Hedley Lewis: Championing Childhood Cancer Support and Global Health Initiatives 

Hedley Lewis

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Leadership style emphasizes openness, active listening, and teamwork, ensuring that CHOC continues to make a significant difference in the lives of countless families across South Africa.

Hedley Lewis serves as the CEO of CHOC, the Childhood Cancer Foundation South Africa. With a profound commitment to transforming lives, Hedley leads a dedicated team providing comprehensive support to children and teenagers diagnosed with cancer or life-threatening blood disorders.

Drawing from his extensive experience in the corporate world, particularly his impactful tenure at Vodacom, Hedley is passionate about fostering collaboration and aligning CHOC’s mission with global health initiatives.

Let us learn more about his journey: 

Inception Story of the Brand 

In 1977, Sister Sadie Cutland and her husband Julian experienced a life-altering moment when their firstborn, Hillary, was diagnosed with aplastic anemia at the tender age of seven. After two years of navigating this challenging journey, Sadie found herself leaving the hospital ward one day feeling particularly isolated. Despite the passage of time since Hillary’s diagnosis, she has yet to encounter another parent facing similar circumstances.

It was during this moment of reflection that Professor MacDougal planted the seed of an idea in Sadie’s mind: the notion of forming a support group for parents in Johannesburg who were grappling with similar situations. Encouraged by this idea, Sadie rallied a group of volunteers and parents in 1979 to establish what would become known as CHOC, a support network aimed at sharing experiences and providing much-needed support to one another.

The ethos of CHOC was deeply rooted in the personal experiences of its founders, who had traversed various emotional journeys alongside their children battling cancer or life-threatening blood disorders. This spirit of caring and sharing was fostered within the group, where individuals openly shared their experiences without reservation and with an abundance of love.

From these humble beginnings, CHOC emerged as the preeminent childhood cancer organization in South Africa, extending comprehensive support to thousands of families affected by childhood cancer. Today, CHOC stands as a registered non-profit organization comprised of dedicated individuals who are committed to championing the well-being of children and teenagers diagnosed with cancer or life-threatening blood disorders, as well as their families.

Recognized internationally for its efforts, CHOC endeavors to provide a range of life-changing support programs to both the affected children and their families from the moment of diagnosis onward. By offering psychosocial, emotional, and practical support, CHOC complements the efforts of the medical community, ensuring that families receive holistic care during their challenging journey.

What initially began as a simple desire for support has since blossomed into a lifeline for many in need, underscoring CHOC’s vital role in the lives of countless families facing childhood cancer.

Leadership in CHOC’s Collaborative Efforts 

Hedley is proud to lead a diverse and dedicated team of seasoned professionals who collectively strive to make a profound impact on the lives of patients and foster meaningful collaborations with a wide range of stakeholders. This inclusive approach ensures that patients receive comprehensive support from the South African National Department of Health, local health departments, hospital administrators, medical professionals, volunteers, donors, and partner non-governmental organizations (NGOs).

The team’s concerted efforts are focused on providing holistic support to children and teenagers diagnosed with cancer or life-threatening blood disorders, as well as their families, throughout their journeys. By working closely with stakeholders, CHOC aims to walk alongside these individuals, offering guidance, assistance, and comfort every step of the way.

Moreover, Hedley is committed to supporting CHOC’s alignment with the World Health Organization, particularly in striving to achieve the WHO-GICC’s 60% Goal for Africa by 2030. This dedication underscores CHOC’s commitment to advancing global health initiatives and ensuring that no child or family faces the challenges of cancer alone.

Empowering Social Impact 

Hedley’s dedication to serving on various boards and fostering stakeholder engagement in pursuit of shared goals for social change is deeply rooted in his formative experience at Vodacom. It was during his tenure at the company that he witnessed the transformative power of corporate social partnerships, an experience that profoundly influenced his future endeavors.

As a member of the Vodacom Foundation, Hedley had the privilege of directly observing how strategic partnerships could positively impact lives. This firsthand exposure had a profound impact on him, solidifying his resolve to lead an organization capable of providing vital, life-changing support to those in need.

Collaboration Facilitated Between CHOC and Department of Health 

CHOC’s longstanding and fruitful partnership with The National Department of Health, united by the shared mission of supporting patients and families through challenging times, fosters hope for every child to overcome their diagnosis.

One of Hedley’s core passions lies in building connections across diverse sectors, including the medical community and civil society. His aim is to align CHOC’s objectives with those of other organizations, ensuring that children benefit from these collaborative efforts. A prime example of this success is the ongoing partnership with the South African Association of Paediatric Haematology Oncology (SAAPHO).

Hedley’s role extends beyond CHOC as he serves as the Chair of Childhood Cancer International Africa and a SIOP Africa Board member – CO lead Patient User Network. These positions afford him the opportunity to share the valuable insights gained from CHOC with African countries that may have less developed infrastructure, thereby enhancing support for childhood cancer across the continent.

He firmly believes in transcending borders and oceans, viewing them not as barriers but as gateways to improved survival rates for children and teenagers with cancer. Hedley’s vision underscores the importance of global collaboration in achieving the shared goal of transforming lives affected by cancer.

Motivation and Resilience While Leading Organization 

Hedley draws motivation and resilience from multiple sources. Foremost among these is witnessing the tangible, positive impact CHOC creates in the lives of children, teenagers, and their families. This ongoing transformation serves as a profound source of inspiration, driving him to continue his efforts.

Additionally, the collaborative partnerships forged with entities such as the National Department of Health and hospitals, alongside their dedicated medical teams, reinforce the significance of CHOC’s mission. Witnessing the dedication and optimism of these professionals in their tireless pursuit to assist young patients further fuels his determination for success.

Moreover, personal satisfaction plays a crucial role in sustaining Hedley’s commitment and resilience. Despite the inevitable challenges and difficult realities inherent in the field, the knowledge that his work contributes to improving the quality of life for those in need remains deeply gratifying. This sense of purpose and the privilege of making a meaningful difference every day serve as constant sources of strength and motivation for Hedley.

Key Lessons Learned 

During his tenure at Vodacom, he was guided by mentors, advisors, and a deep commitment to creating meaningful change. The leadership lessons he learned during this time continue to inform his daily life and professional practices.

He emphasizes the critical role a team plays as the fundamental building block of any organization. Drawing from the Zulu greeting “Sawubona,” which means “I see you,” Hedley underscores the importance of acknowledging and validating individuals, recognizing their roles as team members, and appreciating their contributions.

Hedley describes his leadership style as one of openness and shared goals. To ensure the success of the organization, he values active listening to the thoughts and challenges his team members face, believing that a leader who does not listen can only advance so far. This approach fosters a collaborative and inclusive environment, which is essential for driving the organization forward.

Most Pressing Challenges  

While CHOC provides vital support to many, a vast number of children and families still remain in need. Hedley continues to hope for greater awareness of the Early Warning Signs of Childhood Cancer, which would lead to timely interventions and diagnoses. He acknowledges that delays in early cancer detection and transport constraints are significant barriers that families face.

Additionally, cultural beliefs and stigma surrounding cancer present challenges, necessitating a balance between timely treatment for the child or teenager and sensitivity to the family’s needs and beliefs.

To address these issues, CHOC’s ATE Programme trains nurses and retired nurses to promote cancer awareness and early detection in communities, aiming to increase knowledge and survival rates. Recognizing that families living far from treatment centers, particularly in rural areas, often struggle with transportation and financial constraints, CHOC provides comprehensive support to all patients. This support includes psychosocial assistance, accommodation, and transport during treatment, ensuring that families receive the help they need throughout their journey.

Most Vulnerable Children 

CHOC’s Awareness Training and Education (ATE) Programme is a nationally coordinated initiative designed to train healthcare professionals, healthcare workers, traditional health practitioners, and communities on the Siluan Early Warning Signs of childhood cancer. This program also imparts essential disease knowledge and aims to demystify myths and beliefs that stigmatize childhood cancer.

One of the key components of the ATE Programme is its outreach efforts in rural areas. By going into these communities, CHOC ensures that vital information reaches those who might otherwise lack access to it. The program includes distributing informative booklets and conducting training sessions to teach the early warning signs of childhood cancer. These efforts are crucial in promoting early detection and timely intervention, ultimately improving survival rates and reducing the stigma associated with childhood cancer.

Positive Impact of CHOC’s Work 

Xichavo, an 18-year-old Grade 12 student and the head of a child-headed household, faced immense challenges after losing his mother three years ago. Since then, he has been taking care of his younger brother and sister. His life took a dramatic turn when he was diagnosed with Osteosarcoma, a type of bone cancer. He vividly recalls the day of his diagnosis as one of the most terrifying moments of his life, feeling scared and alone with tears streaming down his face.

Throughout his treatment, Xichavo’s school showed incredible support by allowing him time off. Although it was a difficult decision, staying at the CHOC House in Diepkloof proved to be the best choice he could have made. There, he found a new family among the other children and received exceptional care from the CHOC staff. Zotha and the social workers treated him with the love and attention of their own children. Xichavo especially acknowledges Lawrence, the CHOC social worker, who went above and beyond to support him, providing transportation, food for his siblings, and emotional support. The doctors and nurses also played a crucial role in his care and recovery.

Having overcome cancer, Xichavo now dreams of becoming a chartered accountant to secure a bright future for his siblings. Thanks to the incredible care and support from the CHOC team, he is filled with hope and determination to achieve his goals.

Words of Wisdom 

Hedley believes that embracing collaboration is central to success. Operating in isolation can negatively impact the ultimate vision, especially in sectors where resources are limited. Duplication of these limited resources reduces their overall impact.

He emphasizes the importance of harnessing the strengths of the team, recognizing that an organization is only as strong as the team it leads. Building a team composed of passionate, strong individuals who are not afraid to challenge leadership is essential for growth and success.

Solution Labs, which create a safe space for engagement, are crucial for fostering innovation and strategic thinking. These environments encourage open dialogue and the development of creative solutions, driving the organization forward.

Balancing Professional Responsibilities 

Hedley recognizes that his identity and success are deeply rooted in his past experiences and the support of those who stand beside him daily. He strives to be present when with his family, cherishing special moments and engaging in activities they enjoy together, such as taking walks with his children and reading bedtime stories. Transitioning from his professional persona to his role as a family member is important to him, reflecting his belief that just as CHOC walks with many families, he should walk with his own.

Establishing clear boundaries between work and personal time is vital. By dedicating specific hours to work and protecting personal time, Hedley ensures a healthy balance. He relies on his support network of family, friends, mentors, and advisors for guidance. He places great importance on making time for family, friends, and hobbies, recognizing that these are as crucial as fulfilling work commitments. Staying connected to the passion and purpose behind his work keeps him motivated and fulfilled.

Hedley is grateful for his supportive family, which helps make this balance possible. Additionally, he emphasizes the importance of taking care of his health through regular exercise and adequate sleep, which are essential for his overall well-being.

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