Monday, 29 June 2009
Dr Bree Foley is working on the research, originally pioneered in a clinical trial in Italy in 2002. Unlike a standard bone marrow transplant, which replaces the patient’s leukemic bone marrow with uninfected but otherwise identical bone marrow, the research Dr Foley is working on allows marrow with the correct kind of partial match to be used instead.
To read the whole story click here:
Shannon MacKenzie, 12, and Rachel Cameron, 13, struck up a friendship while they were both in the Sick Kids Hospital receiving treatment for Leukaemia.Even though both were undergoing punishing treatment, they set aside significant amounts of time to create products for the hospital's Summer Fair.So far, £600 has been raised, but with more cash to be collected the girls are hopeful of hitting the £1,000 mark, with some of the money going to help the refurbishment of the oncology ward.
Well done to you both for a fantastic effort :-)
The father-of-two's chances are complicated by finding a donor with the same Anglo-Mauritian background to his own.Chris's wife, Sarah, said "It's really difficult to watch somebody you love going through an ordeal like this."I would urge everyone to consider joining the register because even if they can't help us, they may be able to save another family from the heartbreak that we are experiencing."Volunteers in the UK can apply directly to the Anthony Nolan Trust and if there is a match Chris's consultant will be informed.For more information visit http://www.anthonynolan.org.uk/ or call 0207 2841234.
Chris spoke frankly to our reporter Daniel Darlington about the effect his illness is having, and how the public can help with vital bone marrow shortages in ethnic minorities.
Friday, 26 June 2009
Funny and ridiculous "Private" Plates
The true "proof" that the Elvis effect is in operation is when the mourning continues for an extended period....sometimes months,sometimes years, but in true and emotive cases the effect can last for decades.
As i said in my last post, the loss of MJ is a very sad and poignant time for many, but the press are (as usual!) up to their normal "force feeding" regime of continually feeding the public an unrelenting stream of video, tributes,news clips etc which, in the first instance, is wholly acceptable and would be expected of due to MJ's image as the "King of Pop", but after a while it starts to get a little tedious...like Chinese water torture.
On Facebook it took less than 10 hours to set up a special group (MJ 1958-2009 RIP) and within the first 15 hours it had signed up over 10'000 people into it.
Other celebs wasted no time in getting on to Twitter to express their "public" condolences although it seems like some perhaps had no real contact with the Jackson family before his death...but hey, who is to know that?.....gaining public respect by tenuous association maybe ?
Farrah Fawcett (Charlies angels) sadly died of cancer also on the 25th, but she led a much more quiet and private life......how many video clips have you seen of her today?
(Here is a link to the story of her sad loss) Farrah Fawcett
Watch out for "The Elvis Effect",but this time in the much more svelte shape of MJ....coming to a record store or tribute act near you....soon .
No matter what you may have thought of this eccentric singer/songwriter and all round performer,christened with the nickname "Wacko Jacko by the press, Michael was undoubtedly an icon of our times.
I must admit as to being personally rather sad at the news of his untimely death,and no matter what you thought of the guy, i bet that you can name at least one of his long list of hit songs.
R.I.P Michael Jackson 1958-2009
Thursday, 25 June 2009
Well I have just got in from the second Anthony Nolan Trust Event at King's Mill Hospital, and may I just first say a great big THANK YOU to all of those wonderful people that made the effort to attend the session.
Now although some folk were not able to join the register due to not being able to meet the criteria, let nothing be taken away from them for the kindness,thoughtfulness and commitment that they showed in coming anyway...you should still be very proud of yourselves for having the mind to at least try :-).Thanks.
Loads of thanks also to the contingent from the West Nott's College, who arrived by minibus just after 3pm and bolstered our attendance figures.....well done to you all for coming over to KMH at such short notice.
Hang on...mini me wants me to cook some burgers for him at the mo...i will complete this post shortly........watch this space :-)
Wednesday, 24 June 2009
Well, the first Anthony Nolan Trust clinic held at Newark Hospital has now been completed, and I am glads to say that out of the 40+ people that attended, around 30 made it on to the register :-).
As I was already at Newark carrying out some work at the hospital, i was first in to get the area ready for the event. Having established the fact that we had access to the Internet on the couple of PC's in the area, i logged on and navigated to the Anthony Nolan site (so people could have a look around if they so wished, to gather more information about the charity). Later I was offered the use of a 32" LCD tellie with a built in DVD, and this was utilised to play the ANT promo film called two lives (you can see it in one of my earlier posts..it's fab!), which yet again was set up so that people could get a good idea as to what the ANT are about....Coldplays track "Fix You" is a great song too !
Nigel and his colleague (sorry,didn't get her name !) arrived at approx 2:30 and furnished the place with banners, leaflets and the essential blood testing paraphernalia, then after a quick brew, the first volunteers arrived shortly after 3pm.
The evening ended at approx 7.15pm and we all agreed that for the first event of it's kind at Newark Hospital, it had been a great success :-)
Many,many thanks to all of those who attended the event, and also to all those who gave their time to make it all happen. you are all stars to me :-)
Roll on King's Mills event 2morro............get in there :-)
Thursday, 18 June 2009
This is the information about the video and the award that it received (www.anthonynolan.org.uk)
Charity honoured by the IVCA
The Anthony Nolan Trust has been honoured by the IVCA (the professional body for the visual and communications industry) for promotional film 'Two Lives', which was made last year.
The film was nominated in four categories:
The film was highly commended in the Best Editing category
The film was awarded a BRONZE in the Public Relations category. The judges said, "This film is extremely moving. The choice of music track coupled with powerful character direction ensures the important messages offer a clear call to action. This is an innovative charity film"
Nick Bye was awarded SILVER in the Best Direction category for the film. The judges said, "Emotive, incredible, enigmatic and very connected. This is a stylised and beautiful film".
Coldplay were awarded GOLD in the Best Music category for the film. The description of the film provided by The Edge Picture Company (who made the film): The film was conceived with this specific track in mind but was impossible to clear, even for charitable purposes. The band was approached and said no. We persevered and sent through a rough cut with a begging letter for them to at least watch it. After stressful days we heard Coldplay would make an exception and said they "were proud to be associated with the film". The judges said, "The producers' commitment to fighting for permission to use the track was entirely vindicated. An absolutely spot on decision to argue for the use of this track. Not only does the track elevate the piece, the visuals are a match. A clear winner".
This is a fantastic result for a film that has been very well received and continues to move and touch audiences wherever it is shown. The Charity is indebted to the determination and skill of the Edge Picture Company, Nick Bye and all associated with the making of this film.
Click here for more information about the IVCA and the 2009 winners.
And here is the high quality version that is now on YouTube:
Wednesday, 17 June 2009
Nice to know that after months of planning my local paper bothered to promote the event without a picture, in the side box of a column, and all said, was summed up in 12-14 lines of text.
Perhaps in order to get these people to take anything seriously and find an article regarding sourcing potential life savers newsworthy i must paint myself green, play loud music and drive the Scirocco around the town square..maybe then the story would make at least page 10 !
WHY DO I BOTHER ?
On a more constructive note, can I just say a big thank you to a lady called Sue Harries at West Nott's College who proved to be a much more useful source of potential donor recruitment due to her upbeat and positive attitude that she exhibited when I contacted her ref publicising our event to the students at the college.
Sue = 1 CHAD = 0
Tuesday, 16 June 2009
One thing that I did notice is that the public (And probably the staff!) have a veracious appetite for free pens!, and having replenished the table twice so far with them, i have now run out!, oh well, at least they may have had time to see the info that was on display whilst blagging a Biro !.
I had a quick walk around the clinics this afternoon distributing ANT leaflets onto countless coffee tables and receptions.Sometimes I do wonder if people even bother to look at the stuff that I distribute, and more importantly...do they consider to answer the appeal to become a bone marrow donor ?
Nigel also sent me a DVD disk with a very good 5 min public information film on it called " 2 lives!, i will see about getting it posted onto this blog once I get a few Min's.
So far I have had no offers of help with my latest project (see previous post).But hey, I suppose that these things take time !.
Oh yes...i never did get a reply from the Daily Mirror Newspaper....guess that giving me some space in the paper with a view to saving peoples lives just isn't a good story...oh well :-)
Monday, 15 June 2009
LCD Television or monitor above 22" (must work!, and must have VGA input facility)
2 x 12v to 240v Inverters to power the hardware.Must be rated at over 300w each
1 x laptop.This must be working, but would still be useful even if it has a broken screen as i will be routing it through the television mentioned earlier.
A set of good quality speakers. (Dolby 3.1 or 5.1 prefered...but hey...this is a "zero budget project,so owt will do really!)
Someone with knowledge about forming glass fibre or other resins.I need to make some sort of enclosure in the trailer to house the parts of the set up.TBH wood panels would probably be ok, but we will see :-)
I know that I am asking rather a lot, and anything i can't get donated i will just have to buy myself...but you might as well ask ! :-)
By the way, if anyone would like to call or text me with any enquiries or suggestions for the site, please feel free to do so on this number:
Saturday, 13 June 2009
Please copy and paste the following message......
My names Andy, i am a real person not a spammer, and i have a mission to get more people to sign up to the Anthony Nolan Trust Bone Marrow Donors Register.
Recently I have been receiving far too many crazy,pointless emails that tell me that i can win money,save my family from awful happenings or other wild and wacky promises just by sending the email to my friends and colleagues.The truth is of course that these ridiculous letters are no more use to anyone than a chocolate fireguard!.
So forget all of these pointless, sometimes vindictive and stupid chain letters, and instead, send this message to anyone you think may want to try and save a life.
P.S If you don't send this to others that's fine. You will not die of a nasty disease, your family will not suffer and plague and petulance will not rain down on you because of your decision,it's entirely up to you.
The Internet and email are powerful tools, so lets use them to do some good in the world and take back the power it holds for doing constructive work instead of clogging up in boxes around the world with so much totally useless junk mail!
Please visit this web page for details:
If you don't trust this link, just google it first (Scirocco 2 Morocco) to confirm its status
Friday, 12 June 2009
Shanta is admitted to cabin 43. Her White Blood Count is abnormally low. Since low immunity she's been given very high dose of antibiotics. Yet she's almost always having fever, cough, chest pain.
Her disease was diagnosed in feb 09. Bt she was ok on medicine. Stage II of her disease started about 18 may when she had to be taken to ICU. 2 June her Dr. said her bone marrow needed to be transplanted within 3-4 months.
so i appeal each and every person who is capable and willing to come forward to help this talented and potent young girl in her fight against CML.
This is her appeal which was posted onto YouTube recently:
Can you help Shanta ?
Thursday, 11 June 2009
After arriving we spent 15 mins setting up the test equipment (all medical equipment needs to be tested and inventoried before use), then we had a swift cuppa and got down to work.
We have to accept and check 83 beds before the day of the delivery is upon us, and so i spent a lot of time applying test stickers,inventory numbers and sorting out the paperwork.
Lunch time arrived and we found out that on Thursdays the company send a "runner" down to the chippy to fetch folks orders, so not wanting to be left out we decided to "indulge" in Fish and Chips for lunch...and they were fabulous!.
After lunch we carried on with our work then in the late afternoon we set off back "daan saath" towards John's pad in Worksop.
All in all a very productive, though rather tiring day.
Oh...just like to say many thanks to all at Sidhil for providing us with plenty of coffee and the opportunity to sample that lovely food !
Wednesday, 10 June 2009
My daughter Imogin Appiah is a wonderful intelligent 6 year old. She can be a handful at times but she is my world. One can only imagine my shock when I received the terrifying news that my baby was not well during my lunch break at work.
I had been working as a counter manager for a cosmetic company. That day Imogin was with her grandmother September 18th 2006, a double shock for two people in the space of only a few minutes.
Entering Mayday hospital, I began to tremble uncontrollably but I soldiered on only to have my worst fears confirmed. My beautiful daughter had ALL Acute, Lymphoblastic, Leukaemia). I asked if it was bad news. Yes it is Sheila; however it is treatable, yes most certainly. Those words became my strength and my hope.
From this day Imogin started a two and a half year course of chemotherapy and I was her full time carer. In October 2008 Imogin finished her treatment we celebrated with a trip to Disneyland Paris with the magical taxi tours. Amazingly, 250 children, the London Ambulance Service, the Fire Brigade, the British Police, and the French Police all helped to make it an unforgettable weekend.
The love that I have for my daughter is incredibly deep, she means the world to me I honour her and look upon her with the greatest of respect. She is and always will be a fighter.My day to day routine is based on her survival, she is strong, we are strong and we have reached out for support and received support from fantastic people.
I am writing this account from St. Georges hospital in Tooting, South London.
We came here on Tuesday 17th February because Imogin has unfortunately relapsed and will need a bone marrow transplant in the near future.
But we will continue with our hope, strength and continued determination to find her a match.
Words Written by Shelia Appiah, Imogin’s Mum.
That is the only word I can use to express my feelings about the public turnout for 6 year old Imogin Appiah at yesterdays bone marrow appeal in her name.
My name is Beverley De-Gale; Co-founder of the ACLT Charity. Yesterday's drive was well publicised via the Newspaper Media (local and national), Radio, ITV London Tonight news, Facebook, ACLT Website etc. etc.
Please can anyone explain to me why only 42 people (who were mostly White and Asian) actually took 30 minutes out of their schedules to watch a short presentation, to fill in an application form and to then give a small sample of blood to place themselves on the bone marrow register?
Imogin's school is mostly made up of Black and Asian pupils but the community let her down! We (ACLT) just don't get it! SOMEONE PLEASE EXPLAIN!!"
We wish all the best to Imogin and her family and fingers crossed that the fantastic work being carried out by the ACLT will result in a donor being found for this brave kid :-)
I've Just been thinking about how much the hospital that I work at has changed over the last 13 years since I started working here in 1996.
Tuesday, 9 June 2009
New Video Promo now up for the 2009 gig. Click here
The good news is that the CLL appears to be behaving itself for now, with no major change in my white blood cell counts,no enlargement of my spleen or liver, and my Lymph Nodes are not giving me any bother either. Combined with the results of last years blood tests, it seems that (for now!) it is business as usual....hooraahhh :-)
Monday, 8 June 2009
What is my bright idea? Well it is simple. I am going to install a screen (LCD sort of job) into the trailer, along with a good set of speakers, then hook up a small computer/laptop to the screen, and hey presto i have converted the trailer into a mobile information point for the Ant Nolan Trust :-).
I have come to the conclusion that the best way to get people to join the ANT is to try and dispel all, or at least some of, the many myths and misconceptions that people have as to what becoming a bone marrow donor involves, and by way of showing short video's/testimonials, i hope to break the apparent mis information that seems to be so commonly held by a lot of folk.
Of course the idea seems easy, but the reality is that in order to power such a set up i will need to install some efficient means of energy,probably consisting of a bank of car batteries ,inverter(s), wiring looms and cabling....easy !.
How will I fund this "next great idea" ?....I am still working on that part of the plan, but if anyone has any great idea's...i am all ears :-)
P.S I have written to Captain Cash at the SUN Newspaper to ask for some financial assistance....but so far no reply...we will see :-)
Sunday, 7 June 2009
Started to pick up stuff off of the floor (toys, school bags....ludo pieces!) and put them in the back room when my wife passed me a plate full of baked beans on toast...yum!...but being a man and therefore not good at multitasking, i was unable to coordinate my movements between holding the plate and putting Lego pieces in Andy's Lego box! Result? Have you ever tried to extract a large amount of hot baked beans from a large tub of Lego? It's not fun, it's rather messy, and damn near impossible to account for every bean that went in....going to be a few beans amongst his Lego for some time to come i would say!. Anyway, after a major cleanup campaign I looked up from the tub of Lego and noticed the small green body of my daughters budgie lying rather still in the corner of it's cage.....oh no!. As expected, poor old Odie was indeed dead, having apparently expired during the night, and having fallen off of his perch had laid undetected for most of the morning.
I had the not very nice job of telling Lol the news, and of course she was very upset and emotional about the loss of her pet and friend Odie.
Saturday, 6 June 2009
Have you ever watched kids, On a merry-go-round?
Or listened to the rain,,Slapping on the ground?
Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?
You better slow down. Don't dance so fast.
Time is short. The music won't last.
Do you run through each day On the fly?
When you ask How are you?,Do you hear the reply?
When the day is done Do you lie in your bed
With the next hundred chores, Running through your head?
You'd better slow down. Don't dance so fast.
Time is short. The music won't last.
Ever told your child, We'll do it tomorrow?
And in your haste, Not see his sorrow?
Ever lost touch, Let a good friendship die
Cause you never had time To call and say,'Hi'
You'd better slow down. Don't dance so fast.
Time is short. The music won't last.
When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry through your day,
It is like an unopened gift....Thrown away.
Life is not a race.
Do take it slower
Hear the music
Before the song is over.
Funny thing is that i can relate to such a situation, having joined the RAF in 1983 I almost immediately found myself meeting and greeting a whole new group of people who i was then destined to spend the next 6 weeks with during basic training at RAF Swinderby. Of course there were no camera's to record the fall outs,fights and disagreements that myself and my other "housemates" got involved in, but believe me, the tasks we were set by our Big Brother's (Sgt Humpage and Cpl Jenner) were a lot worse than those asked of the folk on the TV show....especially cleaning the bogs with a toothbrush and painting the grout between the tiles on the floor. Saying that it would have not made what would be classed as good TV viewing ! :-)
Friday, 5 June 2009
I have spoken to a lady named Ruth at RAF Cranwell and she has agreed to spread the word amongst the staff at the base to see if we can get the RAF involved in our event. I have fixed a temporary poster (The Nooky Nauyokas one) to the rear screen of the Scirocco until Lee manages to get the graphics sorted out (hope the house move is going well mate ! :-). Ann,Joel mum, has been getting the word out via our friend at BBC Radio Nottingham today (could not listen to it live as it was during the school run..and the radio was playing silly buggers !).
Rob Sissons from BBC East Midlands today News has promised to get over to the donor session at Newark on the 23rd to do some coverage of that event, and mention the Mansfield Event that will be taking place 2 days later, so that will work out well in letting more people know about it :-).
I am off of work today (don't do Friday's..lucky me!), and so after getting the kids to school, the wife off to her weekly shop with her mum (hello Jan!) i am just sitting down to write this post after popping a bit of washing in the drier and picking up a ton of toys off of the floor..thanks Andy !.
If time allows i will give the Scirocco and trailer a wash (how i hate those bl**dy birds!), then at 2:30 the school pick up will begin and the house will suddenly become a little noisier ! :-).
Thursday, 4 June 2009
Someone I told at work today was horrified that I had come to this decision. "People have died in the past for you to have the right to vote"they said.I thought for some time and then told them "No,people died so that I could also have the right to decide NOT to vote", and for that reason, my conscience is clear
Wednesday, 3 June 2009
Northwich schoolboy climbs Snowdon months after Leukaemia treatment ends
A 10-year-old from Kingsmead who completed his treatment for Leukaemia in September has climbed Snowdon to raise money for research into the disease.
Jamie Pritchard, of Coronet Avenue, took on the challenge on Friday with his dad Ian, grandad Les aged 71 and little sister Emma, seven.
The family were joined by 20 other friends and family who also wanted raise money for Leukaemia Research.
Jamie was diagnosed with Leukaemia at the age of six in April, 2005, and underwent years of gruelling treatment. On completing his treatment in September 2008 Jamie decided he wanted to begin fundraising
He hopes to raise £3,500 in all – £1 for every foot of Snowdon’s height.
Les said: “In brilliant sunshine everyone reached the summit and had glorious panoramic views at the top. Jamie’s friends formed a guard of honour as Jamie reached the top.”
Jamie told the Chronicle that while he enjoyed the trip, he knows all too well the importance of what he is doing.
He said: “Some of the children don’t make it, and do not get through it like me. I just want to help stop this and raise money for the research.”
Jamie’s mum, Jo, said it was deeply distressing when Jamie was diagnosed.
She said: “We were just in a state of shock when he was diagnosed, we were terrified.
“We spent an awful lot of time at hospital. We knew children who had the disease who did not make it through the treatment.
“We also saw other parents who were going through the same thing. It was horrendous.”
You can still sponsor Jamie by going to www.justgiving.com/jamieswalkers2009 or email him on email@example.com.
All money raised will go to Leukaemia Research.
"Everyone at The Anthony Nolan Trust is incredibly saddened to hear that Charlie has died and our thoughts are with his family," he said.
"At the trust the urgent need for more bone marrow donors continues.
"We need to save more lives and we will forever be indebted to Charlie and his family for their powerful part in this struggle.
"It is difficult to understand what Charlie and his family went through to make his appeal public."
"All I can do is thank him for the legacy he has left."
"His appeal inspired people to join the bone marrow register and to donate funds to the charity. The work of Charlie and his family brought fresh hope to other leukaemia sufferers."
His parents Pamela, 35 and John, 43, spent months waiting by the phone in the hope that a bone marrow match,which was his only hope of survival, would be found in time.
He already suffered from bone marrow dysplasia when doctors told the Pearson's in September that he had juvenile acute myeloyd leukaemia.
Two visits a day to the Sick Kids hospital became necessary for him, and the parents,along with younger brother Louis,always knew a transplant wouldn't necessarily work given the severity of his condition.
Mr Johnston added: "What he has done is to raise awareness of the fact that there is a way for people to give a precious gift of life and be a bone marrow donor.
"Many now realise how comparatively easy it is to help patients with leukaemia".
"Unfortunately, his struggle is lost, but through him the battle will be won for others."
Charlie's family were too upset to speak when approached by the Evening News.
YOU HAVE IT IN YOUR BONES TO SAVE A LIFE
PEOPLE can help save lives by joining the Anthony Nolan Trust register of bone marrow donors.
Around 70 per cent of leukaemia sufferers need a donation of bone marrow from an unrelated donor. Every year the trust receives more than 16,000 patient search requests from transplant centres around the world.
Anyone aged 18 to 40 and in good health can apply to join the register. The charity regularly holds donor recruitment clinics all around the country. For more information call 020 7284 1234 or visit www.anthonynolan.org.uk.
Rest in Peace Charlie.We will keep on fighting in your memory.
Tuesday, 2 June 2009
I must admit that i was a little crafty with the last one, instead of heading it's title as "Anthony Nolan Appeal" blah,blah...i put "Susan Boyle.Information you may find interesting".....well that "hook" appears to have not worked either so i suppose that the only course of action now is to pick up the phone an call them!.I will let you know what they say :-)