Being diagnosed with a blood disease comes as an utter shock to patients and their families. Then there’s the double whammy when the patient is told that their last, and ONLY, chance to live depends upon the willingness of an absolute stranger, who by some chance turns up as a DNA match, to donate their bone marrow. Knowing a friend whose husband was dealt a similar blow and seeing how little awareness there was among the public made me set aside my early corporate ambitions and join the BMDP back in 2015.
I didn’t know what to expect but GAME ON!
In a world where the success of business development is measured by the bottom line and productivity, mine is measured by my effectiveness at raising awareness and the number of potential life savers, aka bone marrow donors, I manage to recruit. It has been a journey filled with sweat, joyous tears and a ton of saliva-soaked swabs and 2017 had been no different.
On the Offence
2017 began with two patient appeals requesting more donors to join the public register. One was for a young boy in his teens and the other a father with young children. There was no time to waste, this resulted in two donor recruitment drives one within the government sector and the other at a large international bank spearheaded by family and colleagues of the patient. It was heartening to see the BMDP, colleagues, patients and friends stand united in this fight against blood disease. Would we be successful in finding them a match? Only time would tell. But it was undeniable that the new donors added from these drives would one day go on to give hope to another patient. Somewhere in the world and sometime in the future.
We pushed hard! In just 4 months we had twenty-one donor recruitment sessions, started conversations with SINDA and AIN society that had amazing programmes with our Indian and Malay communities and we were adopted by a soccer team – CBD Wanderers who now wear bright orange jerseys with our BMDP logos. Plans were set to full speed ahead and donor recruitment within the corporate sector was at an all-time high.
June came and proved to be a major game changer. The first of a series of articles putting BMDP in a questionable light hit the press and once companies caught wind of the news, recruitment juddered to an immediate halt. The pushback from companies was understandable but it was frustrating to have no platform by which we could explain the misunderstanding and perhaps change their perception. My personal target to exceed the enormous success from 2016 when we had a whopping 80 recruitment drives seemed impossible.
We needed something to change the game!
The Game Changer
Help came from our Patron, Minister K Shanmugam, who opened the doors into the Ministry of Home Affairs. By July, the partnership was in full swing with various divisions within the Ministry listening yto our message and at least giving us a chance. Among these divisions were the SCDF and Police Academies who gave us monthly – sometimes bi-monthly dates – to reach out to a room packed with their new recruits. These unchartered waters posed a new and exciting challenge – how do we shift our message from attracting business professionals to educate and reach out to young men from diverse backgrounds and education levels, to commit to save a life?
Each presentation was a learning journey in helping us understand the young recruits better and deliver our life saving message more effectively. The amazing result from these minor changes was reaching a tipping point in donor recruitment with the last three sessions for the year consistently delivered a 70% sign-up rate. This was huge and a stark contrast to the companies when even getting people way from their desks was a challenge. Another huge win from this partnership was in the number of Malay donors which directly contributed to BMDP’s secondary mission of increasing minority representation on the register. Indeed, when one door closed another opened, and we just needed the agility to respond, adapt and to do it fast!
Bad press did not stop us from revisiting the corporate world. In September, instead of targeting individual companies, a two-week programme was rolled out to multi-tenant buildings and office campuses in support of World Marrow Donor Day. Ocean Financial Centre, Asia Square, Changi Business Park Tower 2, Marina Bay Financial Centre and Media Corp campus, all with many and diverse tenants, came on board contributing over 200 new donors to the programme. Getting in front of this corporate crowd was a win and from these sessions, we started conversations with new companies and even got some community leads.
2017 was an ever-changing game and my greatest takeaway for the year is best encapsulated by a quote from American football coach Paul Bryant – Don’t give up at half time. Concentrate on winning the second half.
This year was all about pushing through, being agile and most of all listening and learning from our audiences to fine-tune the message. So what seemed bleak in the middle of the year came out to have an extraordinary and unexpected outcome – my highest donor recruitment yet and sales leads into a host of companies that are still to close.
~Amanda Sarah Mathew~
Today we say goodbye to our CEO, Jane Prior after five years of her leadership. It’s a mixed day for those of us in the organisation and as Editor of the newsletter, I wanted to catch a few moments with her to find out what were some of her personal highlights in this journey.
Q: It has been five years since you joined the BMDP so what is the main highlight for you during that period?
JP – Most definitely the things that stand out are the people and relationships that I have forged along the way. Our message and asking the general public to step forward and become a bone marrow donor is not an easy one – we are pushing against years of pre-conceived ideas and misconceptions and for most people it’s difficult to grasp the need when the patient doesn’t even have a face or identity.
It has been an amazing five years with more that 45,000 new donors signing up to the register and we have developed a professional services offering to the transplant hospitals that saves the patients both time and money. None of this would have been possible except for the rest of the BMDP team. I am honoured to have smart, passionate and committed people working beside me and they should all be very proud of their achievements knowing that they played a part in saving so many lives and how many people can say this.
I cannot talk about highlights and not mention World Marrow Donor Day. Crazy Idea but we wanted to get 50 volunteers to stand absolutely still as “living statues” in Orchard Road painted silver or gold. Our message was that ”the world stands still and life stops when anyone is diagnosed with a blood disease”. We were overwhelmed by the response which brought a wide range of people out to join us – from bankers to IT workers, families and even some of our patients. All painted from head to toe in silver, gold or orangeand they did bring Orchard Road to a stop for a few precious hours with many people coming to sign up as donors at the same time. Hats off to the team who had to put up with their crazy CEO who said ”we can do this” – and then they all surprised themselves when we did it!
Then we have Ah Siao! A crazy man indeed who pledged to do the impossible and pull a tyre the whole length of the marathon to demonstrate that people can overcome hardship and achieve the impossible, if they only make an effort and commit to try. Ah Siao started a movement and runners nationwide all got to hear about the BMDP – again making a huge impact but most importantly, he demonstrated that being a donor is just about making the commitment.
Q: what else do you see as a measure of success?
JP – When I started five years ago, we had very few partners who were willing to commit to us and help on a long-term basis. Today we have more than 30 Junior Colleges and Tertiary Institutions who work with us regularly, making the BMDP a part of their curriculum. Through the Patronage of Minister K. Shanmugam, we partner with the Home Team and Civil Defence Force so now all young NS-men get to hear our story and many of them make the commitment to sign up.
I feel this success comes not only from the work of the team, but also the strength of our message which asks an individual to make a commitment to help another human being. I like to say that we are re-igniting the “Kampong Spirit” in the community and that is a very compelling argument as to why any organisation or individual should support our cause.
Q: The years have not all been smooth sailing – what were some of the main challenges that you faced?
JP – Like any organisation going through a period of fast growth, this in itself brings a number of challenges. How to keep everyone aligned to the mission and vision which can somehow become lost in the urgency of the work and in our case, it was a challenge to keep abreast of the huge amount of back-office support activities that are needed.
Q: To inspire a team every day is a hard task so how were you able to keep your own passion alive on a routine basis?
JP – Oh that one is easy! As many people will know, our family benefitted from the generosity of a stranger who donated bone marrow for our eldest son more than 20 years ago. In doing so, she not only saved a little boy from inevitable death, but she also kept our family intact.
On those days when I have been frustrated or disappointed by bad news such as people and organisations refusing to help us, I am re-energised by the fact that child has now grown to become my best friend and the very fact he is able to get on with his own life, is a source of inspiration.
There are other patients who inspire us when they reach beyond the stark reality of their own situation to see how they can help us through sharing their story and being an inspiration to others. I know I speak for the whole team that it is a privilege to be invited into their lives at a most difficult time and to explore how their own situation can be a beacon of hope for other patients sometime in the future.
Q: Any final thoughts or message that you would like to share
JP – Life isn’t meant to be easy and it is the challenges, and how we respond to them, that shapes each of us as individuals. Do we come away from a difficult period saying “enough, and I will never do that again”, or is it an opportunity to seize with both hands and bring that learning to future life-experiences.
I would like to believe that all the staff working within the BMDP bring a resilience that will help them overcome any knock-back or hurdles they encounter in their future careers. At the same time, our culture is one of trying out new ideas, giving them a test drive and if we get the results we want, fantastic, if not, then let’s try again until we do succeed. This in itself is unusual when so many people want a rule book by which to operate and within the BMDP, we push people out of the comfort zone, and most often they surprise themselves with the opportunity this brings and the success they see.
The wins across the education, government and community sectors were won through hard work, persistence and drive and that’s perhaps the signature to the BMDP’s recent successes – and a trademark of our amazing team.
Followers of BMDP’s work should be familiar with our Ambassador, Mr Gerard Lin, or better known as Ah Siao. The last we heard of him was when he trekked 1,000km in 20 days to raise awareness for BMDP and then featured on the TV series “Weekend Warriors”.
We are all curious about what he is doing these days and it’s good to know that he is not off the radar, and in fact we want to share a remarkable story of a recent Ah Siao encounter…
Ah Siao standing with the Ah Siao portrait in BMDP’s multi-purpose room
If you are reading this. I want to say thank you. You made my day by saying hi to me.
The chances of us meeting is nearly zero. I was not in my running gear but instead concentrating on my work hunched over a laptop with bleary eyes having stared at the screen for 18 hours. No one ever recognises me despite for all that heroic running for the BMDP and sometimes it feels I am reduced to a pathetic heap of dreariness.
Then, you suddenly came into my view; radiant and shining light over my world. “Excuse me, but are you Ah Siao? I am a bone marrow transplant patient and I want to thank you for what you do.”
A transplant patient? This made it even more remarkable. The chances of a patient getting a transplant is 1 in 20,000 and then they need to fight through to survival. The odds are mind boggling and what’s the off chance that we encounter one another……
“I am here for my checkup…” Suddenly everything seems minuscule. My work, my worries my troubles.
You regaled about how much courage you took to come say hi. You checked my Facebook pictures to make sure it was really me even zooming in on my specs. I can certainly relate to that. Gerrard is an Introvert once out of my Ah Siao armor of running gear so I want you to know that you really made my day.
We might never meet again but the warmth that filled my heart at this brief encounter, will be remembered for some time to come. So journey on – I hope the work that Ah Siao did will add to the courage that you already have and be a SURVIVOR.
Today I just got news that a loved one who raised me like a son has cancer and might be terminal last stage. Fingers crossed, still awaiting test results. Dreadful news hovering in my thoughts for the past week so thank you for making my day.
Thank you, X! You never know when you might make someone happier. Even with a simple hi. Please continue shining and be lovely.
For 24 years, the BMDP has been recruiting volunteer bone marrow donors in support of our mission – to save lives! With 85,000 donors on the register we have come a long way, but we still have much further to go to give every patient that one last chance of life.
Please think about the BMDP this Christmas and make a donation to support our life-saving work. It costs $180.00 in staffing, equipment and laboratory tests to add each new donor onto the register which means we need almost $3 million a year to just give all Singapore’s children a better chance.
Fully tax-deductible, your Christmas gift will bring hope and a brighter future for patients still waiting to find their match.
Every patient deserves a second chance in life. Donate and help us save more lives!
“Even the wisest mind has something yet to learn.” – George Santayana
In BMDP, continuous learning as well as regular training and sharing sessions are some of the ways to upkeep professionalism within the organisation, including all of the staff working for us indirectly through our fundraising partner – APPCO.
Last month we launched an online training module for the fundraising team to keep them abreast of the latest information in our life-saving work and to make sure everyone fully understands the BMDP’s fundraising policies. As our ambassadors who are meeting the public every single day, it is vital that every fundraiser fully understands our work, the illnesses we treat and how we use the funds that are generously donated by the public.
BMDP CEO, Jane Prior leads a sharing and training session for the APPCO team
To give a pre-view of what they can expect from the online training module, quiz-time at the end of the session tested participants on their general knowledge about the work of BMDP. Throughout the fun, laughter and serious learning, it was a great opportunity to reinforce some of the key messages and to clarify exactly how our work is vital to the Singapore community.
All in Kahoots at quiz time with Amanda & Cedric from the Donor Recruitment team
No surprises that the veterans among the team got the top marks, with one exception, proving to the younger, more inexperienced, team members that they know their stuff! Despite that, the learning journey does not end here as they will all be undertaking the various online training alongside the BMDP staff and our Executive Committee. Way to go – lifelong learning!
Top scorers for the quiz-time with the quiz master and mistress, from left to right:
Cedric, ~3.5 years | Grace, ~1.5 years | Jayden, ~4 years | Bing Long, ~4 years | Chong Lee, <1 year
We call our volunteer donors “heroes” as they have all done something extraordinary to save a life. In stark contrast to our definition of heroes, we meet many people with amazing and almost superhero powers which they bring out simply to avoid us… whatever it takes to not hear our message at any cost!
In a light-hearted look at the battles we face, meet the 5 types of superheroes we meet on an (almost) daily basis…
5 – The Invisible Person
4 – Speak To The Hand
Indeed, some people use their hands to do the talking, and it’s almost as if we should take a few steps back – feeling The Force…
3 – Superhuman Focus
The eyes that can never leave the phone, the intense focus which nothing, not even a second to receive a BMDP brochure, can break.
2 – The Flash
Travelling at the speed of light, so much so that there are no way any personnel at the roadshows/ recruitment drive can catch them… at all…
1 – The Ice Queen
Gorgeous they may be but these ice queens with a heart of cold just let go of their chance to save a life. Because the coldness just doesn’t bother them anyway.
All jokes aside, don’t be sorry for us when you give us the superhero rejection … but you should perhaps take a moment to feel sorry for those patients who are denied a second chance at life. If you are reading this, then chances are you appreciate our work – so maybe stop by next time you see us and cheer us on with our work – maybe your lunch date or shopping partner would be willing to hear our story.
People may choose to avoid us, but patients can’t choose to avoid blood diseases. Something to think about…
The world is seemingly descending into chaos; countries posturing and making threats, national leaders playing with deadly new toys. They threaten not only their neighbours, but also global stability and innocent people randomly targeted in terrorist attacks.
Locally there are escalating discussions about the different racial groups in Singapore and what we need to do to sustain and further strengthen the social and cultural harmony that has been built over the last 50 years. In short, now is the time to really put the spirit in “Kampong” and make sure that every Singaporean knows the part they must play.
Through our work at the BMDP, we feel that we are truly representative of the very best in character and human spirit – we are indeed the “kampong spirit” in action. Reaching out with our story, that anyone can be struck down by a blood disease and at the same time, anyone can do something to help. We ask people to make a commitment that looks beyond boundaries and under our global mandate, the act of donation must remain one of total anonymity, without reward, payment and free of judgement. To be a bone marrow donor is to save a life – and the person in need could be just around the corner in our small island or across the globe.
Read our interview with Ustaz Tarmizi Wahid, founder of the Safinah Institute who shares his thoughts on how all Muslims in Singapore should support our cause. This is part of a series of conversations with different religious leaders to explore how doing what we consider the “right thing” resonates within their own religious teachings.
Recruiting bone marrow donors from within the Malay community has always been a challenge, and the reluctance to sign up is often attributed to worries that it may be against the Islamic faith. To explore this further, we spoke with Ustaz Tarmizi Wahid, Founder of the Safinah Institute and one of Singapore’s current generation of Islamic teachers.
Ustaz Tarmizi Wahid, Founder of the Safinah Institute
Q: Today there are concerns at many levels about the Malay community so what are your thoughts on these fears that the Malays are becoming marginalised from the rest of Singapore?
Tarmizi: Unlike our grandparents and parents’ generations, where teaching was all local and in the most part quite traditional, Singaporeans today are being exposed through more modern and diverse approaches. Also, with the rapid and vast influence of the Internet as well as through travel experiences, new ideologies are becoming more visible in the beliefs and practices of some local Muslims. As a result, Islam has become more “colourful” which sometimes includes extreme and often exclusivist forms of practicing the faith which most of us feel should not play a part in Singapore’s unique multi-cultural society.
After spending time furthering my own Islamic study overseas, I realised there was a need to help young Muslims within our own community to understand more about Islam, so they could find meaning as well as a deeper connection to the faith. To support this, I set up the Safinah Institute with the mandate to break down complex Islamic sciences and terminologies, so that everyone can appreciate the lessons and then practice with confidence and stand true to their faith.
Q: Why do you think so many people believe Islam does not allow them to be bone marrow donors?
Tarmizi: Some years ago, I was involved in the discussions around revising the HOTA (Human Organ Transplant Act). Historically, it started out with only the Malay Singaporeans being allowed to opt-in, while for everyone else it was the opt-out system. Within the first few years of HOTA being introduced, very few Malays came forward to pledge and become organ donors, and this was happening while the number of Malays in queue to receive an organ transplant were high. So upon review of the MUIS Fatwa Committee, and acknowledging the need to uphold the Islamic principle of ensuring the welfare and well-being of all, it was revised, and thus the Malays became a part of the HOTA system alongside everyone else.
Obviously, we had much discussion around this – MUIS and the various mosque and community leaders all contributed to the conversation – and we were all confident that in no way could we continue to remain out of the system. Likewise for bone marrow donation, there is absolutely no reason for a Muslim to not donate and in any event, it’s a very different proposition as bone marrow is replaced within just weeks.
Q: Some people have asked what happens if the recipient of the bone marrow is a non-Muslim, or they commit acts of sin? Am I responsible for this?
Tarmizi: There is a saying in Islam “that it is not the eye, but it is the sight; not the ear but the hearing” that will be accountable for their actions on the day of judgment. Everyone is responsible for their own decisions and a donor cannot be held to account for any harm that may be caused by the recipient of their bone marrow. This is a very limited argument and most likely a way to avoid or delay making a contribution altogether for other reasons that are unspoken. I ask the potential donors to focus instead on the positive aspect which lies in the act of giving itself.
Q: Are there any teachings within Islam that positively support the act of being a donor?
Tarmizi: There are numerous verses in the Quran and the Hadith which encourage people to go out of their way to help others who are in need and saving lives is part of this. In one we say, “it is wrong for a Muslim to go to sleep knowing his neighbour is hungry” which strongly endorses the gift that a bone marrow donor makes to a neighbour, albeit a stranger who may be half way across the world. Further Islamic teaching shares that “no one can truly believe if they do not want for their brother what they want for themselves”.
As a teacher within the Malay community, I would encourage our members to take on this noble initiative to become a bone marrow donor for no other reason than to sincerely alleviate others of their suffering. That is such a simple thing to do, and if you ever to be called up as a suitable match to a patient, then it would indeed be a reward for the donor in this life and the next.
Q: A young Malay donor recently made her donation during the month of Ramadan and some suggested this was wrong to break her fast at this time. Please share your thoughts on this.
Tarmizi: The process of donating bone marrow does not invalidate one’s fast. I applaud this young donor for her courage and selflessness for the act of giving and urge all to support anyone under similar circumstances.
As the WMDD 2017 Roving Roadshows event comes to an official closure after the last station at Marina Bay Link Mall on Friday, 29 September 2017, we would like to express our greatest appreciation to all who have helped made it a great and successful event!!!
Have you ever wondered what happens to the completed forms and buccal (cheek) swabs collected at BMDP recruitment drives and roadshows? Do we play pick-up sticks or fold paper cranes with them? No! They fall into the hands of our amazing CHECK-TEAM – a proud mother (Marsita), a gym enthusiast (Mira) and a foodie (Eva).
We are not suggesting for you to check them out (though no laws against that), but because their job is all about checking, checking and more checking. So much so that they developed that a keen eye for spotting errors.
From left to right: Mira, Marsita, Eva
When not mothering, gym-ing or cooking, they ensure the timely and accurate updating of the BMDP register working in a production line to first process the completed forms by checking and keying the information into the system. The swabs are barcoded, checked and then shipped to the United States (US) in batches of four hundred for lab testing, without the forms to ensure confidentiality. Once the data comes back from the lab, approximately 4-6 weeks later, the team will then check and enter the lab results into the system, using the barcodes as unique identifiers. You will then receive a welcome email from us, thanking you for joining BMDP as a volunteer bone marrow donor.
Sounds tedious? All these processes and checks ensure accuracy as well as confidentiality (personal data protection) of our donors. Now you understand why it takes a while before a person can be added the registry as a volunteer bone marrow donor.
|Did you know?|
The team processed a total of approximately 34,000 forms and swabs since the start of our recruitment campaigns two years ago – Project Tomorrow and Match for Life. That’s more than 1,000 forms and swabs to process per month!!! Adding to the pressure, they cannot afford any mistakes as it will affect the operational processes downstream for the Search and Selection Team and Donor Centre.
Disclaimer: No consent forms were harmed during the photoshoot
“The team can build up so much momentum processing the forms and swabs that we have an amazing adrenaline rush going!” Mira said, but further added that “the momentum can be frequently broken with erroneous forms…”.
Unfortunately, many forms arrive with errors and missing data and quite often the team get an earful when clarifying information with potential donors over the phone. As much as it pains the team to reject any potential volunteer donors, erroneous or incomplete forms that are not rectified must be rejected. With the challenging odds, 1 in 20,000, of finding a match, every rejection means another potential match lost for patients needing a bone marrow transplant.
“It is all about the teamwork, when there is an error, it is not one person’s responsibility, but the team’s, because we have each other’s back” Eva said.
The trust is undeniable from the looks on the faces
Kudos to the team for their efforts and endurance! Please help make their work easier by encouraging people to not just sign up to be a volunteer donor, but to fill up the complete form as accurately as possible (before being distracted by the gorgeous ladies)!
Each year, Malay patients seeking a bone morrow donation are robbed of their final chance at life because they cannot find a matching donor.
Chances of finding a bone marrow match outside one’s family are only 1 in 20,000, and it is most likely this match will come from within one’s own ethnic group. With only 8% of the total number of donors registered with the Bone Marrow Donor Programme (BMDP) from the Malay community, it is nearly impossible for Malay patients to find their life-saving donor.
Earlier this year, one leukemia patient found that 1 in 20,000 match in Noor Syafizah Bte Mahadi, who joined the BMDP register in 2014.
Syafizah chose to take the action to save a life
This generous young woman signed up after watching BMDP donor testimonies at her school. “I thought how amazing it must feel to be able to help save someone’s life,” she said.
Three years later, at age 20, she received a call notifying her that she was found as a match for someone in need—someone who would likely die without her help. She was preparing for her exams at the time and the donation was likely to be scheduled during Ramadan, a significant religious annual observance regarded as one of the Five Pillars of Islam.
“I was very surprised…I didn’t expect to be a donor because the possibility was only 1 in 20,000. What are the chances, right?” Syafizah said.
Despite having some anxieties about the procedure, it didn’t take her long to commit and make the lifesaving donation. “My friends were all very supportive – telling me to go for it. It’s rare to get the opportunity to save a life, so when it comes along, you have to take it,” said Syafizah.
Syafizah’s parents were also very supportive, despite being initially worried for their daughter. Like most people they weren’t familiar with bone morrow donation, and were concerned about possible long-term side-effects. Only after learning the fact that donors will recover 3-4 weeks after the simple procedure, they realised their fears were misguided. They encouraged their daughter to go through with the donation, knowing it was perfectly safe with no long-term side-effects.
Syafizah with her supportive parents
“We were shocked when she first told us”, said Mahadi Daonher, Syafizah’s dad. “When we learned more about it, our minds were put at ease, knowing our daughter was in safe hands and the procedure was straightforward, painless and with no long-term side-effects.
“We are extremely proud of our daughter. We believe it’s important to do what you can to help people, and this is what she did and we want to encourage other Malay parents to support their family members who are considering becoming a donor so other lives can be saved.”
Unfortunately, the Malay Muslim community is not always so supportive, not only because of misconceptions about the risks, but also due to concerns that donating bone marrow may be against the principles of Islam. This led to the serious underrepresentation of Malays on the bone morrow donor register.
However, many in the Malay Muslim community have commended Syafizah for her generosity, including Ustaz Tarmizi Wahid, founder of the Safinah Institute – a centre for Islamic education in Singapore.
“There’s nothing in the bone marrow donation process that goes against any of the principles of Islam. In fact, it’s quite the opposite. There are numerous verses in the Quran and Islamic tradition that encourage people to go out of their way to help people in need and save lives,” he said. He also noted that Syafizah should be seen as an inspiration for young people and Muslims alike to join BMDP’s register.
On September 16, World Marrow Donor Day, Syafizah was featured in the Straits Times, calling for more members of minority races to step up and join Singapore’s only bone marrow donor register.
“All it takes to join the register is a simple cheek swab. From there, you have the chance to be a life saver, said Syafizah.
“I was surprised at how painless and smooth the entire process was, she added. My parents were with me the whole time and I felt very well taken care of.
“I feel very grateful to have been able to do this for someone and always pray that the person I donated to is recovering well and goes on to have a good life and do good things.”
Every person facing a blood disease and in need of a bone marrow transplant deserves a chance at life. Having more Malays on the donor list means more lives can be saved and it all comes down to the simple act of registering.