On October 10, 2020, the Femi Pinto Sickle Cell Fund (FPSCF) will conduct a 5k Walk around the world to raise awareness about Sickle Cell Disorder. Who was Femi Pinto – and why is the FPSCF doing this? Sickle Cell News speaks with Mrs. Nike Aremu, co-founder, FPSCF.
Who established the Femi Pinto Sickle Cell Fund? What are their objectives in doing this?
The Femi Pinto Sickle Cell Fund (FPSCF) was established by Nike Aremu and Ronke Akinbode, who lost their sister, Femi Aderibigbe to Sickle Cell disease in 2018. The mission of the Femi Pinto Sickle Cell Fund is to provide medical, social, educational, and economic support for children with sickle cell disease and their families in Nigeria. We are in a strong partnership with the Sickle Cell Foundation (Nigeria) to achieve these goals.
What are the achievements of FPSCF far?
Let me enumerate some of our achievements here:
The Femi Pinto Sickle Cell Club – a collaboration with the Sickle Cell Foundation (Nigeria), was created primarily as Patient/Parent Advocacy & Support group based in Ondo, Ondo State. We currently have ten children with SCD living in abject poverty with little or no medical assistance as members. The group meets monthly in Femi’s Alma Mater, St Monica’s Grammar School, Ondo under the guidance of a trained SCD genetic counsellor. At this meeting, they receive their routine medicines and food items. This initiative is funded solely by the FPSCF.
Adopt a Patient Project – This project, a collaboration with the Sickle Cell Foundation of Nigeria, identifies and assists patients with their medical needs and treatment. Each patient receives free monthly treatment which includes routine daily medications, analgesics as needed and routine blood tests.
Annual Children with Sickle Cell holiday party – This is hosted annually by the Sickle Cell Foundation of Nigeria and gives the patients a fun way to enjoy the holiday season. The FPSCF is honored to be able to make a sizeable donation to help offset the costs of this event.
On October 10th, participants will be able to run, walk or cycle anywhere, anytime. They may opt to run as a team whilst following the existing social distancing rules and all Covid-19 mandates. Similar to 2019, we plan to have participants in the United Kingdom, United States of America and NigeriaNike Aremu
How is your organization funded? Where is your area of influence? Do you work outside North America?
We are a registered in the USA as a Domestic Non-Profit organization. All our funding comes from donations from individuals and corporate sponsors.
Yes – we work in Nigeria
What are the highlights of your upcoming 5Km Walk/Cycle/Run?
Our slogan this year – is ‘The Race must go On’. We are determined to continue our work to raise funds despite the pandemic so we are going virtual. On October 10th, participants will be able to run, walk or cycle anywhere, anytime. They may opt to run as a team whilst following the existing social distancing rules and all Covid-19 mandates. Similar to 2019, we plan to have participants in the United Kingdom, United States of America and Nigeria.
TEAM PINTO has one of its slogans stating ‘STOMP OUT SICKLE CELL’. How do you intend to achieve this? Are you placing any emphasis on sickle cell trait awareness as a precursor to this?
We are hoping that by lending our voice to projects and issues that support Sickle Cell, we are contributing in our way to raising awareness and education about this disease.
You are about to launch Ondo Sickle Cell Club – why Ondo – and not elsewhere?
Femi ‘Pinto’ Aderibigbe is from the Okedasa area of Ondo town. Fun fact – their mother was born and raised at No 7 Okedasa while their dad was born and raised at No 24 Okedasa. They both attended St Monica’s Grammar School Ondo and also Federal School of Arts and Science Ondo. Despite Femi’s struggle with Sickle Cell, she thrived and had very fond memories of St Monica’s Grammar School. She was a patient of the late Dr. Raphael Olamide Akinsete and attributed her health and ability to survive in boarding school to Dr. Akinsete’s care and commitment to her health. Femi’s sisters – Nike and Ronke formed the Femi Pinto Sickle Cell Fund to preserve the Femi’s memory and to help Sickle Cell Patients – specifically from St Monica’s Grammar School Ondo and Ondo town in general.
This is about the first sickle cell club in the state. How will this Ondo Sickle Cell Club help to improve SCD awareness in Ondo State and Nigeria in general?
During the initial stages of setting up the club, I personally met and interviewed parents of some of the children suffering from Sickle Cell. It was heartbreaking to see the lack of education and awareness these parents had. It is my prayer and goal that this initiative will not only help the children with their medical needs but will educate and empower the parents and community as a whole.