We have a number of donor drives coming up in 2018 we’re really excited about them… you can find out more about past and future events by going to the events section in the menu above
Yes! thats right, Leicester and Leicestershire as a region has recruited more lifesavers to the UK stem cell registry. The big hearted local community has stepped up to help. A very big thanks to our many partners, supporters and dedicated volunteers for making this amazing achievement possible, not to be forgotten of course are all those who have signed up ! It really has been a collective effort.
We want to stay at top spot and to help we’ve already launched a very special initiative ‘Leicestershire Unites’ we’re part of a unique collaboration between all three Leicestershire Universities and indeed a number of other establishments. We’ve already run a number of events to support ‘Leicestershire Unites’ with more in the ‘pipeline’… You can read more about it in the De Montfort University event press release where we formally launched the collaboration here…UNItes release FINAL
Look out for more information and events about Leicestershire Unites, coming soon!
Why are we trying to sign-up people to the UK registry? Click on the green tabs to learn some startling facts…
Someone is diagnosed with a blood cancer every 20 minutes in the UK... that's not in the world that's just here in the UK, that equates to 25,000-26,000 people a year!
For many of these desperately ill individuals a stem cell (bone marrow) transplant is their only hope of survival. In fact around 2,000 people in the UK need a bone marrow transplant every year, but there's a big problem...
There simply aren’t enough donors on the register... many of those desperately searching for a matching donor will never find one! They and their family and friends will have to watch helplessly as the disease takes it's course... but there could be a match walking around in their own community that could save them.
The situation is even worse if you are from a minority, minority donors make up a very small % of the UK register ( a % replicated on registries all around the world). So finding a match for a minority patient is an even greater challenge with only 20% finding the best match.
The real tragedy is that medical advances make both registration and donation such simple and effective processes, yet there still remains a shortfall in lifesavers, a situation that has persisted for years!
90% of stem cell donations are made using a process very similar to an extended blood donation, a process that takes about 5 hours and is undertaken as an out-patient.
Two thirds of UK patients won’t find a matching donor in their families. So they must find an unrelated donor through a registry like Anthony Nolan.
To join the Anthony Nolan register, you must be aged between 16 and 30, weigh more than 7st 12lbs (50kgs) and be in general good health, it takes just 10 minutes or so.
The blood cancer charity Anthony Nolan acknowledge the shortage… have a listen to this promotional radio sound bite…
What does the Rik Basra Leukaemia Campaign do?
The campaign works to increase understanding of the blood cancers and encourages informed registration onto the stem cell register. This is done in the main through awareness campaigns/presentations and the organisation of specific donor registration events within communiies and/or the signposting of potential donors to on-line donor registration.
The Origins of the Campaign…
Rik Basra is a family man from Leicester and as an Inspector with Leicestershire Police contracted acute myeloid leukaemia (AML), a form of blood cancer. Following an extensive course of chemotherapy he initially appeared to have beaten the disease. Two years later however the AML returned, as a consequence Rik had further chemotherapy, however this could only temporarily keep the disease at bay and a stem cell transplant was Rik’s only hope of survival.
The devastating news was compounded when Rik was advised that the register of potential stem cell donors was undersubscribed in the UK and to make matters worse registered “Minority” stem cell donors made up only 4% of already low numbers. Rik’s chances of finding a donor were statistically very slim.
The donor database for the UK is administered by the Anthony Nolan Charity, a search of this for Rik proved fruitless. The donor search eventually became international and thankfully a donor match was found in Germany just in time! Rik at least had a fighting chance to overcome this awful disease. Go here if you want to know more about Rik’s Story?
The On-going Issues…
Sadly there are many others stricken by blood cancers that don’t find a match, having gone through the trauma of chemotherapy they, their family and friends are left to face the anguish of watching the disease take its course knowing full well that there could be someone walking around within their own community that could give them a fighting chance of life. Unfortunately to date there has been too little done to mobilise the community to address this important issue… The Rik Basra Campaign has a simple aim…Increase the number of stem cell donors registered on the Anthony Nolan Charity Database. The campaign focuses on increasing awareness of blood cancers as an issue and improving understanding regarding the registration and donation process. The campaign recruits from all sections of the community but takes every opportunity to reach under-represented minorities with its life saving messages.
There is more than one registry’s currently operating in the UK i.e. Anthony Nolan, Delete Blood Cancer and NHS Blood and Transplant… The UK registry is administered by Anthony Nolan and anyone registering with either Anthony Nolan directly or Delete Blood Cancer or NHS BT will ultimately go onto the single registry… each organisation however have differing joining criteria and slightly differing registration methods.
The Rik Basra Leukaemia Campaign has worked with all three. Any registrations facilitated by the campaign are subsequently processed by these organisations and all post registration contact will be directly from them.
Why are there so few minority donors on the register ?
There is no obvious answer that comes to mind…more likely it is a combination of factors…Lack of knowledge of blood cancers as a disease and possibly a fear of the donation process itself, this has in the past been shrouded in myth and misinformation; whereas at one time it was an onerous process medical advances have now made it a fantastically simple and straightforward non-invasive procedure with no harmful effects for the donor.
The Department of Health has recognised the issue and has brought together a number of key stakeholders in an effort to better understand and address disproportionate outcomes for minority communities. The NBTA has been formed and the Rik Basra Leukaemia Campaign is a member…you can find out more here…
…so whats involved.
Two main parts to the process…
Registration… this requires no more than the completion of a simpleform and a mouth swab to enable tissue matching with a potential recipient. Learn more about donor registration.
Donation of stem cells… in the vast majority of cases (90%) is no more intrusive than an enhanced blood donation procedure. Learn more about stem cell donation.