Cerebral palsy is not a disease – Benola Ambassadors

By: Chioma Umeha

Penultimate week, the world marked the Cerebral Palsy (CP) Day. The World CP day is commemorated yearly, on the first Wednesday in October. But, the celebration this year was special for many reasons in Nigeria, as Benola Cerebral Palsy Initiative, Lagos, seized the opportunity to honour their partners and others for their efforts in supporting the organisation in its work in the area of CP. 

Among those recognised were Uchenna Ogochukwu Makueke and Oluwabusola Claudia Akisola. Akinsola, is a project officer with Children Development Centre (CDC), Surulere and Madueke, a teacher at Open Doors Special Education Centre, Jos, Plateau State thanked Benola for making them ambassadors. Uchenna was born in Jos, September 29, 1975, and had her primary education at University of Jos Primary School before proceeding to Tempest Comprehensive High School. She later attended the University Jos and graduated 2001, with a Diploma in Special Education with upper credit. Uche, as she is fondly called then served from 1998 to 1999 as a teaching assistant at the Special Education Model Teaching Centre of the University of Jos and has been a teacher at Open Doors Special Education Centre Jos, Plateau State, since 2001. Uche, who is the founder of the CP Society of Plateau State, has authored a book about her life, titled; “Miss Courageous” to help encourage families of children with CP. In June 2009, she attended a conference in South Africa where people with disabilities from all over Africa learnt to tell the story of their life digitally. 

According to Uche, her objective in life is to encourage families of children with cerebral palsy. Busola, was born August 1, 1981, and holds a Master’s Degree in International Economics and Trade from the prestigious London Metropolitan University. The self-motivated team-player who is keen to take on new challenges had her first degree in Economics from Babcock University, Nigeria, and served in the 2005/2006 set of the National Youth Service programme. She worked briefly with League Concepts and Marketing Ltd, Nigeria, where she served as Research Officer and Associate Editor of the company’s magazine “Agro Pivot” in 2008. She also did Administrative/Voluntary work with various organizations in London, England between 2010 and 2011. 

Busola who has a number of Research works to her credit, has been working with Children Developmental Centre (CDC), Surulere, Lagos, as a Project officer, Since March 2012. “Cerebral palsy is not a disease but a condition. One can achieve whatever he wants in life” these were the remarks of Uchenna and Busola after they received the awards as ‘Benola Ambassador.’ They further thanked the organisation and appealed to the general public to support them. Their words: “We are grateful to Benola, our employers and our families. Cerebral palsy is not a disease but a condition. You can always manage a condition. People should not run from cerebral palsy patients. They should support them.” They lamented that the major issues in the management of CP are stigma and fear. There are 700,000 children with CP in Nigeria, while 3.5 million people, including, parents, siblings and care-givers are directly affected by CP. 

But they observed that most causes are preventable and can be reduced with improved primary health services, while a diverse group of experts are required for proper management of Cerebral Palsy, covering the fields of medicine, care and education. Others who were recognised were: KEMSAD VENTURES,  Friend of Benola (Sponsor); Air Marshal AS Badeh, Chief of Air Staff Nigeria, Friend of Benola; Vice Admiral Mathew Quashie, Chief of Defence Staff, Ghana Armed Forces, Friend of Benola and Dr Uwem Esiet, Co-Founder Action Health Initiative – Friend of Benola (For his selfless and continuous mentoring) Others who were recognised are;Temidayo John Yekini, aka ‘Tiwezi,’ Friend of Benola (For composing, arranging and recording Benola’s theme song; “Heart of the Matter” (A Kingdom Perspective) A Guiding Light Assembly TV programme, Friend of Benola  and Partner and NTA 2 Channel 5 – Friend of Benola (Partner). The rest are; “Soni Irabor Live” An Inspiration 92.3FM Radio Talk Show, Friend of Benola (Partner) and Newswatch Newspaper (Health Desk), Friend of Benola (Partner). Speaking at the occasion, Femi Gbadebo, Founder/CEO, Benola Cerebral Palsy Initiative, explained that the World CP Day is a project that runs yearly, with the theme ‘Change My World in One Minute.’ During this occasion, people are called upon to post ideas capable of making life better for persons living with limitations, Gbadebo said. 

According to him, people with cerebral palsy, their families and supporters, post an idea for something that would change the lives of those living with the condition. They have just one minute to present the idea – in a video or text – and post it on the World CP Day website from mid-July to 31 October, the Benola CP Initiative Founder stressed. Also, innovative events are held around the world to celebrate the occasion and brainstorm ideas for the website. Within the same month, everyone is invited to vote for the ideas that they like the best. A ‘People’s Choice Prize of $500’ is awarded to the person whose idea receives the most votes. In November and December, all the ideas are often reviewed by an international panel, including people with cerebral palsy and their families. Three ideas are shortlisted. The ideas are then shortlisted and the three top winners yearly are sent to inventors who then bring the ideas to life. Ideas are posted from July to October, ‘voted on in October/November and submitted to inventors in January, who then have till June to invent and submit a finished product. Gbadebo further said that the World CP Day is led by a global group of charities and non-profit organisations who support people with cerebral palsy. He added; “committee, with representatives from five countries, provides operational direction. There is also a project manager who administers the project on a day-to-day basis.” 

Meanwhile, Gbadebo has been invited to be part of the first review panel (Panel One), a global group of at least 10 adults with CP and parents, who will filter all the ideas that are posted for World CP Day this year. The Benola CP Initiative CEO explained that the role is a voluntary one, while the review would be done online, over a two-week period. He said: “In an email sent on September 25, Robyn Cummins, Project Manager, World CP Day and an executive with the Cerebral Palsy Alliance, Brookvale, Australia, said the role is a voluntary one and the review would be done online, over a two-week period, starting Wednesday 6  to Tuesday 19 November.” 

During that period, each panellist will be expected to review all ideas based on Impact (that is the number of people with CP around the world whose lives each idea would change). A second panel of World CP Day committee members will then review the feasibility and viability of the top ideas. They will then announce the three shortlisted ideas in January and call for inventors. The entire process will come to a close on July 21, 2014 when the winners will be announced, Gbadebo said. From January to June, inventors, researchers and creators are invited to create a design or prototype for one of the three shortlisted ideas. They compete for a prize pool of $50,000. The winners are announced in July and then the website opens for the next campaign, he added.

This story was published in Newswatch Times on October 17,  2013.


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