Roots & Gene’s Aims and Objectives
R&G Foundation is a Not-For Profit Social Enterprise
Nature of business
Our aim is to facilitate and bridge the gap between detection and screening of Cancer and other NCD’s in order to improve good health and well-being globally, but with particular urgency in low and middle-income countries.
We are bringing every person to the centre of their own and their families health history, monitoring and treatment.
Scope
This business plan is an internal document to R&G F to set out our vision, values, our dreams, aims, and plans for years 2025-2030. This plan will guide our relationships with customers, regulators, hospitals, governments and supporting organisations.
Vision Statement
The cancer journey begins with detection and Our vision is a world where cancer and other NCD’s are diagnosed early, resulting in far better health outcomes for all.heavily rely on early detection. We hope to increase early detection through:
Values Statement
As a matter of principle, we believe in equal access for all, to all the tools of enhanced health.
Mission Statement
The cancer journey begins with detection and
To provide a data based resource which allows health professionals, institutions and governments to identify those most at risk of NCD’s and targeting them for early detection and screening.
To enable and empower people to take control of their NCD’s health outcomes by being initiators and masters of building their own NCD risk story.
early detection through:
Inspiration and Origins
In the summer of 2014, Theresa Nkatya Kalunga only by chance, was found with cancer whilst being examined and treated for something else. Unfortunately, it was determined as stage Three which meant that it was too far gone and her life expectancy was at best a couple of months. Theresa departed on the morning of 13th October 2016.
However, Theresa’s cancer journey unexpectedly revealed the reality that the family had been and were still living under the shadow of cancer because years earlier, Theresa’s young sister (Peline) had died of cervical cancer and whilst Theresa herself was undergoing treatment, her younger brother (Hubert) was diagnosed with liver cancer and he passed on within the same year of diagnosis (2015). But the cancer map went much further back and was yet to continue in the years that followed. After Theresa’s death, it came to light that their mother (Ephemia) had died of cancer (1970’s), and after Theresa’s death, her immediate brother (Marcel) was diagnosed with prostate cancer too (2017). In one family, it was one occurrence too many, to be coincidental. And the shadow continues, with Peline’s son (Augustines) being diagnosed with prostate cancer (2021).
![Mrs T [Smiling]](https://theresa.astutedigilab.com/wp-content/uploads/elementor/thumbs/Mrs-T-Smiling-rdwo60r6f3hnngoq37fwajdkexa1cuxw5l8gy0x9xk.jpg "Mrs T [Smiling]")
Cancer arises from the transformation of normal cells into tumour cells in a multistage process that generally progresses from a pre-cancerous lesion to a malignant tumour. These changes are the result of the interaction between a Persons Genetic factors and external agents known as carcinogens (physical, chemical and biological carcinogens). Whilst the external agents are known and we all can take informed action to protect ourselves, Genetic factors to the largest extent are unknown by most people and families, leaving us all at best powerless and no personal data to inform and guide our own pro-active action, and so we doing nothing.
This has inspired formation of the Roots and Gene’s Foundation which has been set up in Theresa’s memory to specifically tackle head on the problem of early detection through the use of personal genetic factors information in order to enable health professionals and institutions, institutions of research and medicines, governments, non-governmental organisations and all charitable and non-charitable organisations to better target and deliver the limited resources effectively and with increased better outcomes to those most at risk, and to further empower and equip most at risk individuals and families with knowledge to guide their own pre-emptive action for early diagnosis.
What and How?
In low and middle income countries, there is little information and no systems available to inform doctors diagnosis of cancers and other NCD’s, unlike the wealth of information built up and available in high income countries. WHO states this as one of the fundamental challenges to early detection and treatment of NCD’s. In its charter, one aim is to develop standards and tools to guide the planning and implementation of interventions for prevention, early diagnosis, screening, treatment and palliative and survivorship care.
In Developed nations, cancer screening is saving Tens of Thousands of lives but it is costly. To make it cost effective, family medical histories held by General Practitioner Doctors showing a history of cancer deaths or occurrence within families, allows for targeted screening programmes for the various cancers, strokes or heart diseases; which allows early detection.
Although Thousands continue dying of Cancer in Zambia and across most low income countries, this information is not being collated or managed in a manner which allows any referencing to, for purposes of targeted screening and there are currently no systems planned for an information led database which can be used by health professionals as well as members of the general public to identify those most at risk.
The Root and Gene’s Foundation platform is an information database which serves as a resource for evidence led screening.
The Cancer information database evolves from a Family Tree / Genealogy spine. Leading by example, it starts with Theresa and Michaels own family tree branch which in addition charts out their cancer footprint. Their extended families will add on their branches and other families in the country will be encouraged to map out their own family trees and any Cancer / NCD footprints within. To ensure validity of information, the platform will have a facility for uploading simple medical diagnosis proof or cause of death certificates.
Theresa and Mike’s Angels Cancer Foundation would like to come to an agreement with government and Hospital authorities about being provided access to cancer patient information within their domain in order that together with that collected via the family tree, it may be incorporated into a formal digital database which can be accessed nationwide by healthcare professionals for the purposes of screening and early diagnosis of cancer. Agreements on access to and processing this data which is private and highly confidential should include an agreement and protocols for ensuring safekeeping. Theresa and Mike’s Angels Cancer Foundation volunteers will provide the manpower for collating this information.
It is essential that the platform operating primarily as a Family Tree / genealogy platform remain fun, useful and a source not only of information for families to trace their roots and surviving relatives and to reconnect with those still alive, but also a place to curate and bring every families ‘Back-Story’ to life. With people engaged and dumping information on the platform, the Cancer data will over a few years slowly build into a substantive database which will reveal interesting family, regional, national or even age, gender and ethnicity patterns of cancer occurrence and types. Some patterns could be glaringly obvious as in the case of Theresa’s family, where a family readily recognise the Cancer / NCD footprints and initiate screening either privately or through state health systems; or that health practitioners identify them through those already in their care for other issues which present similar symptoms.
To eventually accurately map Cancer occurrences and probability within families and a nation, volunteers from Theresa and Mikes Angels Cancer Foundation will input as many historical hospital positive diagnoses onto matched family trees. Potential gene susceptibility within family trees will become evident and with this resource available to clinicians, I will aid early diagnosis thereby increasing survival rates. This will also become an important resource for researchers as well as drug companies and the platform will easily then be extended to other medical conditions such as susceptibility to strokes, heart conditions and diabetes.
Cancer
Cancer is a generic term for a large group of diseases that can affect any part of the body. It arises from the transformation of normal cells into tumour cells in a multistage process that generally progresses from a pre-cancerous lesion to a malignant tumour. One defining feature of cancer is the rapid creation of abnormal cells that grow beyond their usual boundaries, and which can then invade adjoining parts of the body and spread to other organs, the latter process is referred to as metastasizing. Metastases are a major cause of death from cancer. The cell changes are the result of interaction between a person’s genetic factors and external agents, including, physical, chemical and biological carcinogens.
NCD’s
Key Facts Globally
Cancer is one of the leading causes of morbidity and mortality worldwide with approximately 14 million new cases (2012)
The number of new cases is expected to rise to about 70% over the next 2 decades
Cancer is the second leading cause of death globally, and was responsible for 8.8 million deaths in 2015. Globally, nearly 1 in 6 deaths is due to cancer
Approximately 70% of deaths from cancer occur in low and middle income countries
Late stage presentation and inaccessible diagnosis and treatment are common in low and medium income countries
- Only 35% of low-income countries have pathology services in public sector
- Less than 30% of low-income countries have treatment services available. More than 90% of high income countries
Only 1 in 5 low and medium income countries have the necessary data to drive cancer policy
Early diagnosis
When identified early, cancer is more likely to respond to effective treatment and can result in greater probability of surviving, less morbidity, and less expensive treatment. Significant improvements can be made in lives of cancer patients by detecting cancer early and avoiding delays in care (WHO).
Early diagnosis comprises awareness, clinical evaluation, diagnosis and staging, leading on to access of care and treatment. Programmes that reduce delays in, and barriers to early diagnosis are the essential first step especially in low and medium income countries.
Screening aims to identify individuals with abnormalities suggestive of a specific cancer or pre-cancer who have not developed any symptoms and refer them promptly to diagnosis and treatment. As such, screening programmes are a far more complex public health intervention compared to early diagnosis. But this complexity can be mitigated and reduced significantly by utilising a targeted approach of screening those identified with a genetic foot-print first. This system is already utilised in high income countries which posses robust and integrated information systems and General Practitioner networks across all communities.
The Roots and Gene’s Foundation Aims and Objectives
1. Mapping
The cancer journey begins with detection and diagnosis as a sufferer, and successful outcomes heavily rely on early detection. T&M’s Angels Cancer Foundation has inspired the innovation and launch a Roots and Gene’s Platform.
The Roots and Gene’s Platform will help map cancer occurrence within families, ethnicities, communities, countries, regions and continents.
The Roots and Gene’s Platform will provide the data for targeted diagnosis of high and medium risk people within families, ethnicities and communities.
The roots and Gene’s platform will accurate data on prevalence, detection, cure and the effectiveness of types of cures within different regions of people with different genetic make-ups.
2. Detection
3. Screening
The cancer journey begins with detection and diagnosis as a sufferer, and successful outcomes heavily rely on early detection. T&M’s Angels Cancer Foundation has inspired the innovation and launch a Roots and Gene’s Platform.
The Roots and Gene’s Platform will help map cancer occurrence within families, ethnicities, communities, countries, regions and continents.
The Roots and Gene’s Platform will provide the data for targeted diagnosis of high and medium risk people within families, ethnicities and communities.
The roots and Gene’s platform will accurate data on prevalence, detection, cure and the effectiveness of types of cures within different regions of people with different genetic make-ups.
The Root and Gene’s Platform will be expanded to include mapping of all Non-Communicable Diseases such as heart diseases and diabetes.
The peoples of Africa aspire to a future of good health and well-being. The health and health-related Sustainable Development Goals (SDGs) build on this hope, providing guidance to ensure that no one is left behind as the continent progresses towards sustainable and equitable health. To achieve this, a coherent and logical approach to the adaptation of the SDGs is needed, to ensure that the health dividend accrued in the coming years is enjoyed equitably and plays its role in accelerating the development of the continent.
Reducing the cancer burden
Between 30–50% of cancers can currently be prevented. This can be accomplished by avoiding risk factors and implementing existing evidence-based prevention strategies. The cancer burden can also be reduced through early detection of cancer and management of patients who develop cancer. Many cancers have a high chance of cure if diagnosed early and treated adequately.
WHO response
- increase political commitment for cancer prevention and control;
- coordinate and conduct research on the causes of human cancer and the mechanisms of carcinogenesis;
- monitor the cancer burden (as part of the work of the Global Initiative on Cancer Registries);
- identify priority strategies for cancer prevention and control;
- generate new knowledge and disseminate existing knowledge to facilitate the delivery of evidence-based approaches to cancer control;
- develop standards and tools to guide the planning and implementation of interventions for prevention, early diagnosis, screening, treatment and palliative and survivorship care;
- facilitate broad networks of cancer control partners and experts at global, regional and national levels;
- strengthen health systems at national and local levels to deliver cure and care for cancer patients;
- provide global leadership as well as technical assistance to support governments and their partners build and sustain high-quality cervical cancer control programmes; and provide technical assistance for rapid, effective transfer of best practice interventions to less-developed countries