Searching the world for a donor

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Bronte

Searching the world for a donor

Postby Bronte » 11 Feb 2013 19:30

Sharon was first diagnosed with MDS 6 years ago. She told me as the years pass, to some extent you become slightly complacent, hoping the drugs will continue to work.. At Christmas, she recvd the devastating news that her MDS had turned to AML and she needed a BMT. Her son and daughter immediately resorted to social media, desperate to find a match, for their mum. Their media campaign has been relentless. Visitors to the MDS UK website have increased in their thousands. If I had to describe Sharon and her husband Stephen, three c's spring to mind. CARING, COMPASSIONATE and COURAGEOUS. They helped set up the MDS Support Group, shortly after Sharon's diagnosis and Stephen, as a partner of Baker Tilly, contributed funds to the Register to be a Lifesaver Programme, via Anthony Nolan, which encourages young people to save lives through blood stem cell donation.Sharon is pleased that the publicity is helping to raise much needed awareness for MDS. Sharon's situation is also mirrored by many other families.Lyn Britton's daughter recently posted that her mum is also in urgent need of a BMT. The inspirational youngster Alice Pyne (17) recvd an award at the Pride of Britain Awards last year and highlighted the need for an increase in the donor register and a rethink about organ and bone marrow donation in this country. Anthony Nolan confirmed that she persuaded over 40, 000 people to join the register. Truly amazing, as are other young people that have joined the student marrow forums throught their universities and six form colleges.Prepared to ignore the myths that surround blood stem donation and listen to the facts.Inspired by Jonni and Caroline's campaign, I felt compelled to help, but as a facebook newbee, a non tweeter and a person that frequently crashes the computer, no mean feat. Luckily, living in a village with a real sense of community and a tea shop with wi fi, everyone has been keen to put forward suggestions. Soon we were in touch with football clubs, journalists and celebrities with Twitter accounts with thousands of followers. The Beardyman beetbox video which has been created for the Anthony Nolan site has had had 25,000 hits in days. I would attach the link, but with my IT skills, best left to Sophie or Chris. Beet boxing is a great way to spread the message via the universities for young people to help join the register. It's great news that Robin Roberts the anchor for Good Morning America has made a remarkable recovery following a BMT transplant, which she underwent as a result of treatment for MDS last Sept. Together, hopefully we can spread the word, help the raise the profile for MDS and more importantly find donors for Sharon and Lyns mum. Lets get tweeting etc
Bronte
Last edited by Bronte on 12 Feb 2013 14:59, edited 1 time in total.
chris
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Location: Essex
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Re: Searching the world for a donor

Postby chris » 12 Feb 2013 14:24

Hi Bronte

Thanks for the update. We are all very fond of Sharon and Stephen and owe them a lot for setting up our Support Group for MDS patients. The Beatbox video link is on our own site too. See:


http://www.mdspatientsupport.org.uk/search-for-a-stem-cell-donor/

Also anybody on Twitter can check out #Spit4Mum. Maybe we older ones (!) can get our kids to re-tweet their friends to reach the younger men needed to become donors.

Best wishes

Chris
Chris. (F) Age 65. MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
murrayfs
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Re: Searching the world for a donor

Postby murrayfs » 20 Feb 2013 20:57

We're all thinking of Sharon and her family at this difficult time and keeping everything crossed for a suitable match. This is an issue very close to my heart, not only because I know Sharon personally, but also because I know that I too, do not currently have a suitable match on the donor registry because of my rare tissue type. I'm not in the position of needing a BMT at the moment, but could be at some point in the future, like Sharon.

Her children Jonni and Caroline have been doing such a great job to raise awareness through the media and social media - this campaign has been great in terms of raising awareness and increasing the number of people on the donor registry, and we only hope that some of the people being tested at the moment might be a possible match.

There was an article in the Daily Express this week which was really good:

http://www.express.co.uk/life-style/hea ... our-mother

We continue to hope and pray for a successful outcome
xxxxx
Fiona - Female, age 51, diagnosed in 1999 with MDS 5q-. Currently taking Revlimid (Lenolidamide)
Bronte

Re: Searching the world for a donor

Postby Bronte » 05 Mar 2013 14:47

Just to advise that on the 6th March, 2013 after Prime Ministers question time, Seema Malhotra is calling on the Secretary of State for Education, to consider introducing educational sessions in schools and colleges in England for 16 - 18 yr olds, to help them understand how potentially they could become a lifesaver by joining the bone marrow register.

Currently, there are 1600 people in UK, waiting for a bone marrow transplant, only 30% have a sibling match. The fantastic success story of Robin Roberts has highlighted the powerful possibility of having a bone marrow transplant and has helped to increase the registers in the States, by dispelling the myths which surround stem cell donation.

The reality, is that 70% of people are relying on a perfect stranger to give them a second chance and there is a dire need for more matches.

Lets hope that the 10 minute motion promotes further debate / action.

http://www.anthonynolan.org/News/PARLIA ... 3&month=03
http://www.parliament.uk/edm/2012-13/1126
Love and best wishes to Sharon and her family
Bronte
janetstanford
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Re: Searching the world for a donor

Postby janetstanford » 06 Mar 2013 09:45

Hello Bronte
About a month ago similar happened at my Daughters school people from Anthony Nolan visited and completed a talk about donation and then tried to encourage pupils from the 6th form to sign up some did inc my daughter ...i do hope this happens nationwide as at present it is down to the charity or the staff at the school to allow for several reasons ....i had a conversation just last night and people still think that the only way to donate is by a bi-op which most people think of as AGONY which as we all know it can be (and after 5 i can give references)
The only way forward is by education to dis -spell the myths and by doing this so many more lives will be saved
I do hope this is rolled out nationwide :)
Janet
Jayne
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Re: Searching the world for a donor

Postby Jayne » 11 Mar 2013 15:29

Hi

I am now a volunteer for Anthony Nolan, Register and Be a Lifesaver.

Last week we were in Huddersfield New College all week, giving talks to all their 16-18 year olds. We spoke to 780 pupils in total about blood, organ and stem cell donation.

We are holding a spit clinic this week and we already have 145 pre-registrations to join the Anthony Nolan register. We have also been notified that 101 pupils have registered to donate blood.

This is voluntary and does require the college to be on board. This doesn't always happen and it can sometimes be a bit mis-managed by the colleges if I am honest.

Anthony Nolan and R&Be want to make it compulsory that all 16-18 year olds are educated and informed of how to donate blood, organs and stem cells. We are not there to twist their arms just to educate them on the importance and let them make an informed decision. (This was why we were in Parliament)

Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.

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