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Open letter to government and business leaders

Open letter to government and business leaders

Fellow Leaders in Government and Business in South Africa,

As I’m sure is the case of many leaders across the country, I spent last Thursday evening listening to President Cyril Ramaphosa delivering the State of the Nation address with keen interest as an active contributor to the economy and the social impact sector in this country.

There were many statements that resonated with me for multiple reasons, but my interest was heightened when our President spoke of the Small Business Incubation programme. He made a specific statement and I quote: “We call on all companies, both big and small, to participate in this initiative and thereby contribute not only to building their business but also to building the economy and fostering social cohesion.”

As the leader of an NGO, dependent on funding and particularly on the goodwill of all South Africans, I spend many days in meetings with business leaders to engage them in sharing our vision as an organisation and to encourage them to support our work. However, as simply as the President issued one call, it dawned on me that the work that we do and the level of support that we need is of national concern and quite frankly should enjoy priority and attention on a national level.

The fight against blood diseases has for a long time been a little known or understood body of work only really embraced by individuals when it affects someone close to them in their business or personal lives.

The Sunflower Fund has for the past 19 years been part of this fight by recruiting (bone marrow) blood stem cell donors to give the hope of cure to children and adults in need of a life-saving blood stem cell transplant. As we engage daily with business, government and communities, we are reminded of how much work there still is to be done, to educate people and make them aware of the urgent need for blood stem cell donors in South Africa and across Africa as a whole.

In 2017, we set out to transform our organisation to increase our impact and to do more towards getting more patients to transplant. At the start of 2018, we submitted an application to the World Marrow Donor Association to become a registry and received approval of our application on Human Rights Day, which filled us with great enthusiasm to build on our past successes and grow our influence and impact across our continent.

One year into our journey we reflect, as has our President, on the year gone by and it pains me to not wholeheartedly be able to agree with his words that paraphrased said we will celebrate the triumph of hope over despair.

In our field of work, every new donor that we recruit, keeps the hope alive for a patient with a blood disease like leukaemia who is in search of their life-saving match. Finding this match is currently a probability of 1:100 000 and unfortunately contrary to our vision there are still many patients dying without finding that match.

As I reflected on the President’s words, I was haunted by a call I made recently to a mother that lost her 13-year old daughter 7 months ago. The call was on what would have been her 14th birthday. President Ramaphosa said: “We must spend this year, the 25th anniversary of our freedom, asking ourselves whether we have built a society in which all South Africans equally and without exception enjoy their inalienable rights to life, dignity and liberty.”

The inalienable right to life, equally and without exception… That statement hit a nerve. It pains me to think of the many young lives lost and the many boys, girls, men and women in our country still hoping that their search will yield a match from every new donor we recruit.

A year ago, like our beautiful country, we as an organisation set out on a path of growth and renewal. This path was met with great challenge and cynicism from some and also with anticipation and hopefulness from patients and families who are still fighting.

However just as many reached out to other South Africans to lend a hand where others were going through difficulties, we’ve been encouraged by people from all walks of life that have stepped up to register as blood stem cell donors to help patients with whom they have no personal link, simply because they want to help and make a difference.

As I sat and listened to our President’s words, as we reflect on the year that has passed, we can attest to meaningful progress, I was and am filled with optimism because yes, it has been a year of meaningful progress for us too. We became the founding members of the Stem Cell Registry Alliance – a joint initiative of registries and organisations from the UK, Caribbean and Africa who are committed to recruiting donors of African descent. We also increased the level of DNA testing for our donors to 11 Loci, which is above the global standard and a first for Africa. We’ve carried the torch not only for South Africa but for Africa to be recognised within the global donor registry network as providing leadership and innovation to benefit patients of African ancestry.

As such, our patients are much more hopeful about a better tomorrow.

Their hope, to borrow our President’s words, is not baseless; it is grounded on the progress that is being made. 

We are also pleased to have experienced the spirit of active citizenry

And yes, we are determined to stay the course.

We are undaunted by the considerable difficulties we have yet to overcome on this journey.

Fellow Leaders,

Just as South Africans who are eligible to vote have been urged to register, I urge all government and business leaders who are under 45 years of age, to register to become blood stem cell donors. As we have led in our pursuit to unify people, grow the economy and create an enabling environment for small businesses to expand, let us forge a path by which, through our example, others within our organisations will be able to heed the call to register not just to exercise their rights but to register to be the hope for someone that might be waiting on them as the only life-saving match for a transplant.

Fellow South Africans,

Again I borrow words from our president that truly inspired me. “We are a people of resilience, of determination and of optimism”. 

It was the eternal optimism of the human spirit that kept hopes alive during our darkest time and I am optimistic that this human spirit will move some of our patients beyond hope on the path to cure as we unite to get more of them to transplant.

It is this optimism that will carry us forward as we face a brave new future.

It is a South Africa whose leaders are bold and courageous, leaders who remain servants of the people – and for whom fulfilling their duty is the highest, and the only, reward.

These leaders include you and me.

The task before us is formidable.

I call upon every South African to make this cause your own. If you are between the ages of 18-45, contact The Sunflower Fund and register as blood stem cell donors. It will cost you nothing except a voluntary donation if you are in a position to donate. A patient stands the best chance of finding a match within the same ethnic group as them. As such, we need a diverse registry of donors representative of all the people of our rainbow nation. Our diversity makes us unique, but this same diversity provides challenges for the medical transplant community because our unique mixes of DNA are underrepresented in the global donor pool.

The Sunflower Fund has committed itself to growing the registry of donors in South Africa, by recruiting 10 000 donors per annum. This target is steep given the financial burden that we carry of paying the cost of R3 100 per DNA test for every donor that we recruit. But we rely on your response and your support as we take this on.

I conclude by reiterating the words of Theodore Roosevelt, who said:

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. 

“The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”

Mr President you are right, we all have a role to play as individual South Africans, faith-based organisations, sports organisations, trade unions, business, students, academics, citizens and the NGO community.

You said it so aptly, let us continue to embrace the spirit of citizen activism in line with the injunction, Thuma Mina. We often hear our political leaders call on us citizens to step up and make our vote count.

Will you, our servant leaders respond to a call to step up and support a fight for freedom from disease? You have the power to save a life. It is in your genes.

Register to become blood stem cell donors, fund the fight against blood diseases and use your influence to encourage your staff and party members to help us save lives.

We at The Sunflower Fund are counting on you.

On behalf of the many patients living in hope, I thank you…

YouTube video link https://www.youtube.com/watch?v=J6vIuA5k2n0

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