MDS UK

Are you Fit to Spit ?

DEC 2013

An update on the Sharon Berger #Spit4Mum Campaign, led by her children Jonni and Caz, to increase stem cell donations amongst the Jewish community (Dec 2013).

FIT TO SPIT clip – Beatbox style!

All you young fit men out there – we still need your help.

Here is why:

Our fantastic treasurer – Sharon Berger – is now unfortunately in need of a stem cell transplant – and needs a suitable donor URGENTLY.

No perfect match has been found since mid-December – so we are searching for new donors, in the hope to find a better match.

Sharon was going to start azacitidine – whilst waiting for a suitable donor – but due to a severe infection over Christmas, the azacitidine treatment was not possible.  She has now had to start chemotherapy instead.

If a suitable match is not found in the next 6 weeks, Sharon will need to take the risk of going ahead with a bone marrow transplant with either cord blood or her son’s stem cells – both not an ideal match.

This means the risk of complications and the bone marrow failing is much higher and chances of survival quite lower.

Even with a perfect match, transplants can fail.

So… here is what you can do to help:

Register as a donor on the Anthony Nolan registry if you are aged 16-30 years old.  You will be sent a spit kit – very easy.

http://www.anthonynolan.org/What-you-can-do/save-a-life/Online-application.aspx

General enquiries: 0303 303 0303

If you are already on the registry – make sure your contact details are up to date.

Aged 18-55 ?  Delete Blood Cancer – Donate Stem Cells

Delete Blood Cancer UK -Tel: 020 3176 7660

Or contact the British Bone Marrow Registry:
http://www.nhsbt.nhs.uk/bonemarrow/qa/index.asp#howcan
They accept donors up to the age of 50 years old – if they are registered blood donors.

Any questions call the Donor Helpline: National Blood Service 0300 123 23 23

If you or someone you know is expecting – the cord blood can be donated at birth – just need to register at http://www.nhsbt.nhs.uk/cordblood/

If you can’t donate in person: Please share this page as widely as possible.

Your action might help to increase Sharon’s chances of a successful transplant.

You can encourage people to register as a group, with colleagues, neighbours, fellow students.

Below you will find further information about donating stem cells – which can save someone’s life.

Do something amazing – and give the gift of life to someone who needs it urgently – be it your family, friends or a complete stranger.

All further details are explained on the Anthony Nolan website – incl how to register, what happens if you are a match for someone, the 2 options for donating and how you will feel. http://www.anthonynolan.org/What-you-can-do/save-a-life.aspx

As Sharon is of jewish origin – The Jewish Chronicle – and the jewish community is particularly keen to help.

As TJC article below specifies, Sharon’s best match would be an Ashkenazi Jew, with heritage from Russia and Lithuania.  But we encourage everyone to register and check if they might be the match she needs.

17 Dec 2012

Sharon will be having 4 weeks of chemo first to reduce her blast count – then move onto the stem cell transplant.

Thank you for helping us help Sharon – and many others who need their perfect donor match.

UPDATE 20 Dec 2012

As no suitable donor has yet been found – Sharon will be starting a 3 month treatment with azacitidine – in the hope to slow down the progression of the disease – and to buy more time before the transplant.

We hope to find a better match in those 3 months.

Please don’t stop sharing this information!

Update 08 Jan 2013

Still no good donor – despite many people coming forward.  We need to pursue the search urgently.

Azacitidine treatment not possible, as Sharon had a severe infection over Christmas.

She now had to start chemotherapy.  Thank you.

 

If you are connected to students – please tell them about the search.

 

 

 

   

Totally Jewish.com:
http://www.totallyjewish.com/news/national/c-19196/race-against-time-to-save-mum/

http://totallyjewish.com/the_jewish_news/view/c-19200/jewish-news-jn-776-10012013/ (link expired on website)

London Standard article – 11/01/2013

Lucy Tobin: Mock all you like but social media can be a considerable force for good
Lucy Tobin - Published: 11 January 2013
Standard – Lucy Tobin – Social Media – a force for good

The Londonist
www.londonist.com/2013/01/things-to-do-in-london-today-15-january-2013.php

“A new section in which we highlight a different charity or appeal you might be interested in. Send ideas to matt@londonist.com

Every day in this article, we highlight the places in London where you can donate blood in London. But have you heard about blood stem cell donation? Those with leukaemia and other blood diseases can be saved with bone marrow transplants, but they need to find a donor with suitable cells. If you’re 16-30, the best thing you can do is join the Anthony Nolan register. You’ll be sent a ‘spit kit’ so the lab chaps can work out your cell type, which then enters their database to aid the hunt for future donor matches. Those over 30 can also donate, but should discuss it at a blood donor clinic first. You could be the last chance for someone on death’s door. This appeal was nominated by Jonni Berger, who’s currently seeking a donor to help his mum Sharon Berger (Twitter campaign #Spit4Mum).”

Here is a clip on what it means to donate stem cells:

 

This lady for example would not be here today if not for the donation of some stem cells by a complete stranger:

Twitter: Hashtag #Spit4Mum – set up by Sharon’s children.

Spit4Mum

This is Sharon’s son’s Facebook page:
Jonni Berger

www.facebook.com/jonnibgood

Here is a further collection of press articles around the Sharon Berger donor campaign.Her children Jonni and Caroline have been working tirelessly to give interviews and set up donor registration events all over the country.

Sharon had intensive chemotherapy – and is battling on – and the search for a donor continues so that the transplant she so desperately need can go ahead.

Wanted: Bone marrow for Jewish mother
By JPOST.COM STAFF – 01/13/2013 18:03
London family turns to social media to help find donor for mom undergoing chemotherapy. http://www.jpost.com/JewishWorld/JewishNews/Article.aspx?ID=299437&R=R1

Click here for Facebook page – MDS UK Patient Support Group.

http://totallyjewish.com/the_jewish_news/view/c-19200/jewish-news-jn-776-10012013/ (link expired on website)

Wanted: Bone Marrow For Jewish Mother
London family turns to social media to help find donor for mom undergoing chemo
Jewish Herald Article

BBC – Sick woman’s appeal sparks rise in Jewish bone marrow donors
Sharon Berger will need a donor of Ashkenazi Jewish heritage
The number of Jewish bone marrow donors registered with a charity has risen by 985% as a result of a campaign to save a terminally ill woman.
30 January 2013 Last updated at 06:25
www.bbc.co.uk/news/uk-england-21250095

ITV
www.itv.com/news/london/story/2013-01-14/bone-marrow-needed/

BBC – Urgent plea for bone marrow donor
27 January 2013 Last updated at 13:06
www.bbc.co.uk/news/uk-england-21219684

BBC – London siblings’ bone marrow Twitter plea boosts Jewish donors
19 January 2013 Last updated at 16:53
www.bbc.co.uk/news/uk-england-london-21089305

Race Against Time to Save Mum’ - 10 – 01-2013
Comments Off by: stephen-oryszczuk in: National,News
The family of a mum-of-two from Kenton, who is undergoing last-ditch treatment for a rare form of cancer, this week made an urgent plea to young Jewish News readers to register as bone marrow donors.
www.totallyjewish.com/news/national/c-19196/race-against-time-to-save-mum/

THE JEWISH CHRONICLE ONLINE
Life-saving drive starts for bone marrow
By Anna Sheinman, December 17, 2012
www.thejc.com/community/community-life/94158/life-saving-drive-starts-bone-marrow-donor

Jerusalem post

Wanted: Bone marrow for Jewish mother – By JPOST.COM STAFF
01/13/2013 18:03
London family turns to social media to help find donor for mom undergoing chemotherapy.
www.jpost.com/JewishWorld/JewishNews/Article.aspx?ID=299437&R=R1

www.totallyjewish.com/the_jewish_news/view/c-19200/jewish-news-jn-776-10012013/Expired link

METRO – Cancer sufferer needs rare bone marrow donation within six weeks to save her lifeWednesday 16 Jan 2013 12:27 pm
www.metro.co.uk/2013/01/16/cancer-sufferer-needs-rare-bone-marrow-donation-within-six-weeks-to-save-her-life-3354464/

Brother and sister battle against the clock to find bone marrow donor to save their Kenton mother’s life – 11:15am Thursday 24th January 2013
www.harrowtimes.co.uk/news/10182748.Brother_and_sister_battle_against_the_clock_to_help_save_mother_s_life/

Twitter appeal boosts bone marrow register
Thursday, 24 January 2013
www.barnet-today.co.uk/News.cfm?id=2484&headline=Twitter%20appeal%20boosts%20bone%20marrow%20register

nolan spit4mum

ANTHONY NOLAN – on the Sharon Berger Campaign

www.anthonynolan.org/News/SHARON-BERGER-CAMPAIGN-LEADS-TO-500–INCREASE-IN-J.aspx

Beatboxing’s Beardyman, Reeps One and MC Zani join up to save a life
Monday, January 28, 2013
www.anthonynolan.org/News/UK-BEATBOXING-CHAMPIONS,-BEARDYMAN,-REEPS-ONE-AND-.aspx?year=2013&month=01

BUSHEY UNITED SYNAGOGUE
www.busheyus.org/index.php/latest-news/178-project-chesed-bone-marrow
(link removed)

Urgent Appeal from Project Chesed: Help Save A Life – Posted: 01/03/2013
http://youandus.theus.org.uk/chesed/project-chesed/help-save-a-life/

2013-01-16 08.08.02

“ Today I’ll be spitting with Beardyman to save a life. Find out how u can be a match here #spit4mum http://thndr.it/X8aBFO
www.thunderclap.it/projects/1142

REFORM JUDAISM – Search for a stem cell donor – Tuesday, 08 January 2013
http://news.reformjudaism.org.uk/press-releases/search-for-a-stem-cell-donor.html

LIBERAL JUDAISM
 www.liberaljudaism.org/news/711-join-the-bone-marrow-register.html

Faye Barker’s Sunday blog
by Faye Barker – last updated Sun 20 Jan 2013
www.itv.com/news/london/2013-01-20/faye-barkers-sunday-blog/

Mother urgently seeks bone marrow donor
by Press Office posted in Community
www.bod.org.uk/live/content.php?Item_ID=130&Blog_ID=690

Bone marrow donor needed urgently to save mum’s life
5:33pm Friday 25th January 2013 in News www.oxfordmail.co.uk/news/10187161.Bone_marrow_donor_needed_urgently_to_save_mum_s_life/

Search for life-saving donor widens
11:00am Tuesday 29th January 2013 in Oxford
www.oxfordmail.co.uk/news/yourtown/oxford/10190305.Search_for_life_saving_donor_widens/

Brother and sister battle against the clock to help save mother’s life
11:15am Thursday 24th January 2013 – By Emma Innes
www.thisislocallondon.co.uk/whereilive/northwest/harrow/10182748.print/

www.peoplewithvoices.com/2013/01/14/mother-of-two-urgently-needs-bone-marrow-donor-to-save-her-life-can-you-help/ (link removed)

Bone Marrow Donors Needed In Oxford – 27th January 2013, 08:00
www.heart.co.uk/thamesvalley/news/local/bone-marrow-donors-needed-oxford/

Jewish Daily Forward:
Family Takes to Twitter To Find Bone Marrow Match

www.forward.com/articles/169481/family-takes-to-twitter-to-find-bone-marrow-match/

ALYTH
www.alyth.org.uk/index.php?option=com_content&task=view&id=788&Itemid=104

LIBERAL JEWISH SYNAGOGUE
www.ljs.org/a-place-of-prayer/thought-of-the-week/1015//

Let’s Talk London
www.cityangelradio.wordpress.com/2013/01/30/plea-for-bone-marrow-donor/

Articles also in Jewish Tribune (US), Jewish Telegraph (North UK), Sunday Mirror.

Sharon’s daughter in law – Miriam was on BBC Radio London talking about the campaign and advertising the screenings: www.bbc.co.uk/programmes/p0144yl2

Sharon’s daughter in law – Miriam was on BBC Radio London talking about the campaign and advertising the screenings: http://www.bbc.co.uk/programmes/p0144yl2

Sharon - registration times

There are also a number of screenings at schools and in different companies and locales that have been arranged already.


Update 04/03/2013

Sharon is having another round of chemotherapy – to gain a bit of time to allow for more searches for a bone marrow donor.

Many registration events are still being set up all over the world – but unfortunately – so far none that fit Sharon’s origins.

If you know people that could potentially fit the profile – do please encourage them to register – they could be the match that Sharon needs.

It is a question of weeks – not months. Please don’t delay acting on this.

MORE INFORMATION AND VIDEO CLIPS ON  STEM CELL DONATION – incl what it means for donors:

http://www.mdspatientsupport.org.uk/news/bone-marrow-donation/

The latest supporters of the Spit4Mum campaign: BEARDYMAN, REEPS ONE & MC ZANI BEATBOX TO SAVE A LIFE