to match this, however, we managed to get £7,800 on the night which was amazing. We had over 100 people through the door, 17 race sponsors, multiple auction and raffle prizes and live music at the end of the night. A huge success if not slightly overwhelming.

Co-op Raffle

Our local Co-op held a raffle for St Valentine’s day in aid of BBS and raised £600 across just two days of selling tickets.

Inverness Half Marathon

On 11th March 2018, three of our close friends ran the Inverness half marathon for BBS. They have raised approximately £300-£400 to date for their efforts which has included the sale of home-made fudge.

Wilkie West Coast Cycle Challenge

This is my next challenge. Myself and six of my friends are cycling 300 miles in three days over the west coast of Scotland, taking in the Island of Mull at the same time. Fundraising is well under way, again our hope is to generate £400-£500 with this challenge, which is booked in for 27th- 29th April.

Tombola and Cooking Kitchen, Bon Scott Weekend

In Kirriemuir, we have a music festival every May in aid of Bon Scott from AC/DC. Bon Scott originated from Kirriemuir and over the years, this festival has grown beyond belief with literally thousands of fans coming to Kirriemuir for the weekend. The organisers have allowed us to have a stall on the Saturday in the town where we plan to do a tombola. The local cafe is giving us full use of their facilities on the Saturday to make teas, coffees and make pots of chilli and rice etc to sell to the festival goers. Again this could be a great fundraiser considering how busy it always is.

Culloden to Clova for Caitlin

One of the Kirriemuir residents, Eck Robbie, read our story and was determined to do something. He is looking to re-create the route the Ogilvy clan took home after their defeat at the battle of Culloden. This is a 100 mile walk from Culloden to Glen Clova taking in some very remote areas which includes two nights of wild camping. They hope to do this in five days. There is a group of eight doing this and hope to raise £200-£300 each. Work is in progress with sponsorship of this, but we are hopeful to get Grants Whiskey Distillery to be a main sponsor and donate a substantial sum towards this.

Great North Run

In September, both myself and Caitlin’s Mum, Ash, are running the great North run which is the half-marathon in Newcastle. We have had t shirts made up with the BBS logo so we can raise awareness.

On top of the above we have other community members doing various runs and walks throughout the year with all proceeds being donated to BBS. Our initial target for fundraising was £5,000. Realistically this is more likely to be £25,000 by the end of the year.

Liam Wilkie

Emma Oates and her son Tom, 15, undertook a massive challenge in the summer to raise money for LMBBS.  Along with a group of children and staff from St Aidan’s School, they completed an incredible 225 mile, Coast to Coast, tandem bike ride from Flamborough to St Bees.  Here’s how they got on:

“We left Flamborough at around 11.15am after first dipping our wheels into the sea. It was quite a spectacle for onlookers who watched us carefully descend the steep steps to the beach with bikes in hand; this was particularly awkward with the tandem but Tom was determined that the wheel was going in the sea. The ride across to Helmsley where we stayed on the first night was mainly flat with a few undulations and the group were in good spirits. As we were grinding away up a bit of a hill, I looked up to see our friend Mark, who had peddled out to meet us from Malton. We arrived at Malton Youth Hostel at 8.15pm and were greeted by my daughter, Katie and husband, Steve, with puppy in tow!! The Archbolds and Florence were all waving union jacks and cheering us in, what a treat and a real boost to us all at the end of the first fifty five miles. Thank you!!

We woke at 7am on Tuesday morning to slightly more overcast conditions. After a good breakfast and quick check of the bikes, we set off from the youth hostel just after 9am. We climbed out of Helmsley on the main road towards Sutton Bank and then took a left turn down into Ryedale. We then turned up a grinding hill and climbed right onto the top of the North Yorkshire Moors. I was fairly tired at the top and the sun was burning through so we stopped to take a drink and apply lots of sun cream!

What happened next was unexpected and to be honest, fairly scary. We began the descent into Ampleforth which was a long sweeping road. With the weight of Tom and I, the tandem flies downhill but I am very conscious that I have to be careful because I have Tom on the back, so I tend to brake all the way down hills. Not understanding the effect this would have on the bike, I kept the back brake on all the way down. Because it was such a hot day, the rim of the rear wheel overheated and caused the tube and tyre to blow big time. It happened so quickly that I never had time to think, instinct just took over. The bike was snaking from the side to the middle of the road and it took all my concentration and nerve to bring it to a safe stop. I was very shaken up at the thought of what could have happened, both in terms of Tom and I crashing and the fact that the rest of the group were behind us.

Anyhow we were safe but the bike was not useable. Steve arrived like a knight in shining armour (well in a white van at least!!) with our spare tandem and we switched onto it for the next 40 miles whilst he drove the damaged one off to be repaired. He intercepted us later at Thornton Steward and I was relieved to be back on the original bike. The difficulty with the replacement tandem was that it is not road specific and has big wide tyres, so it was really really hard work for us to peddle and catch up with the rest of the group, which took its toll on me later in the day. By the time we reached Snape, I had lost it, no energy and sore legs. Tom was also struggling and although there were no complaints from the back of the bike, there was no power or conversation either and I could tell he too was feeling tired. So we were relieved to stop, take a rest and some food and drink. I was even more relieved when Tom’s headmaster/teacher, Mr Burt, offered to take the front of the tandem for a bit and I enjoyed the rest. We stayed at Grinton Lodge, between Layburn and Reeth at the end of day two, in the most beautiful surroundings and I was relieved to get showered and fed and get a good night’s sleep.

We awoke on Wednesday to another sunny day. Everyone was in good spirits and I was in a particularly good mood because my friend Clare had pitched up to come and join us for days three and four. Clare and I have peddled many miles together and had some fabulous adventures on the bikes, so it was great to have her along. We began the day in very good humour with a descent into Reeth and then we began to peddle up Swaledale. The road here is undulating and I could feel the efforts of the previous day, especially in my thigh muscles which were hurting up the hills. We arrived at Mucker and stopped for a drink and a snack. Mr Park, Tom’s headmaster/teacher offered to take Tom and the tandem from here up to the top of the Dale and to be honest, I didn’t put any argument up, I was more than happy to have a little rest.

We arrived over the Cumbrian border and the weather changed, blowing squally showers of rain across us as we attempted to have our lunch on the very top of the hill. Once eaten, and in view of the close shave we had yesterday, I decided that it would be better for me to go back on the tandem for the decent off the tops and down into Kirkby Stephen. I was quite nervous, conscious of how shaken I had been at Ampleforth the day before. I went ahead with Tom and Clare rode along side me until we reached the bottom. I tried to dab the brakes on and off instead of just holding them on, It was a good descent and we arrived at the bottom in one piece. Mr Burt offered to take the tandem for the next bit and happily I enjoyed riding his solo bike again, encouraging Tom to push hard as we made our way along the ten mile stretch to Appleby, where we stopped for ice cream. We ended the third day at Dufton youth hostel around eight miles out of Appleby and once showered and fed and the children were all in bed, Clare and I enjoyed some good laughs and a drink.

We awoke on day four to torrential rain. This was not what we wanted and the staff, Clare and I made light of it with the children in order to keep their spirits up. Despite the very heavy grey Cumbrian rain, the kids all remained upbeat and there was a lovely moment when we were all astride our bikes ready to go when they all rang their bike bells, it was like something out of a Queen Song and such a joy to see them maintain their good humour. We peddled on to Penrith and beyond, stopping for lunch in a great cyclist’s café, where we were treated to hot soup and hot chocolate. The rain was beginning to die away and we continued to Keswick and then to the base of Honister Pass. Mr Burt agreed to take Tom up this hill which is about two miles long and includes two 1:4 sections. There was no argument from me and I happily climbed it on his bike whilst he a Tom grinded away to the top, where our Youth Hostel and place of rest for the evening was waiting for us.

Again, it was a bonus that Steve, Katie and Tom’s friend Rebecca  came to meet us for tea. We all stood at the top of the hill watching the kids peddle to the top, encouraging each other up, the stronger ones helping the weaker ones along, it was a joy to see. After our meal it was time to say goodbye to Steve, Katie and Rebecca. . .and reluctantly I had to let Clare go home too, after two great days cycling together.

We woke on the last morning to a lovely day! The descent from the top of Honister is particularly steep and I decided, in view of the Ampleforth incident, to walk down with Tom, whilst the tandem was carried in the minibus. We set off before the rest of the group and got on the bike about 2/3rds of the way down the hill, the steep bit behind us. We peddled on with purpose, almost able to smell the sea air and the end of our 225 mile journey. Morale within the group was high and I could sense the kid’s feeling of pride and achievement. With just over thirty miles to go, we never stopped for lunch; we were all just so keen to get to St Bees. With around two miles to go, we could see the sea and this drove us on to the end. We arrived, tired but delighted at around 2pm and rushed down to the waters edge to dip the front wheels of our bikes into the sea.

All in all we had a great week, spent with an amazing bunch of children and staff. As a family we were very touched that St Aidan’s chose the Bardet-Biedl Society as the nominated charity for the ride and are very grateful to everyone who donated. We had pledges of over £3000 and have collected around £2600.

Not long after the Coast to Coast challenge, Tom’s headmaster, Mr Wood, nominated him for a Future Hero award at Harrogate local radio station, Stray FM.  Future Heroes are awarded to young people who make difference to their community and Tom was awarded the Fundraiser award for his Coast to Coast venture. We were all invited to the award ceremony which was broadcast live on air on the breakfast show. We were all so very proud of him.”

Over the past few years, Ollie Sloane has been actively fundraising to support BBS UK.   In 2015, Ollie, with the help of his family, hosted two family quizzes, an afternoon tea and a craft stall at a local garden centre. Ollie enjoys all different types of crafts and is lucky enough to have a craft studio at the bottom of his garden where he enjoys making and selling cards all year round; they can be viewed and bought via his Facebook page, www.facebook.com/ollie.sloane.

The quiz nights, which are held at a local cricket club, are great fun.  A family friend compiles the questions and Ollie sources prizes for a raffle from local businesses.   A fantastic £831 was raised from the last two quiz nights and Ollie is already planning more!  

Last summer, at the family home, Ollie’s family hosted an afternoon tea.  It was a lovely sunny day and the drinks and sandwiches were delicious.  A raffle was held, and each person paid £10 to attend.  The garden was beautifully decorated with colourful wicker chairs and bunting and everyone had a fabulous time, raising £465 in the process.

In December, Ollie, together with his family and friends, made all the products for a stall at a local Christmas Fayre.  The stall looked fantastic and was full of Christmas decorations, cards, candles, cushions and more. It was a magical atmosphere with lots of festive stalls and carols being sung.

We would just like to say a huge thank you to Ollie, his family and friends for their continued fundraising efforts, you are all wonderful

As a thank you to the LMBBS, following an appointment at the specialist clinic at Great Ormond Street Hospital, Zoey and Gary Teague, along with their children Freddie and Maisie (AKA Team Teague) decided to embark on a nine month fundraising mission to raise £5000 for the Society. They said, “We were taken back by the love and compassion shown towards us at a very difficult time by the members of Dr Beales team… …we are on a mission to go completely and utterly bonkers to do anything we can to raise the most amount of money for LMBBS.... …To give back and to be positive that future sciences and research could change this condition is amazing... …Maisie is our true inspiration, a totally amazing little girl who has hopes and dreams like all of us who live life to the full, we are doing this for her.

The family began training and planned their journey for the coming year, which would include: the London Duathlon, the Henley Half-Marathon, the Wokingham Half-Marathon, and the Reading Half-Marathon, finishing with the Brighton Marathon in April 2013.

Alongside this they planned further events such as a charity car boot sale, a spinathon, a race night/quiz night and possibly a charity recipe book.

Team Teague’s ‘marathon’ year began with the London Duathlon, Zoey wrote, “I'm pleased to say that we came away with four medals. The day was a mix of emotions. Maisie and Freddie blew us away with their amazing determination, we were very proud of them. Gary was sensational and it was rather emotional watching him put himself through endurance that I've never seen before. As for myself, I got through it - just about!”

The next event for Zoey and Gary was the Henley Half-Marathon, however training was leaving them tired and sore. Maisie kept them going and ensured they persevered with their training; Zoey said, “She's one in a million, I could never get away without running on my running days....she's on my case!”

In the meantime, Team Teague’s friends and family continued to support them, rising to the fundraising challenge and adding to their incredible amount raised; Leigh Morgan raised £360 competing in the Virgin London Triathlon, Lindsay Knox, and her gym group raised £5000 and Zoey’s mum ran a sponsored spinathon at David Lloyd Gym, Reading. Members gave up their locker £1s and another £300 was raised for the Society. Zoey’s Mum was ‘chuffed to bits’, so much so that she planned a sponsored rowathon for early the following year. Looking ahead, Gary's partner at work was committed to doing the London ride (100 miles) to raise more money for LMBBS.

Following the successful completion of the Henley Half-Marathon in October 2012, Zoey and Gary completed the Wokingham Half-Marathon in February 2013. This was to be followed by the Reading Half-Marathon before finishing with the ‘Big One’, the Brighton Marathon. Zoey in particular was finding it difficult, she said, “we have been running now for nearly seven months and can honestly say that I've never endured anything like this before; I'm tired, my body aches, I’ve had a few injuries along the way BUT I will flip the coin over and say that never have I done anything so rewarding in all my life. Surely if you take on a challenge in life it means just that, so I'm glad it hurts, I’m glad it's hard because at least we can say we went through hell to reach our final goal.”

Alongside the training, Team Teague turned their attention to a big charity race night, to be held in March. They managed to get a free venue, their local Post Office Club, and planned entertainment, a small auction and ‘the best raffle in town!’ Mum of ‘Team Teague’ helped with the organising and Maisie planned on selling pop corn, sweets and cakes. They had an ‘amazing evening’ and raised a staggering £1218 taking their total to around £3600.

Back to the running, completion of the Reading Half-Marathon saw personal bests for both Gary and Zoey and their attention turned to the fast approaching Brighton Full Marathon. Zoey said, “To say I'm scared is an understatement, we will do it, through blood sweat and tears. Maisie and Freddie will be waiting for us at the end.... they will be so proud of us, so that's what will get us through and with it being our last event… …our kids waiting for us... priceless!

Our huge congratulations and heartfelt thanks go to Team Teague, Zoey’s mum and all the friends and family who supported them over their Marathon Year. A truly inspirational group of people.