Bike for Behçet’s, Run for the Rare!

From 18th July around 17 people are taking part in a challenge in aid of Behçet’s UK. They will be cycling or running the distance between the three Behçet’s Centres of Excellence from the safety of their local areas – that’s 226 miles! Either individually, or as part of a team, each person involved will be completing the 226 miles over 13 weeks. This means covering 17.3 miles on the bike or on foot each week.

We are incredibly grateful to all who are participating in this epic challenge and wish you all the very best of luck!

You can donate to support some of those taking part at the links below.

Rachael Humphreys

John Mather

Amanda Chapman

Clare Gibson

If you’re taking part as well and want to share the link to your donation page with us so we can put it on the list above and on our social media, please drop us an email at info@behcetsuk.org and we’ll give you a shoutout!

July 15th, 2020

Amazon Smile App for iOS and Android

For those who shop at Amazon you can donate to Behçet’s UK while you shop at no extra cost with Amazon Smile and now this is available on both the Android and iOS apps.

Instructions for setting up the apps can be found here:

https://www.amazon.co.uk/b?ie=UTF8&node=17337655031

More information about Amazon Smile can be found here

https://behcetsuk.org/amazon-smile/

We are grateful to everyone who uses the Amazon Smile website to raise funds for Behçet’s UK – so far we have received £65 but we are hopeful that more could be raised if members could spare a few minutes to activate Amazon Smile in their Amazon App and ask friends and family to do the same.

Thank you!

June 29th, 2020

Coronavirus (COVID-19)

June 24th, 2020

Bags for Behçet’s

Our Trustee Catherine O’Hara has kindly made some beautiful and unique crochet bags which she is selling to raise funds for Behçet’s UK.

Catherine, who has Behçet’s, says that “crocheting has helped in the recovery from flares and in counteracting the anxiety of feeling ill and being unable to do much until the flare subsides. Crocheting has been my salvation over the past few years”.

The bags are all one-of-a-kind and are priced at £8 each plus postage and packing, which will be calculated on an individual basis.

Circular Bag Colours Front: Deep pink and orange Back: Yellow, orange and pink Width 8” Bag handle: 2 White, diameter 5” Height 8” Material Chunky Wool Extras
Large Wine Bag Colours Wine 8” Bag handle: 1 Amber Diameter 5” 9” Chunky Wool One colour Gold large button fastening
Peach Bag with  flower motif Peach, wine 8” Bag handle: 2 Amber Diameter 5” 6” Chunky Wool One colour  
Blue and Grey fur trimmed bag Blue, Grey, turquoise 9” 2 handles Black Diameter 5” 6” Chunky Wool Turquoise faux fur trim
Multi-coloured tweed effect bag Front: Aqua and Tweed Back: Lilac and Tweed 12” at bottom Handle: 1 Gold brown Diameter 5”   8” Chunky Wool Large Sea Green fastening buckle
Two tone brown and maroon bag Brown and Maroon 9.5” Handle: 1 Gold brown Diameter 5” 7.5” Double knitting wool Small gold button fastening
Pink and orange fan pattern bag Front: Pink Back: Orange 10” Handles:2 Cream rope style moulded handles Diameter: 6” 6.5” Chunky Wool  
Lilac Purse evening bag Lilac 7.5” Handles: Black Diameter 5” 7” Cotton Dark blue cotton lining
Blue, Green, Purple evening bag Blue, Green, Purple 5” Handle: 1 Amber Diameter:5” 6” Fine Japanese yarn Beading around opening Dark blue cotton lining

If you’re interested in purchasing a bag please email info@behcetsuk.org

June 12th, 2020

Do you have any ink cartridges to recycle?

Unfortunately, from October 2020 the Freepost envelopes for recycling ink cartridges through Recycle 4 Charity will no longer be able to be accepted by Royal Mail.

Therefore, if you have any inkjet cartridges at home you’ve been meaning to post to raise funds for Behçet’s UK, please post them in the next few months so that they arrive before October.

Behçet’s UK earn £1 for each wanted list cartridge so it really helps us and won’t cost you anything.

If you would like any more envelopes, you can request them for free here or if you sign up for membership, you’ll receive one in your welcome pack.

Thank you

May 27th, 2020

International Behçet’s Awareness Day

May 20th is #InternationalBehcetsAwarenessDay so we’re hoping that some of you might like to join in spreading awareness of the condition on social media throughout the day.

We have a few different social media assets you are welcome to share on your personal pages if you would like to. We’ve created versions of our diagram of symptoms for Facebook, Instagram or Twitter. Alternatively we now have a version of the diagram that includes the phrase, “I have Behçet’s. I may not always look ill but that doesn’t mean I’m not struggling with my symptoms”, to highlight that it is often an invisible condition.

We have versions of the diagram and the quote for Facebook, Instagram or Twitter.

Version for Twitter

Alternatively, we have also created some simple statement social media posts which you can download and share to help spread awareness. They are suitable for those with Behçet’s as well as anyone who supports our work.

Version 1:

Download for Facebook, Twitter or Instagram.

Version 2:

Download for Facebook, Twitter or Instagram.

We will be sharing these on our own pages tomorrow so you can always just retweet or share them directly from our pages @BehcetsUK

Thank you for your help!

May 19th, 2020

RAIRDA Survey – Please share your experiences during the Covid-19 outbreak

UPDATE 15/05/20 This survey has now closed but you can still contact RAIRDA to share your experiences.

The Rare Autoimmune Rheumatic Disease Alliance is a coalition of charities campaigning for the best care possible for people living with these conditions.

Filling out this survey will help them understand the issues that are affecting people living with a RAIRD (rare autoimmune rheumatic disease) in the UK during the COVID-19 outbreak and support their work to make sure people with these conditions get the best care and support possible.

This survey is anonymous and should only take a few minutes. There are a total of 13 questions, with 12 being multiple choice. Some questions can be skipped, but please make sure you click ‘submit’ on the last page to send your response.

You can find out more about RAIRDA on their website: https://rairda.org/

April 28th, 2020

Ideas for fundraising whilst at home

As a small charity with no government funding we rely on donations to allow us to continue our work in supporting those affected by Behçet’s.

Many fundraising events that were planned for this year are now unable to go ahead or have been postponed. We completely understand that many of you will have other priorities at the moment, but if you would like to help us out at this unprecedented time, we’ve compiled a list of ways that you could fundraise from the comfort of your home.

Why not challenge yourself whilst at home with one of these ideas?

  • A home-baking or cooking challenge –  you could try to bake or cook a new recipe each week.
  • Grow a beard or moustache.
  • Plan to do something special for International Behçet’s Awareness Day on May 20th to raise funds and awareness of Behçet’s. This could be a one-off like dye-ing your hair, a head shave (if you’re very brave!), a creative art challenge or a fitness challenge. Let us know if you are planning something special for the day.
  • A running/walking challenge, or some other kind of exercise challenge – Just a few examples could be doing some yoga every day for a month, walking up/down stairs a certain number of times or walking in your back garden – taking inspiration from Captain Tom!
  • An art challenge such as drawing or painting something every day for a month, or taking a photo every day.
  • A knitting/crochet/sewing/embroidery/other crafty challenge.
  • Learn a new fun skill such as origami or juggling.
  • Host an online quiz for your friends and family and ask them for a donation to enter.
  • If you have young children get them involved with sponsored skipping or silence or even enlist their friends for an online “Build the tallest Lego tower challenge”.

For more ideas and inspiration check out our page of amazing past fundraisers on JustGiving.

It is easy to set up a fundraising page on JustGiving to get your friends and family to sponsor you for an activity, but there are some instructions here if you need help. Setting up an online donation page can encourage additional donations from people that you don’t know personally, or from those who wish to give anonymously.

Don’t forget to let us know if you set up a JustGiving page and we will promote it on our social media for you. Sharing JustGiving pages on social media not only helps to encourage further donations but it also helps to spread greater awareness of Behçet’s amongst the wider public.

We fully understand if you don’t feel able to do any fundraising activities right now. However, if you still would like to support Behçet’s UK during this challenging time, here are a few other ways you can still show us your support (including some that won’t cost anything extra):

  • If you’re shopping on Amazon, start shopping through the Amazon Smile website instead and you can donate 0.5% of the net purchase of eligible items to Behçet’s UK at no extra cost to you. Further instructions are available here on our website.
  • If you’re online shopping from big brands such as John Lewis, Sainsbury’s, M&S, eBay, Etsy, Debenhams, Next, Asos, and many more, shop through one of these shopping websites and they will give us a small donation every time you shop at no extra cost to you. These websites work by generating commission which is turned into donations for charities like us. You can either shop through Give as you live, Easy Fundraising or The Giving Machine.
  • If you have some printer cartridges to recycle, post them to Recycle 4 Charity and they will give us £1 per every wanted cartridge received. You can request free envelopes from the Recycle 4 Charity website so it won’t cost you anything to post them.
  • Is it your birthday soon? Why not ask for donations to support Behçet’s UK though Facebook Birthday Fundraising? More information is available here
  • Do you want to send a handwritten note to someone during the virus outbreak? We are still selling our merchandise throughout the virus outbreak so you can order some of our photo notecards and then send a cheerful note to someone you are unable to see in person at the moment. A pack of 8 notecards is £6 plus £1.50 delivery. More information and the order form is available here. As well as notecards we have other items of merchandise still available.
  • You can still play The Weather Lottery each week, which gives you the chance to win up to £25,000 each week whilst supporting Behçet’s UK at the same time.
  • Receiving lots of post at the moment? Hold on to your stamps and send them to our member Malcolm, who kindly sells them to raise donations for us. When cutting out the stamps from the envelopes leave approximately ¼ inch of paper around the stamp. Malcolm also sells first day covers, stamped postcards and any other philatelic material. For details of where to send these please email info@behcetsuk.org
  • Not a member of Behçet’s UK yet? Join today for £20 a year and your subscription will help us to continue our vital work in supporting those in the UK affected by the condition. Membership has lots of benefits for you including a patient alert card, access to our members-only Facebook peer support groups, the opportunity to attend future AGMs and Family & Friends’ Days, plus many more. Find out more and sign up here. Membership is available for free to those in receipt of UK benefits or to those under the age of 18.
  • Donate online anytime on our website here or send a cheque payable to ‘Behçet’s UK’ to Behçet’s UK, Kemp House, 152-160 City Road, London, EC1V 2NX.

Thank you to all those who are helping to support Behçet’s UK in whatever ways you can during these strange times. If you have any queries about fundraising please email info@behcetsuk.org

April 23rd, 2020

Facebook help wanted

Are you a member of Behçet’s UK?

Do you have some time to spare?

Would you like to help to support others affected by Behçet’s from the comfort of your home?

We are looking for volunteer leaders for our Facebook peer-to-peer support groups.
https://www.facebook.com/BehcetsUK/groups/

Our Facebook support groups are still fairly new and are mostly relatively quiet, however in light of current circumstances we expect the groups to grow over the coming months as online support will become increasingly important. We have a group for each region of the UK so that members can more easily find others affected by Behçet’s who are living close to them.

Volunteer group leaders would represent Behçet’s UK by starting positive discussions, encouraging supportive conversation within the groups and ensuring group rules are followed. You will be supported by Behçet’s UK admin team and trustees.

Ideally we are looking for 2-3 leaders per support group. You can choose to become a leader of more than one group if you wish.

If you are interested, or would like to know more, please email us at info@behcetsuk.org with your full name and if your Facebook name is different, please tell us your Facebook name too. We ask that you are at least 18 years of age.

April 2nd, 2020

Tips for Behçet’s patients to manage anxiety whilst at home during the Coronavirus outbreak

We understand that many of you will be struggling at the moment so we’ve compiled a list of just a few suggestions of things that might help to distract you, and keep you feeling as calm as possible during this difficult time.

https://behcets.org.uk/wp-content/uploads/2020/03/BUK-Tips-for-patients-to-manage-anxiety.pdf

Follow our latest guidance regarding the outbreak here

March 18th, 2020

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