September is Childhood Cancer Awareness Month. It is our pleasure to share the story of the Just Because Foundation as told by its co-founder, Noel Joseph, in this month’s Advocacy Works! Spotlight.
How did the Just Because Foundation get started?
We launched the Just Because Foundation (JBF) on August 2nd 2007 and our purpose was two-fold. The foundation was established to preserve the memory of our son Jabez 'JB' Joseph (who would have celebrated his 6th birthday on that date) and to create a legacy for him. Having been diagnosed with Alveolar Rhabdomyosarcoma in 2005 at three and a half (3 ½) years of age, JB exhibited amazing courage and faith throughout his two-year battle. Rhabdomyosarcoma (RMS) is a rare, aggressive, and highly malignant form of childhood cancer.
JB's journey took us into the heart of several aspects of the healthcare system for children in Trinidad and Tobago. In searching to find a path to his wellness, we encountered many areas in which there were gaps in the treatment and support systems for children with cancer and their families. In fact, most of the JBF projects were created because those specific components simply did not exist at the time. We decided to make ourselves and our services available to assist and support families of children with cancer throughout all aspects of their journey.
“See a need...fill a need.” Over the past 9 years, this motto has been made into a reality wherever possible. Its impact serves not only the children of Trinidad and Tobago, but also those who venture here from other islands in the region.
Vision and Mission
Vision: To become the Caribbean’s leading resource in the provision of comprehensive and holistic support services for children with cancer and their families.
Mission: To provide practical, social and emotional support for families of children with cancer. We will work with diverse professionals to raise awareness of the incidence, possible causes and treatment of Paediatric cancer while promoting the overall health and well-being of children afflicted with this disease with the intention of improving their quality of life.
We will pioneer new support programs and liaise with local, regional and international organisations in search of ways to improve our service to the affected families. Our services will be delivered in a manner that will not discriminate against any individual or family on the basis of race, religion, sex, national origin or financial ability.
We advocate for children with cancer and their families. The pain, burden and challenges of childhood cancer affect all members of the family. For example, we have established specific support mechanisms that help us to focus on the following:
- JBF Siblings Club: To evaluate and treat with the emotional responses of the siblings of children with cancer.
- JBF OncoDads: An avenue for the fathers to openly share their experiences and points of view on dealing with the ordeal, faith, family and their future.
- JBF Embrace: Peer support for parents who have suffered the loss of a child due to cancer. Discussions on coping, support, moving forward, and honouring the legacy of their angel.
Below you can view one of our recent projects - a music video sung by children battling childhood cancer. The project has given these children a voice and allowed them to become their own advocates, telling their own stories. All of the performers in the video are patients at various stages of treatment.
From personal experience we have taken a comprehensive approach to advocacy and support. In order to sustain our operations and multiple projects, we depend on the generosity of many individuals, organisations and companies. We work diligently to develop new and creative ways of fundraising, which include the sale of JBF-Branded merchandise and unique events such as the Kiddi K and the Cancer Kids in Concert. Donations and funds are applied to the following:
• Assisting with the purchase of Chemotherapy and other meds.
• Sourcing of medical equipment. Infusion Pumps, Pulse Oximeters, Suction Machines etc.
• 'Home Away from Home' Short Term Accommodation.
• Delivery of samples to various labs for testing.
• The provision of items such as wheel chairs, crutches, ripple mattresses etc.
• Transportation to and from treatment centres and events.
• Celebration of patient birthdays – at hospital, home, or school.
• Celebration of National Holidays and special days at the JBF Unit at the children's hospital. (Eid, Divali, Christmas, Mother's Day, Independence Day etc.)
• Grocery and Market Produce Hampers. Toiletries.
• Play Therapy at hospital.
• Awareness campaigns. Print, Radio, Television, Live Lectures, Presentations.
• Bereavement Support.
• Advisory services and Peer Counselling.
The preceding is a shortlist of services provided by the JBF at NO COST to the families and is based on available resources and careful assessment of the specific request or need.
• The launch of the JBF Home Away from Home – providing short term accommodation for families of children with cancer who live in remote parts of Trinidad, Tobago, or from within the Caribbean region including children from Guyana, St. Kitts, St. Vincent, Antigua, St. Lucia and Grenada.
• 2008 saw the launch of the JBF Paediatric Specialty Unit. This is a powerful collaboration between the Foundation and the NCRHA. The first family-centered multi-disciplinary children's ward in the English-speaking Caribbean.
• JBF KIDDI K Children's Walk Against Paediatric Cancer. One of the biggest annual support walks in support of children's health. The Kiddi K is really several events in one. That is, a health and fitness fair, a bazaar, and a mini concert.
• JBF H.O.P.E. Concert. HOPE is the foundation's credo and it's an acronym that stands for Have Only Positive Expectations. This biennial event is very unique because it features performances by some of the patients, parents, nurses and doctors as well as celebrities.
• 2010 Launch of the JBF Smoke Out Tour. An interactive, educational and entertaining lecture on the effects off tobacco use – 1st ,2nd and 3rd hand smoke. The potential risks of using e-cigarettes/vaping as well as the dangers of the use of energy drinks.
View our newest Public Service Anti-tobacco advertisement I Am Cigadeath below:
The JBF has had the honour of being presented with the following awards:
• Ms. World Pageant – South Africa Gabby Walcott Beauty with a Purpose Winner – Best Charity Project in the World 2008 - JBF Paediatric Specialty Unit.
• First Caribbean International Bank Unsung Heroes Award - 2008.
• Trinidad Express Media House – Individuals of the Year Award - 2008.
• Gayelle The Channel- Pierrot Award for Community Service - 2008.
• Ministry of Health Certificate of Recognition - Contribution to improving the quality of healthcare provided to the population – 2009.
• National Association for the Empowerment of African People. Humanitarian Service Award - 2010.
• Ministry of Sport – Spirit of Sport Award (SOSA) Sport for a Social Cause - 2013.
• Dr. Eric Williams Memorial Committee. Father of the Nation Medal of Honour (Gold) Child Care & Community Service - 2015.
Message to others
Early detection saves lives! We want parents, guardians, uncles, aunties, grandparents, everyone, to be more vigilant. Visit our website to view lists of the most prevalent types of childhood cancer and their accompanying warning signs. These lists are not intended to make anyone panic or paranoid, it's all about securing your child's future. Even if the sign turns out to be unrelated to cancer, give thanks and remain observant. It would have been worth the time, attention, dedication and affection given to your child.
We would like to thank God for the strength given to us that enabled us to endure despite our grief, and the faith, focus and vision to now take our experiences and skills to serve others. We wish to thank everyone who, through words or deeds, have helped to propel the JBF cause. We recognize those in authority who have made executive decisions and had confidence in us to make the JBF Paediatric Specialty Unit a reality. Thanks to the Ministry of Health and to the Board and Management of the North Central Regional Health Authority (NCRHA). We thank those in the Private, Public and Civil Society Sectors who have made significant financial and material donations, volunteered, offered prayer and words of encouragement and yes...we are even grateful to the naysayers.
In the future, we would like to see:
• More medical personnel (doctors, nurses and support staff) trained in paediatric oncology. Though childhood cancer represents a small portion of the national cancer statistic we must be prepared to give adequate care to the next generation and not sit back and concede defeat to a life-limiting illness.
• We would like ongoing research to be done to quantify and to validate the work of NGOs, FBOs, CBOs and other civil society groups in the health sector across the Trinidad and Tobago. This should encompass – but not be limited to - Reach, Capacity, Training, Employment, Impact and Value of resources provided.
How can persons volunteer with your organisation?