Wednesday, 29 October 2008

Talking, talking and more talking.

At LLTGL, we talk a lot. In fact we're pretty good at talking. And we really do believe that talking is key in getting people to understand more about organ donation and transplantation. Recently we have been utilising this skill (yes talking is a skill honest) to spread the word, and some of you have been helping us do so.

As Jen detailed here, Emily went to Justgiving to give them an idea of what LLTGL do and about her story, then Emma went up to Liverpool and attended a study day for Medical professionals about organ donation, the logistics, and the importance of it, giving a fantastic presentation about LLTGL - who we are, what we do, and how we can help.

A week or two later, Emily disappeared off to Manchester to give a talk at a similar study day which was equally well received. Some feedback from these talks included:
  • "Emotive. Will stick in my mind. Very motivational for me to take action."
  • "Excellent presentations, very thought provoking, we must do more. Thank you."
  • "Organ recipients were extremely inspiring. As an ICU nurse I only see one side of organ donation which can be quite depressing and emotionally exhausting. To hear and see the other side of it makes such a difference and sheds a positive light on this topic and my experiences"
  • "Excellent seminar. We hear so much about the demand for donors and their organs. To physically see and share in these stories put this debate into context"

We give talks to anyone and everyone, and can tailor them appropriately. Do you have a workplace or group we could speak to? If so, just drop us a line and someone will get back to you asap to discuss things further.

On Saturday, Emily is heading to the Watford Colosseum to speak at a rather large gathering about the lack of people from an Ethnic Minority background on the organ donor register. Nehal spoke beautifully about her situation waiting and yesterday Oli and Emily went to Coventry (literally, not metaphorically) and had the most emotional but inspiring day...

More on that when the pictures are in. But for now - keep talking! Remember...

Think About it. Talk about it. Do Something About it.


Monday, 27 October 2008

Great News!

A few days ago we got some fantastic news we'd been waiting and hoping for; one of our Fabvocates, Holly Shaw had been called for transplant! The operation took place overnight and all went well. YAY!

It's very early days, but so far so good. The kidney is not yet working but apparently that is not unusual, so now it's a question of "wait and see" and hope that little kidney wakes up and starts working.

Holly is already sounding like her usual positive self but is feeling pretty sore and could do with some lovely wishes from our supporters. You can keep up to date with Holly and how she is doing on her blog.

Come on Holly - we can't wait to have you back and are thrilled for you!

Christmas Cards

This year, LLTGL are once again promoting the fantastic range of charity cards from the Daniel Courtney Trust, available here:

The charity supports awareness of organ donation and all Xmas cards promote the NHS Organ Donor Regsiter on the back (along with the contact details to sign up). The Daniel Courtney Trust is a fantastic charity who we are proud to be associated with. It was set up in memory of a gorgeous little boy called Daniel who was born with a condition called MVA and sadly passed away in 2005 after undergoing two liver transplants. Many of the DCT Xmas cards are designed by children and are great quality -- plus, every pack you buy really will make a difference -- what more could you want from a Chrsitmas card?!?

Sunday, 26 October 2008

The Worlds Biggest Walk comes to Middlesex

October 25 2008 saw the inaugural World’s Biggest Walk ( with people organising 5km walks starting at 12noon GMT all over the world. In the end, there were 109 walks in 18 countries across all 5 continents, including South Africa, Canada, Australia, China, Bulgaria and Nepal.

Live Life Then Give Life Advocate Nehal Shah organised her own Walk around her local area, so yesterday at 12noon a party of some 15 people set off from Stanmore Underground station and walked the full 5km around Stanmore and Edgeware, trailing big blue Organ Donation balloons and handing out leaflets.

Originally from Kenya, the Shah family are working incredibly hard to try to redress the balance in organ availability for people from black and Asian backgrounds. Although more likely to need organ transplants than the white population, only a tiny percentage of the black and Asian populations of the UK have signed the Organ Donor Register, leaving many people like Nelly, waiting for over 5 years for a kidney, in a very real purgatory with no knowledge of whether or not their gift will come.

Nelly has worked tirelessly for Live Life Then Give Life since becoming an advocate and we were delighted that Emily and Oli could be there with her to help her raise awareness and compete a truly ground-breaking global event. Both of the trustees, however, wish to point out that the work was done 100% by Nelly and her family and they just tagged along for the (rather energetic) ride!

Yesterday also saw the first outing for Live Life Then Give Life’s all-new media production unit. Consisting of Oli with the camera and Emily wandering around holding what looked like a dead cat on a stick, the video from the event will be up here shortly as the Charity secures its commitment to help raise even more awareness through documenting the events we take part in and are invited to.

Thursday, 23 October 2008

One happy Robyn's Rainbows recipient

It always puts a huge smile on our faces to hear from those who have received one of Robyn's Rainbows, especially when they are as smiley and happy as this handsome fellow below:

William, who is waiting for a small bowel transplant, has been having a tough and painful time recently with frequent and life threatening infections. It was awesome to read on his mum's blog that the surprise balloon we sent courtesy of our Robyn's Rainbows initiative put a huge grin on his face. To see more pictures and to read more about why we keep on campaigning for more transplants, head on over to

If you want to nominate anyone to receive this special surprise, insipired by our dear friend Robyn's unsuccessful wait for a transplant, please email emily at livelifethengivelife dot co dot uk.

You can also donate directly to our RR fund at our justgiving page here.

cheers loves

Wednesday, 22 October 2008

Cosmo Awards 2008

We at LLTGL were so proud to hear that our gorgeous founders, Emily and Emma, recently reached the shortlist of the Cosmopolitan "Women of the Year" Awards for their firm friendship that kicked off our amazing journey as a charity.

Two years on from Emma and Emily's decision to campaign for more organ donors, it is hard to believe just how important their friendship is to the direction we've gone. After losing many friends due to the devastating shortage of organ donors and Emily's subsequent listing for a double-lung transplant, they teamed up to try and change the desperate sitution. Their determination to stay focussed on working together towards their shared goal, despite Emily's transplant and complex recovery, continues to be an inspiration for the three of us that joined LLTGL last year.

Despite not winning the award in the end, we were so happy that they reached the final stages of judging as Emily and Emma managed to get the attention of Jamelia, Fearne Britton and Sarah Brown (Gordon Brown's wife)! We'll be sending them some T-shirts and trying to recruit them for our future events ;)

Sunday, 19 October 2008

Raising awareness for transplants around the world

This is just a quick reminder that the "World's Biggest Walk" kicks off this Saturday 25th October at 12 noon GMT. The event aims to raise awareness of organ donation and transplantation by encouraging the world to walk 5km across 5 continents.

The walk is totally free, and anyone can participate by walking around their local hill, forest, park, village, town or anywhere you can think of! You can organize your own walk, or join any of the ones listed here. You can raise even more awareness by easily writing to your local paper and asking them to feature it.

If you do take part, don't forget to send us some pictures of the fun!

Thursday, 16 October 2008

Update on Hol's campaign


Holly's campaign received 1697 votes and an astounding 183 comments on her Battlefront webpage, eventually finishing in second place!!!!! A hugest thanks to everyone who voted and left lovely messages about how organ donation has touched their lives.

The judges met earlier this week to decide who out of the 10 made the top 3, and we are pleased to report that Holly is one of them!

All we need to do now is hold on tight to see if Holly has made it to that coveted 20th spot, to be announced on November the 3rd

We can't wait that long!!!!!

Wednesday, 15 October 2008

The lovely Justgiving

Speaking about transplants is a key concern of ours as we think it is the personal stories from the heart that really motivates people to think about signing the organ donation regsiter and tell their family and friends about it. Whilst in theory most people see organ donation as almost a moral duty to society, it remains quite an abstract concept until you read or hear about a real life person and how the gift of organ donation can really change a person and their family and friend's lives forever.

It was a real treat this week therefore, when we got to talk to JustGiving about who we are and why we fundraise. Emily, true to form, was on hand to mobilize her amazing superpowers of non-stop-talking and came up trumps with an inspirational speech (which you can read about here on their blog)

We currently have two ways of raising funds for LLTGL via Justgiving. The first is our general page from which you can either donate money straight to us or you can set up an online fundraising page, email all your mates and raise money for us by doing something mad and crazy like running.

We also have a fundraising page that we set up to collect money specifically for our Robyn's Rainbows fund. This is an initiative set up by LLTGL after the death of our special friend Robyn, who lost her battle for life whilst waiting for a double lung transplant in September 2007, aged just 24. The Robyn's Rainbows fund is to give support and hope to people who are very sick or struggling in the form of a balloon to remind them that they are not alone and that sunshine might be just about to break through.
We are currently redesigning our website so that there'll eventually be a form so you nominate someone you know to receive a Robyn's Rainbow from us. In the meantime, if you know anyone who is struggling with any aspect of organ donation or transplantation and could do with a beacon of hope, please email Emily (via her blog).
lots of love,

Friday, 10 October 2008

A very important meeting

The weekend just gone was a really important one for LLTGL as we finally got to meet some of our very fabulous Regional Advocates!

For those of you that don't know, we at LLTGL have a network of voluntary "ambassadors". These are ordinary people who have a personal link to our main cause of promoting organ donation and transplantation that we at LLTGL constantly campaign for, and who are happy to speak to the media, appear at talks/events and generally raise awareness about transplants. Our advocates are all affected by transplants in different ways, but what they all have in common is their boundless enthusiasm for organ donation and unwavering support of our charity.

We were therefore pleased as punch this weekend when we got to meet four of these amazing people at a photoshoot held in Oxford, kindly organized for us for free by the very talented and super-awesome photographer Megan Laurie from ML Photography. Megan immediately made all of the advocates feel at ease and managed to get some really great shots of everyone larking about having fun and modelling our LLTGL T-shirts.

The shots will be featuring on the main site at some point soon, but to satisfy your curiosity in the meantime, check out the video of the shoot put together by Oli, featuring advocates Lisa Muscutt, Nelly Shah, Olwen Sawney and Audrey Eade.:

We were really sad that all of our regional advocates couldn't be there on the day, but hopefully we can grab them all for a piccie at some point -- we will be profiling each and every one, along with what they've been up to, so watch this space for the gossip!

Tuesday, 7 October 2008


One of our fabulous advocates Olwen Sawney (whose husband is waiting for a heart transplant) has sent us a great picture of people signing up to the organ donor register at Essex university Freshers Fair.
UK Transplant are currently taking their 'Superheroes' campaign around the country in a bid to get students signing up, and as you can see from this picture it looks pretty successful! Their Superhero-me invites people to create their own superhero character, showing that everyone can be a superhero and save a life by joining the NHS Organ Donor Regsiter. To take part, visit !!

Every year UKT take their roadshow around the universities but at the moment this is only limited to around 15. If you're interested in helping us get a group of volunteers together to man stalls (and especially if you've been affected by transplants and have a story to share) - give us a buzz!

Thursday, 2 October 2008

On the road

One of our key activities in helping to increase the number of organ donors is giving talks to various interested parties about the difference transplants can make, whether that is to local community groups, schools, medical conferences, hospitals and government departments. We at Live Life then Give Life are intimately connected to all kinds of people affected by transplantation and all of our trustees have had or will need transplants, and therefore we can speak passionately and knowledgeably about why transplants are so important.

This week therefore we were excited that Emma, along with Colin Prior from the Lewis Prior Foundation and Pauline Weaver from the Donor Family Network, were able to give a presentation at the Paediatric Symposium held at Alder Hey in Liverpool. This event was a really great opportunity for them to speak about transplants to a wide audience and was particularly important as a lot of people in attendance were those on the "front-line" of organ donation: Intensive Care and Accident and Emergency nurses who support the families of loved ones that have died or are on life-support.

Emma's 20 minute talk and PowerPoint presentation began with a little bit about our mission and history before outlining the huge problems with organ donation and transplantation that we at LLTGL are trying to tackle. We included a slide of 8 of our young friends we have lost due to the shortage of organ donors and to demonstrate just what spurs us on to keep going.

Emma and Colin Prior

Emma then passed over to Colin to tell his family's experience of his son Lewis Prior's wait in vain for a heart transplant. Colin's emotive speech so articulately demonstrated the need for more organ donors that a lot of the audience were in tears as they listened to his painful and emotional story. We are so grateful to Colin for having the courage to speak to such a large audience about the loss of his son Lewis. His talk had such a major impact on all who hear it and showed the stark and painful reality of the donor shortage in a way that we could have never done alone. If you get a chance, we'd be happy if you could visit the Prior Family's charity website set up in memory of Lewis at

Emma then concluded before passing on to Pauline to answer questions and talk about her experience as a donor family. The questions from the floor were enlightening as it seemed many struggled with approaching potential donor families at a time of such grief for fear of making the situation worse. Pauline's incredibly powerful reply was " How could it possibly make it worse? Nothing can get any worse at that point, you've just lost the most important person in your world, how will that upset you further? Its actually offering a glimmer of hope. Every family should have the right to be asked. All I knew was that I had the chance to give another family what I wanted so much but couldn't have."

The feedback from our section of the talk was incredibly positive. Our stall at the conference, set up with our leaflets, trolley coins, material from UK Transplant and Sue and Richard Cansdale's Transforming Lives book proved extremely popular and Emma got some good chances to speak and make contact with many of the conference attendees.

Finally, we were happy that Emma was able to meet up with Holly Shaw, one of our advocates, and her parents for a meal in Liverpool and to catch up on her Battlefront campaign, which is currently getting support in mind-boggling proportions! The USA transplant community is now aware of her need for votes and is piling them in, along with lovely comments too. If you haven't yet voted for her campaign, please pop on over and show your support with a vote and message about what organ donation means to you.

Emma and Holly