A RE-CONNECT WITH ANITA OSASELE ESANGBEDO – A VIBRANT SICKLE CELL WARRIOR

Good afternoon Osas.  It is a great pleasure to meet and chat with you so many years after our last conversation in 2017.  To begin with, the 1st of May is a special day for you. It is your birthday.  But this one is extra special, being your 50th and particularly because you are a Sickle Cell Warrior.  How do you feel?

Good afternoon.  It’s such a pleasure to reconnect with you again.  Thank you so much for having me!

Turning 50 is truly a monumental milestone and, for me, it’s a chance to pause, reflect and feel grateful first to God.  Reaching this age as someone living with Sickle Cell disease is not just a personal victory; it showcases the great strength of the human spirit and also highlights the strides we’ve made.   I say we because I am referring to my family, my friends and myself in managing this condition.

I’m experiencing a whirlwind of emotions right now!  Where do I begin?

First and foremost, I am deeply grateful to God for preserving my life, to my lovely family and friends who serve as my rock and backbone, and to the dedicated medical professionals and researchers whose efforts have allowed me to thrive despite the challenges.

Alongside this gratitude is a profound sense of responsibility.  Now, more than ever, I feel driven to amplify my efforts in advocating for those who do not have the same access to care that I’ve been fortunate enough to receive.

And then there’s hope.  A powerful sense of optimism for a future where Sickle Cell disease doesn’t steal away the potential of bright young minds.  Instead, I envision it becoming a manageable condition, with a pathway to a full and vibrant life.

As I celebrate my 50th birthday, I don’t just want to reflect on my journey alone.  I’m determined to use this moment as a platform for change.  A way to amplify the voices of countless others facing the same struggles.  This milestone, for me, is about raising awareness and mobilizing resources to support those in our community who are yet to come to terms with this disease.

Today, I am reminded that each day is a victory and each year presents a new opportunity to make a meaningful impact.

For a Sickle Cell Warrior, 50 is a great landmark to celebrate.  What, for you, is most special for the day? 

Starting the day with God, reading my Bible, praying and, obviously, attending mass will by no means be the most special part of my day.  Then spend the remaining part of the day celebrating with close family and friends.  God has been merciful.

How do you plan to celebrate the day? 

This birthday marks not just a personal milestone but a broader opportunity for collective impact.

While there will undoubtedly be moments of joy and celebration (after all, you only turn 50 once😉) the core of this occasion is a strategic initiative aimed at raising awareness and mobilizing resources for the Sickle Cell community supported by the Noah’s Ark Foundation for Sickle Cell.

I intend to host a birthday breakfast that will also serve as the launch event for my first-ever book.  This book chronicles my journey living with Sickle Cell and acts as both an educational resource and a call to action.  Proceeds from the Book Launch will be dedicated entirely to supporting the Sickle Cell community, especially members of Noah’s Ark Foundation for Sickle Cell.

This Golden Jubilee celebration is an opportunity to gather friends, family, sponsors, and community members, those who have stood by me and contributed to the Foundation’s mission.  It will be a day filled with gratitude, recognition and a shared commitment to making a meaningful difference.

Here is a sneak peek into what the program entails.  It includes:

• A heartfelt address that sheds light on the challenges faced by Sickle Cell Warriors in Nigeria.
• The launch of my book, designed to educate and inspire fundraising efforts.
• A call for donations to support those affected by Sickle Cell disease.
• A celebration of life and the great strength of our community.

In conclusion, this celebration beautifully intertwines personal achievements with a directed effort to address a pressing need.  It’s a moment for me to give back while amplifying a cause that I have always held dear to my heart.

Fantastic!  Noah’s Ark is your special baby for which you have devoted a significant part of your life and resources.  Please enlighten us on what Noah’s Ark stands for in your life.

Noah’s Ark Foundation For Sickle Cell (NAFFSC) is more than just an organization to me; I consider it to be a lifeline, a verifiable proof of strength and courage, and a symbol of an unflinching hope.

It represents the possibility of turning personal pain into collective purpose.

You see, by virtue of my Sickle Cell status, I’ve experienced first-hand the challenges, the pains, and the systemic gaps in care.  But I have also come to understand that my experience, as difficult as it was and still is, is not unique.  There are countless others facing the same battles, often in silence and without support.

Noah’s Ark was born out of that understanding, that deep empathy and a burning desire to create a sanctuary.  We call it a safe harbour for individuals and families affected by Sickle Cell disease.  Just like the biblical Noah’s Ark, which offered refuge during a storm our Foundation aims to provide shelter, support and a path to safety for those going through the turbulent waters of this condition.

For me personally, Noah’s Ark stands for:

• A Voice for people living with SCD who are Voiceless: I am thankful to have created a platform that is being used to amplify the often-unheard voices of people living with Sickle Cell disease, to break the stigma and to advocate for their rights and needs.
• A Bridge to Hope: The NAFFSC is a bridge connecting patients to essential resources, quality care and the latest advancements in treatment. We strive to ensure that no one is left to face this disease alone.

• A Community of Strength: It’s a community where individuals and families can find solace, understanding and have a sense of belonging. It is a place where they can share their stories, find encouragement, and draw strength from one another.
• A Legacy of Change: It’s a commitment to driving systemic change in how Sickle Cell disease is perceived and managed in our society. We work tirelessly to raise awareness, educate the public and influence policy to improve the lives of those affected.
• A Source of Purpose: It has given my life a profound sense of purpose. Knowing that I can make a difference, that I can ease the burden for someone else, that is what drives me and gives me the strength to keep fighting, both for myself and for others.

Noah’s Ark is my heart’s work.  It’s the embodiment of my belief that even in the face of adversity, we can rise, we can heal and we can create a world where everyone has the opportunity to thrive.  It’s a living legacy of hope, courage and the power of human connection.

Wonderful!  What were your major goals in the establishment of Noah’s Ark?

The establishment of Noah’s Ark Foundation For Sickle Cell was driven by a set of interconnected goals, each addressing a critical need within the Sickle Cell community.

These goals are not static though; they evolve as we learn more and as the needs of our community change; but what is sure is that they remain rooted in a core commitment to improving the quality of life for people living with Sickle Cell disease.

Our primary goals include:

• Ensuring Access to Essential Care:

You will be right to call this the bedrock of our mission.  We recognize that consistent access to medication and basic healthcare is not a privilege but a right.  In a country like ours, where economic realities can exacerbate health disparities, providing free or heavily subsidized routine drugs and support is important.  It’s about alleviating the immediate burden of the disease and preventing avoidable crises.  This also means pushing for policies that make treatment more affordable and accessible within the broader healthcare system.

• Empowering Individuals Through Education and Self-Awareness:

Here at the NAFFSC, we believe that knowledge is power and as such, aim to equip Sickle Cell Warriors with a deep understanding of their condition, enabling them to make informed decisions about their health and advocate for their needs.

Beyond medical education, we promote self-awareness and self-confidence.  If we want to dismantle the stigma surrounding Sickle Cell disease, then we must empower individuals to live full, confident lives, free from the shackles of self-doubt or societal prejudice.

• Promoting Economic Independence and Self-Reliance:

One fact that we can all agree on is that Sickle Cell disease can create significant economic hardship.

The costs of treatment, frequent hospitalizations and the potential limitations it places on employment can create a cycle of poverty.  This is why we remain committed to creating pathways to economic self-sufficiency.

Our vocational training programs are designed to equip individuals with marketable skills, enabling them to escape the rat race, secure livelihoods, contribute to society and maintain their dignity.

• Advocacy and Systemic Change:

We strive to be a powerful voice for the Sickle Cell community, advocating for policies that improve access to care, increase research funding and promote greater awareness of the disease.

This involves engaging with government agencies, healthcare providers and other stakeholders to create a more supportive and equitable environment.

• Breeding a Supportive Community:

Living with Sickle Cell disease can be incredibly isolating.  This informed our goal to create a strong and supportive community where individuals and families can connect, share experiences and find emotional support.

This sense of belonging is important for mental and emotional well-being and it reinforces the idea that no one has to face this journey alone.

• Driving Research and Innovation:

Ultimately, we believe that a cure for Sickle Cell disease is possible and we are committed to supporting research efforts that advance our understanding of the disease, lead to the development of new treatments, and bring us closer to a cure.  This we do in partnerships with SCD organizations with similar goals as we are a member of the Coalition of Sickle Cell NGO’s in Nigeria.

In essence, Noah’s Ark Foundation is working to build a world where people living with Sickle Cell disease not merely just survive but thrive with access to the care, support and opportunities they need to live full and meaningful lives.

These are really ambitious goals!  What has been your relationship with the Sickle Cell Foundation Nigeria (SCFN) especially in relation to the goals of Noah’s Ark?

My relationship with the Sickle Cell Foundation Nigeria (SCFN) is one of deep respect as I consider them the first Sickle Cell NGO in Nigeria (correct me if I’m wrong) and a shared vision for a brighter future for those living with Sickle Cell disease.  I have long admired the impactful programs they’ve consistently delivered, programs that have touched and transformed countless lives.

Their effectiveness serves as a powerful inspiration, constantly spurring me and the Noah’s Ark Foundation to elevate our own efforts and reach even greater heights.

We are part of a larger movement.  I was introduced to the coalition of Sickle Cell NGO’s by the SCFN and both Noah’s Ark and SCFN are active and committed members of the organization, a collective force working collaboratively to achieve both individual organizational goals and our shared, overarching mission.  This collaboration is vital because the challenges posed by Sickle Cell disease are multifaceted and require a united front.

We recognize that by working together as a coalition, pooling our resources and leveraging our respective strengths, we can achieve far more than any single organization could accomplish alone.

In practical terms, this relationship manifests in several ways:

• Shared Learning and Best Practices:

We actively exchange knowledge, insights and best practices, learning from each other’s successes and innovations to improve our respective programs and services.

• Collaborative Advocacy:

We amplify our voices together, advocating for policies and systemic changes that will benefit the entire Sickle Cell community.

• Potential Programmatic Partnerships:

The NAFFSC is surely considering exploring concrete collaborations, particularly in areas like research funding and the development of impactful programs.  We believe that by combining our resources and expertise, we can accelerate progress towards finding more effective treatments and, ultimately, a cure.

• A United Front:

Our collaboration sends a powerful message of unity and solidarity to the Sickle Cell community, demonstrating that we are all in this together and that we are stronger when we stand together.

In essence, my relationship with SCFN is one built on mutual respect, shared purpose and a deep commitment to a future where Sickle Cell no longer limits potential or diminishes the quality of life.

Let us now talk about money.  How have you funded Noah’s Ark and what impact have the current economic realities had on the pursuit of the goals of Noah’s Ark?

Noah’s Ark Foundation has been primarily funded through the generous contributions of individuals who deeply believe in our mission.  These are friends, family members, business associates and passionate advocates who understand the urgent need for support within the Sickle Cell community.

In the past, we have also been fortunate to receive sponsorship from corporate organizations for specific meetings and programs.  However, the current economic climate has presented significant challenges to our funding efforts and, consequently, to our ability to achieve our goals.

The economic downturn has affected both individual donors and corporate sponsors, leading to a decrease in available resources.

A clear example concerns our commitment to providing essential monthly medications and provisions to our members.  During the COVID-19 lockdown, we went as far as prioritizing home deliveries of the same medications to ensure uninterrupted access to these critical supplies.

However, at some point, the economic strain forced us to make some very difficult decisions.  We had to adjust the frequency of our support meetings, shifting from monthly to bi-monthly and we were compelled to temporarily pause some of our impactful programs.

This economic reality has also underscored the need for strategic partnerships and collaborations.  We are actively seeking to engage with organizations that share our commitment to supporting the Sickle Cell community.  We believe that by pooling resources and expertise, we can enhance our impact and ensure the sustainability of our programs.

Despite these challenges, we remain steadfast in our dedication to our mission.  We are exploring diverse funding strategies and sources to ensure the long-term viability of Noah’s Ark Foundation.  We are expanding our fundraising efforts to include grant applications, partnerships with other non-governmental organizations, etc.

 

Can you be a bit more specific?

• Building Strategic Partnerships:

We are actively seeking collaborations with corporate organizations, Foundations and Government Agencies to secure sustainable funding and expand our reach.

• Enhancing Transparency and Accountability:

We are committed to maintaining the highest levels of transparency and accountability in our financial management to ensure that every donation is used effectively and efficiently.

• Developing Social Enterprise Initiatives:

NAFFSC is exploring opportunities to generate income through social enterprise ventures, which will enable us to become more self-sufficient and less reliant on external funding.

I’ll say that the economic challenges have no doubt impacted our operations, but I also believe that it has reinforced our resolve to find innovative and sustainable solutions.  We are confident that through strategic partnerships, diversified funding and, of course, our solid commitment, Noah’s Ark Foundation will continue to make a significant difference in the lives of people living with Sickle Cell disease.

We wish you success in your funding efforts.  So what have been your major achievements since the establishment of Noah’s Ark?

Since its inception, Noah’s Ark Foundation has been dedicated to tangible and transformative impact within the Sickle Cell community.  We’ve consistently strived to not only alleviate the immediate challenges faced by individuals but also empower them to thrive and live fulfilling lives.

Our major achievements include:

• Sustained Provision of Essential Care:

For over a decade, since 2011, we have successfully maintained a program of distributing essential medications and provisions to our members. This represents a monumental achievement, a solid proof of our commitment to those whom we serve.

In an environment like ours where access to these vital resources can be inconsistent, Noah’s Ark has been a lifeline, ensuring that our members receive the support they need to manage their condition and improve their quality of life.

• Empowerment through Education:

We believe that knowledge is a powerful tool for change and as such, Noah’s Ark has been instrumental in providing educational, vocational, and medical scholarships to deserving individuals within the Sickle Cell community.

This initiative not only invests in their future but also equips them with the skills and expertise to become self-sufficient, contribute to society, and break the cycle of limitations that Sickle Cell disease can impose.

• Cultivating Self-Reliance and Confidence:

One of our proudest achievements is our role in cultivating a generation of self-reliant Sickle Cell warriors.  We understand the profound impact that self-esteem and confidence can have on an individual’s ability to navigate the challenges of this condition.

Through targeted programs, workshops and mentorship, we have empowered individuals to embrace their identity, overcome obstacles, and become advocates for their own well-being.

• Building a Supportive Community:

Beyond these specific programs, Noah’s Ark has created a strong and vibrant community where individuals and families affected by Sickle Cell disease can find solace, support and a sense of belonging.  This network is a source of strength and hope, reminding everyone that they are not alone in their journey.

• Driving Awareness and Advocacy:

We have actively worked to raise awareness about Sickle Cell disease, challenge stigma and advocate for policies that improve the lives of those affected.  This mission has seen us go to schools, churches and organizations.

We believe that by amplifying the voices of individuals with Sickle Cell, we are contributing to a broader movement for change.

These achievements represent significant strides towards our vision of a world where Sickle Cell disease does not limit potential or diminish the quality of life.

We acknowledge the power of collective action, the generosity of our supporters and the brave spirit of the individuals we serve.

Noah’s Ark Foundation is committed to building on this foundation, expanding our impact and continuing to create lasting change in the years to come.

 

How do you plan to go forward bearing in mind the difficulties of the times?

 

The difficulties of our time, particularly here in Nigeria, demand that Noah’s Ark Foundation not only perseveres but also innovates and evolves.

We understand that we must remain both resolute and resourceful, adapting our strategies to navigate the current economic realities while remaining focused on our long-term vision.  Our path forward is defined by several key principles and strategic directions.  The goal is to embrace sustainable solutions and diversified funding models.

Community-based Resource Mobilization is yet another strategy we have in the works.  The goal for us is to empower our community to contribute to the sustainability of the Foundation by exploring avenues such as community fundraising drives and volunteerism.

Leveraging technology and innovation for Digital Health Solutions is another top consideration of ours.  We will explore how technology can improve access to care, enhance patient education and facilitate remote monitoring.

By embracing these strategies, Noah’s Ark Foundation will not only weather the current storm but emerge stronger and more effective in our mission to improve the lives of people living with Sickle Cell disease in Nigeria.

We are committed to innovation, collaboration and a relentless pursuit of a future where everyone has the opportunity to thrive, regardless of their health status.

That is wonderful and we can only wish you the very best in your endeavours.  Thank you so much for sparing the time to chat with us again and HAPPY GOLDEN JUBILEE!  And talk to you again when you hit 60!

Thank you so much for the well wishes and for this wonderful conversation.  It’s been a pleasure sharing our work here at NOAH’s Ark Foundation For Sickle Cell with you.  I look forward to continuing this important dialogue and working together towards a brighter future for the Sickle Cell community.  And yes, God willing, let’s talk again soon, before 60 or at sixty!