News

Raising Awareness of Lupus with our MPs.

Please see our new page with a pro forma for a letter to raise awareness of Lupus and the issues that matter to you with your local MP. October is Lupus awareness month and the right time to make our MPs aware!

Cambridge Building Society Community Award Night

Took place at the Felix Hotel in Cambridge. 15 charities took part in the final and received their award from the £12,000 kitty. The size of each

award was in proportion to the number of vouchers collected by the group. Our award was a wonderful £709. A massive thank you to Cambridge Building Society and the Cambridge Evening News and to Helen and Lara for representing CLG.

Donation from Waitrose & Partners

CLG was selected as one of the charities for the Trumpington Waitrose & Partners Community matters Scheme for July. There were 3 charities that were voted for by using the green discs given to customers at checkout.

One of the other charities was “Guide Dogs for the Blind,” so we had a great result in receiving £284.00.

A great big thank you to Waitrose & Partners  for their donation to us and for running the scheme.

Please help Pembrokeshire Group

We have been contacted by Wendy from our new Pembrokeshire Lupus Group. Her email is below and please ask you friends to sign as well.

Hello

I run the relatively new Pembrokeshire Lupus Support Group and I was wondering if you would be willing to share my petition link with your members?

If you have any queries, please do not hesitate to ask me.

Thank  you.                                                                                                                                                                                               

Wendy Diment

https://www.change.org/p/secretary-of-state-for-health-at-the-welsh-assembly-government-campaign-for-access-to-specialist-lupus-care-for-people-living-with-lupus-in-pembs-wales?recruiter=889439093&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition

 

We need your Tokens!!!

Thank you to all who voted for us and we have succeeded in reaching the final  round.

So between the 24th July to the 10th August we need to collect tokens from the Cambridge evening news, the more tokens we can collect the bigger the share of the £12,000 Cambridgeshire Lupus group will receive.
Please can everyone who has or knows someone that has the Cambridge evening news save them for us between the dates above so we can arrange collection or by sending them in a prepayed envelope.

Thank you.

We need our votes!!!

CLG has entered the Cambridge building Society Cash for the Community Competition for a slice of £12,000 donation available to local charities and help groups. To move into the next round we need as many votes as possible made via this link. https://www.surveymonkey.co.uk/r/cashforthecommunity18. Please share this link to your friends so that we may gain as many votes as possible. Closing date for this round is Wednesday 18th July 2018.

Very Sad News.

We share the very sad news that Shirley Smith passed away peacefully at The Arthur Rank hospice on Thursday 7th June,  after a battle with cancer.

Shirley had been a committee member for many years and regularly came to the coffee and chats. She will be sadly missed.

The family would like to welcome you to the funeral on 27th June at 12.00,  St Andrews Church, Swavesey, then the Cambridge crematorium followed by refreshments at The White horse pub, Swavesey.

Flowers or donations to CLG. Thank you

 

Please help us!

Most of you know that after several years as Chair, Shelagh has stood down from our committee.  Although we are really lucky to have quite a few other committee members, we urgently need to re-think and re-group the committee. We didn’t have an AGM this year due to illness, work commitments and family issues so officially all the remaining committee members are serving in an interim role only and we really need to organise an AGM and get the committee back on track.

We need your help – many hands make light work and we would welcome additional committee members in any role.  The workload isn’t huge – we mostly communicate by email and phone so it’s not a case of constant meetings etc.

A few of our supporters have indicated that they would be willing to help, so what we would like to do is have a very informal get together with anyone willing to become involved – whether it be in an ‘Officer’ role, helping with the newsletter, awareness raising, acting as a point of contact for the press and pharmaceutical companies, to give lupus presentations to local clubs and societies, to come up with fundraising ideas or simply to contribute ideas to lead the group forwards. Davina and Lara will organise it, they just need to know who is interested in supporting us, and what days/times would suit most people. We will even provide refreshments.

We are extremely proud of what we have achieved over the past few years – our group is one of the most successful and active in the country. We helped to secure the post of a specialist lupus nurse at Addenbrooke’s, our Information Days and AGM’s have always attracted the largest audiences, we have excellent relationships with the wonderful lupus teams at Addenbrooke’s, Hinchingbrooke and Peterborough hospitals, we are asked to attend events organised by pharmaceutical companies and the NHS and our ‘coffee & chat’ get-togethers are well attended.

So, where do we go from here?  We need new ideas and enthusiasm – let’s make those blank stares from people when we say we have lupus a thing of the past. Without additional input our group is in serious danger of having to close.

Please get in touch!!

If you can help in any way please contact:
Davina – Tel: 01954 211679
Lara – Tel:  01954 210765
or email us at
cambridgeshirelupus@gmail.com

‘Living with lupus’ videos for Lupus Awareness Month

For Lupus Awareness Month, Shaista and Colette, who both write regularly for our newsletter and have been wonderful supporters of our group decided to make a couple of videos about the challenges of living with lupus. Click the links below to see the videos.

A Conversation Between Colette and Shaista Part I – Lupus at Birth. https://youtu.be/Lu5BzDfjqQA

A Conversation Between Colette and Shaista Part II – Lupus & Language. https://youtu.be/UMpMtRGBYQk

These two videos received a great response, so Shaista asked Daisy (who writes regularly for our newsletter) to take part in another conversation on different subjects. They have just completed two videos – you can watch them by clicking on the links.

A Conversation Between Daisy and Shaista Part I: Teenage Lupus, School & Social Media https://www.youtube.com/watch?v=1RBjqFAQsbo&t=1335s

A Conversation Between Daisy and Shaista Part II: Mental Health With Lupus, PIP & Cosplay! https://www.youtube.com/watch?v=sv4x2ClNGn0

Many thanks to Colette, Shaista, Daisy and Shaista’s Mum (who filmed the conversations).