Super Donation Day Sat 10th July 2010

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‘Super Donation Day’

‘Spit & Commit’ Be the ONE to make a difference today!
 
ACLT charity with the support of Desi Donors calls out to the West Midlands Community to Make a difference now and register to support 10 year old Amun Ali with the New Quick & Easy Saliva Test!
 
Leading leukemia charity the ACLT, along with the support of Desi Donors are to host a ‘Super Donation Day’ event at the Galaxy FM Studios, 1 The Square, 111 Broad Street, Birmingham B15 1AS on Saturday 10th July 2010. Time: 12pm till 5pm.
SUPER HEROES WANTED!
Bone Marrow | Blood | Organ
We reveal exciting news about the ACLT ‘SUPER DONATION DAY’ at Galaxy FM. As its World Cup season, we ask Asian, Black and Mixed Race people to ‘Represent your Nation through Donation’. We’ve made registering even easier with a quick & easy one-stop registration event including the New Simple, Quick & Easy Saliva Test. The ACLT has joined forces with other donation partners to encourage all types of donation amongst the UK’s ethnically diverse communities. Be the ONE to register and be a lifesaver.
For many people suffering with various diseases a bone marrow, blood and/or organ donation may offer the only chance of survival. Sadly, there is a world wide shortage of donors from the Black, Mixed Raced and Asian communities. The chances of finding an unrelated bone marrow donor are drastically low in these comunities – about one in 100,000 or worse!
The wide genetic diversity of these communities make it much harder to find suitable matches and as so few people from these backgrounds step forward as donors it makes the task very hard. Alas, the challenge is the same for organ donation. There are over 17.1 million people on the NHS Organ Donor Register but only 1.5 per cent of these are from the Asian communities and a woeful 0.4 per cent are from the Black communities.
There is a huge disparity between the number of Black and Asian people in need of transplants and the number of people from those communities who are willing to act as donors. What lies behind the reluctance of Black and Asian people in Britain to act as bone marrow, blood and organ donors? Stastistically, they are far less likely to come forward as donors than their white compatriots. The often repeated suggestion is that there is a greater fear and suspicion of the medical procedures by these groups, but lack of awareness is high.  
The problem is severe, organ donation figures show that Black and Asian people comprise a quarter of the people on the kidney transplants waiting list, far in excess of the percentage of the population.
This registration drive is being held in support of 10 year old Amun Ali.  Amun, from Small Heath, is just ten years of age and has a rare condition known as severe immune deficiency - an illness which has already claimed the life of his four-year-old brother.
A bone marrow transplant is his only hope of recovery but Amun's not only fighting a debilitating condition but also battling against the odds of finding a suitable donor.
Statistically, there's about 1 in 3 chance of a white British person finding a match, compared to a 1 in 100,000 or worse chance for finding a match of Asian or Black origin.
Since 1996 the African Caribbean Leukaemia Trust (ACLT) has been working with a wide range of health and social organisations to help save the lives of thousands by recruiting more ethnic minority donors. This is a prestigious alliance between the ACLT, NHS Blood & Transplant (NHSBT) and Anthony Nolan Trust. 
UK organisation Desi Donors, who focus on engaging Asian communities to learn more about becoming a donor, have previously held a number of recruitment [SW1] clinics for Amun Ali. Beverley De-Gale, ACLT cofounder said “Saliva tests will help dispel the fear of needles and reluctance, radically speed up bone marrow registration and renew the public’s enthusiasm to help save lives.”
Sadly, too many BME patients are not finding suitable matching donors and this is the reality echoed by many BME sufferers around the country, and yet the solution to overcoming these incredible odds is surprisingly simple; more Black, Mixed Raced & Asians (BME’s) are needed to sign up as donors.
To tackle the persistent shortage of donors, the ACLT has set a new target to double the yearly recruitment, and aims to recruit approx. 2,000 new Asian, Black and ethnic minority bone marrow donors, boost blood and organ donation through a new campaign launched in Feb 2010. This hard hitting campaign aims to build on the ACLT’s existing ‘Heroes Wanted’ Campaign to inspire more people to take action today. The urgent need for new donors will increase the chance of finding matches for hundreds of patients awaiting a transplant.
Therefore the most powerful message for this appeal is that it’s never too late to be someone’s hero. An individual has the potential to personally save a life. Support Desi Donors by attending the ACLT ‘Super Donation Day’ [SW2] registration drive you could potentially save the life of courageous Amun, or one of the many hundreds of other patients who require bone marrow transplants, blood and/or organ donations. So if you are Asian, African, African Caribbean, Mixed Race or from another ethnic minority origin please find the time and register. It could be the most important and rewarding thing you ever do in your life by stepping forward and taking just 30 minutes out of your day to attend this registration drive on Galaxy FM Studios, 1 The Square, 111 Broad Street, Birmingham B15 1AS on Saturday 10th July 2010. Time: 12pm till 5pm.
‘Super Donation Day’ Save a life, Be a Hero!
You can Be the ONE to give ‘The Gift of Life’
– Ends –
Note to editors:
 
For media information or to arrange an interview, please contact the ACLT office on 020 8240 4480:
 
1.      The ACLT is a voluntary charity, whose main aim is to increase the number of ethnic minorities on the UK bone marrow registers, blood donation register and NHS Organ Donor Register.
2.      Since our establishment 14 years ago, the ACLT have increased the number of Black and Mixed Raced potential donors on the UK bone marrow lists (Anthony Nolan Register and British Bone Marrow Registry) from approx. 580 to approx. 32, 000.
3.      The ACLT was awarded a Daily Mirror Pride of Britain Special Award in 2006
4.      Amun Ali’s father is available for interviews
5.      ACLT founders Orin Lewis and Beverley De-Gale & Reena Combo from Desi Donors are available for interviews
6.      Desi Donors is a UK based organisation dedicated to Bone Marrow, Blood and Organ Donors within the Asian and Mixed race communities.
7.      Desi Donors, officially launched in July 2009, successfully campaigns for more Asian & ethnic donors.
8.      Please print this very IMPORTANT information: Potential bone marrow donors must be aged between 18-49 years old and in good health when registering (staying on the register until your 60th birthday). Anyone aged between 17-65, weighing more than 50 kg (7 stone 12lbs) and in general good health could potentially start saving lives by becoming a blood donor. There is no upper age limit for blood donors who have donated in the last two years.Everyone irrespective of age or health and who is considered legally competent can join the NHS Organ Donor Register. Joining the Register expresses a wish to help others by donating organs for use in transplantation after death but importantly, joining the Register also is a way to give legal consent or authorisation for donation to take place. When you register it is important that you tell those closest to you about your decision.
9.      For more information please contact the ACLT on www.aclt.org or the Anthony Nolan Trust on www.anthonynolan.org.uk or the National Blood Service www.blood.co.uk or the NHS Organ Donor Register www.organdonation.nhs.uk
10. Each year, thousands of patients need bone marrow transplants to treat leukaemia and other disorders of the immune system. If patients cannot find a compatible donor amongst their family an unrelated donor is needed. The ACLT works to recruit more Black & ethnic minority bone marrow donors.
11. There are currently not enough volunteers on The Anthony Nolan Trust’s and/or NHSBT’s (British Bone Marrow Register) register from UK minority ethnic groups. More donors are needed from African, African-Caribbean, Mixed Race, Asian, Chinese, Eastern European, Mediterranean backgrounds to help increase the diversity of tissue types on bone marrow registries?
12.   Ethnic origin is important when matching donors and patients. The ‘markers’ that are tested when matching for a suitable donor are genetically inherited and often unique to a particular race. A patient in need of a transplant is more likely to discover a suitable donor amongst groups of people who share a similar genetic history to them. In practice, this means that an African-Caribbean patient, for example, has the greatest opportunity of finding a donor within his or her own ethnic community.      As there are currently not enough ethnic minority donors registered the pool of people which may be realistically searched for some patients is dramatically reduced.
13. Neil Greenslade, Programme Controller of Galaxy FM in Birmingham says “Galaxy is delighted to be able to host and support the ‘Super Donation Day’.  By coming down and taking 30 minutes out of your day could potentially save a life – and that life could be of someone you know”
14. Lynda Hamlyn, Chief Executive of NHS Blood & Transplant, says "NHSBT are delighted to work with the ACLT on ‘Super Donation Day’.  We hope the event achieves great success in recruiting more people from BME communities to help save lives."

Cancer survivor Indo-Canadian actress Lisa Ray supports UK based organisation Desi Donors

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Press Release

May 2010

 

Cancer survivor Indo-Canadian actress Lisa Ray supports UK based organisation Desi Donors as she realises how difficult finding a successful Bone Marrow and Stem Cell match is herself.

 

The model-turned-actress decided to undergo medical examination earlier this year after she felt 'exhausted, pale and drained' all the time. It was only after a thorough examination that Lisa was diagnosed with multiple myeloma on June 23rd 2009.

 

Multiple myeloma is a type of bone marrow cancer arising from plasma cells, which are normally found in the bone marrow. Plasma cells form part of your immune system, which is why Lisa was feeling so weak all the time. Although a large amount of research has been done to investigate the potential causes of myeloma, nothing has been proven to date.

 

Explaining her disease, Lisa Ray said, 'Myeloma is incurable. It's a relatively rare cancer of the bone marrow. Every year, approximately 2,100 more cases are diagnosed. I'm a junior member in many ways, having been diagnosed at 37, while the average age is 65.”

 

Desi Donors heard of Lisa’s illness and contacted her to ask for her support with their organisation. Lisa Ray agreed as she felt, “this was an issue very close to her heart.”

 

The stunning model-turned-actress, who starred in the film ‘Bollywood/Holllywood’, is staying hopeful that her cancer can be cured with new treatments available in the healthcare sector these days.

 

“So today with Velcade and, Revlimid and other promising new treatments in the pipeline, our survival rates are improving. But only with an ever-expanding toolbox of treatments and awareness can this cancer be beat. So I'm going to do everything I can to wrench the spotlight onto myeloma and cancer awareness. I believe it can be cured. That's the dirty realist in me,” Lisa positively added.

 

Lisa Ray was born to a Bengali father and a Polish mother. She joined showbiz as a model and later ventured into films with Tamil movie 'Nethaji'. After that she was seen in Vikram Bhatt's 'Kasoor' in 2001, but opted to work mainly in English language films tackling challenging and non-traditional roles.

 

In 2002, internationally renowned filmmaker Deepa Mehta cast her opposite Rahul Khanna in the crossover film 'Bollywood Hollywood'. The Canada-based director later repeated Lisa in her Oscar-nominated period drama 'Water' (2006), in which she impressed critics with her performance as a young widow.

 

Lisa has kept her feet firmly on the ground throughout her stardom and it is her humble nature that has given her the strength not to break down and let her illness beat her, but for her to beat her illness by being positive and remaining strong.

 

Desi Donors are privileged to have Lisa Ray’s support and hope that people who have seen her in films or modelling in the past will see that anyone can go through such an illness. Desi Donors hope to support Lisa through this stressful time.

 

“Having Lisa Ray as one of the official ambassadors of Desi Donors is an absolute privilege. She has her own illness to deal with yet is lending her time and support to helping our cause as she wants to help others and let them know what she is going through. We really do hope Lisa gets better and we’ll continue to support her during this sensitive time,” Desi Donors said.

 

Lisa has currently returned back to Canada after a prolonged visit to India and is successfully over coming her cancer. Yet her battle continues to try and make other people, particularly Asians aware of the type of Bone Marrow cancer and the severity of it.

Asian Radio Station backs Amun’s appeal - Recruitment clinic @ Asian Star Sunday 7th March 2010

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Press Release

 February 2010
 
Asian Radio Station backs Amun’s appeal
 
Desi Donors have been appealing to find Amun Ali a suitable bone marrow match for many months now and have already held two successful clinics alongside the Anthony Nolan Trust in Birmingham.
Now Desi Donors are getting set for their next Patient Appeal for Amun Ali and have teamed up with popular Asian radio station, Asian Star Radio.
 
Asian Star Radio based in Slough have voluntarily offered their venue & facilities to Desi Donors to hold a recruitment clinic to help find Amun a suitable match and get more Asians on the Anthony Nolan Trust register.
 
Desi Donors have already recruited over 125 new Asian recruits onto the register through their previous Patient Appeals in Birmingham for Amun Ali.
 
Ten-year-old Amun Ali, who lives in Small Heath, Birmingham, has a rare condition known as Severe Immune Deficiency. It is a condition that makes Amun very weak. For example: If Amun were to get a minor infection it would be extremely life threatening. Over the years Amun has been in (H.D.U) High Dependency Unit on many occasions, where minor infections such as chickenpox have got worse and put him in quite a bad state of health.
 
Healthy people aged 18 – 40 from the Asian community are urged to come to the clinic at Asian Star Radio in Slough to join the registers or to just simply find out more about what Desi Donors are trying to do.
 
There is a 1 in 3 chance of a White person finding a match, but shockingly there is only a 1 in 125,000 chance of an Asian person finding the right match. A successful match, when a bone marrow donors tissue type matches that of a patient, could mean the difference between life and death. Most matches are found from within the same ethnic community as the patient; the Asian community is seriously under-represented on the bone marrow register, and more donors are urgently needed.
 
The Anthony Nolan Trust takes back lives from leukaemia by managing and recruiting new donors to the UK’s most successful bone marrow register. There are just over 400,000 people on the bone marrow register and it’s not enough! Just 4% of those 400,000 are Asian. There are 16,000 people worldwide and 1,400 people in the UK in need of a bone marrow transplant. People who have gone on to donate talk about how wonderful it feels to have saved someone’s life. The physical feeling afterwards has been compared to a hard session of exercise.
 
The Recruitment Clinic to appeal for a suitable Bone Marrow match for Amun will take place on Sunday 7th March 2010 from 2pm till 5pm, at Asian Star Radio, The Gallery Level, The Observatory Shopping Centre, High Street, Slough, SL1 1LH.
 
Notes to Editors:
 
Desi Donors is an organisation dedicated to Bone Marrow and Blood Donations within the Asian community.
  • -          Desi Donors officially launched in July 2009, and has been successfully campaigning for more    donors since.
  • -          Amun Ali lives in the Birmingham, West Midlands and is 10-years-old.
  • -          Amun suffers from Severe Immune Deficiency.
  • -          All donors are welcome, but young males and people from ethnic minorities are under-represented on the register.
  • -         Asian Star Radio is a community radio for the Asian people in Slough.
  • -         Asian Star Radio is available on 101.6fm in the Slough area of London including Windsor, Maidenhead & Heathrow.

    •  

Asians Urgently Needed to Save Lives

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Press Release

October 2009
Asians Urgently Needed to Save Lives
UK based charity Desi Donors are urgently calling for members of the Asian community to come forward and save the lives of Asian patients who are desperately waiting to find a suitable bone marrow donor. One patient who needs to find a donor urgently is 10 year old Amun Ali who lives in the Small Heath area of Birmingham.
Desi Donors which launched earlier this year is proactively helping people like Amun Ali find the right match so they can help them live, however there are not enough Asians on the register so matches are not being found.
Amun Ali has a rare condition known as Severe Immune Deficiency. It is a condition that makes Amun very weak, for example: If Amun were to get a minor infection it could be extremely life threatening. Over the years Amun has been in (H.D.U) High Dependency Unit on many occasions, where minor infections such as chickenpox have got worse and put him in quite a bad state of health.
A special clinic will be held in Birmingham on Sunday 25th October 2009. The clinic will be an opportunity for Asians in the West Midlands to come and join the bone marrow register. The more Asians joining the register will mean the more chance of saving the lives of people like Amun. Sadly Amun has already lost a 4-year-old brother to the same condition because a suitable match could not be found.
“I am appealing for a donor to come forward, as I have already lost a 4 year old son to this condition. Amun takes powerful steroids, medication and has an infusion every week, where a nurse comes to my house. The doctors have told me that even with this medication, there is still a chance Amun could get an infection and not make it. Having a match for the bone marrow would mean Amun would have a normal life without any medication. Me and my wife and children would also have a normal family life. To find someone with the right bone marrow for Amun would answer my family's prayers. Amun is a happy and bubbly little boy with a ready smile for everyone,” said Amun’s Father Ashgar.
Healthy people aged 18 – 40 from the Asian community are urged to come to the clinic to find out more. The clinic is being held from 2pm – 5pm at the ASRA Health and Social Care Centre, Fenton Street, Smethwick, West Midlands, B66 1HR.
The blood sample taken at the registration clinic is tested to establish the tissue type and the results will be stored on The Anthony Nolan Trust’s confidential database. As a new member of the register the donor receives a registration card and written confirmation of being a potential life saver. A donor may be found to be a match for a patient almost immediately or may wait many years before being asked to donate – and in some cases may never be asked to donate at all, if no corresponding matches are requested.
There is a 1 in 3 chance of a White person finding a match, but shockingly there is only a 1 in 125,000 chance of an Asian person finding the right match. A successful match, when a bone marrow donor’s tissue type matches that of a patient, could mean the difference between life and death. Most matches are found from within the same ethnic community as the patient; the Asian community is seriously under-represented on the bone marrow register, and more donors are urgently needed.
 “There are many young children in the UK with a major problem: they have blood disorders and without a bone marrow donor their chances of survival are slim. We urgently need members of the Asian community to join the bone marrow register and help save the lives of these children and others,” Desi Donors.
Notes to Editors:
-          Desi Donors is a charity dedicated to Bone Marrow and Blood Donations within the Asian community.
-          The Anthony Nolan Trust takes back lives from leukaemia by managing and recruiting new donors to the UK’s most successful bone marrow register.
-          Desi Donors officially launched in July 2009, and has been successfully campaigning for more donors since.
-          Amun lives in the Birmingham, West Midlands and is 10-years-old.
-          Amun suffers from Severe Immune Deficiency
-          Just 4%  on the register are Asian.
-          There are 16,000 people worldwide and 1,400 people in the UK in need of a bone marrow transplant.
-          People who have gone on to donate talk about how wonderful it feels to have saved someone’s life.
-          The physical feeling afterwards has been compared to a hard session of exercise.
-          All donors are welcome, but young males and people from ethnic minorities are under-represented on the register.

British Asian Music Icons are Official Desi Donors

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Press Release: 26th July 2009

British Asian music artists Rishi Rich & Veronica attended the first Desi Donors Bone Marrow and Blood Donor Recruitment Clinic on Sunday 26th July in Harrow, Middlesex, to join the Anthony Nolan Trust Register & National Blood Service Register.

Both the international music artists made history today by becoming Desi Donor’s first two official recruits by joining the Bone Marrow and Blood donor registers.

Rishi Rich who has worked with the likes of Britney Spears, Jay Sean & Craig David said he felt proud to be a Desi Donor:
“I really wanted to come and join today. I’m really proud to officially be on the register now as I know one day I could save someone’s life. People see us as just artists, but there’s more to us than that, we too have feelings & emotions and I really hope one day I can help save a life. There is such a lack of Asians on the register. It’s important people take influence of our involvement in Desi Donors and join the register themselves.”

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British Asian Celebrities gather in the Midlands for the launch of Charity

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PRESS RELEASE: 11th July 2009

Personalities from the world of British Asian music, television and media converged on the West Midlands for the special charity ball by Desi Donors, in the hope of raising awareness and funds for Bone Marrow & Blood Donation charities.

The launch of Desi Donors, took place on Friday 10th July 2009 to help raise awareness for the Anthony Nolan Trust and was attended by showbiz favourites including Taz (Stereo Nation), Shin (DCS), Channi & Mona Singh, Gurcharan Mall (Dhol Blasters), Des-C, B21, BBC’s Sonia Deol, Majid from The Apprentice and other special guests.

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