SCD RESEARCH: SICKLE CELL FOUNDATION OF NIGERIA

Ongoing Project: To demonstrate that strengthening the immune system can improve the quality of life of Children with SCD

PROJECT ACEMANNAN & SICKLE CELL DISEASE: OUR GOAL

We are examining the role of the aloe vera leaf extract, Acemannan in improving the quality of life and reducing the frequency of painful crises and complications of sickle cell disease patients. In addition, we also aim to establish it as an adjunct in the management of sickle cell disease.

We hoped to collaborate with a centre, Sickle Cell Foundation Nigeria (SCFN).

The goal of this project in SCFN is to recruit 100 patients, from 1 year to 12 years, with sickle cell disease and split them into two groups. While one group receives both the routine drugs (folic acid and palludrine), the other group receives both routine drugs and acemannan.

Dr. Annette Akinsete, the CEO of the Sickle Cell Foundation of Nigeria, announcing the onset of the research collaboration between SCFN and Brain and Body Foundation.

The research approval letter from the Sickle Cell Foundation of Nigeria (SCFN) to Brain and Body Foundation to conduct a study on the Role of Acemmanan – an immune support supplement – in the management of Sickle Cell Disease.

The research activities started on the 28th day of February, 2022. So far, we have recruited 105 participants for the study (50 participants in the routine group and 55 participants in the Acemannan group).

The total budget for the research is $14,271 (that $2,378 to be paid monthly), but this does not include the volunteer stipends and stipends/travel expenses for the Brain and Body Foundation research personnel.

The first meeting between the SCFN staff and board with Mr. Solomon Adomi, Head of Research, BBF on 8th November 2021, to discuss details of the upcoming project.

People in attendance include Mr. Solomon Adomi, our Head of Research, Dr. Annette Akinsete, the Chief Executive Officer of SCFN, and the Nurses representing SCFN in Massey Children’s Hospital and General Hospital, Gbagada. The BBF Head of Research introduced the research and spoke about the project goals and scope. He also explained the forms and questionnaires.

The SCFN staff asked questions and raised concerns about the application of the forms and made some corrections to the forms to fit their patients and to make the process easier.

Images from the research meeting on 8th November, 2021.

Photos of the first set of patients and parents on the first day of the research project on 28th February, 2022.

Mr. Solomon Adomi upon arrival at the SCFN research center in Lagos on the 9th of May, 2022, to observe the work done so far.

The Head of Research, Mr. Solomon Adomi, met with team members of the SFCN who are working on the project. Some of them are in the picture below.

The purpose of the meeting was to observe what has been going on and to record some of the observations and challenges so far.

The BBF Research Head observed some inconsistencies in the filled forms, and the team brainstormed ideas to preserve the integrity of the study, especially as it concerns the data from the patients.

The SCFN team also highlighted some challenges:

  • They are having challenges with follow-up patients. The patients find it hard to come for follow-up because schools are in session. The team fears that this might delay the research and affect the integrity of the results, especially if the participants don’t return when the supplements finish.

  • Many of the participants’ parents/guardians do not consent to the video recording and photo capturing of the research process.

  • They do not have stable weighing scales, stadiometers, and pulse oximeters, and this has affected their productivity.

Mr. Solomon Adomi, Head of Research, along with some executives and officials (from left to right: Michael Ottun (Research Officer, Sunday Onwuka (Office Assitant), Solomon Adomi, and Anthony Babatunde (Programme Coordinator)) of SCFN at the ongoing research project in Lagos, Nigeria.

Mr. Solomon Adomi, interviewing Nurse Esther Ojetunde, the Head Nurse of The Sickle Cell Foundation and one of the Nurses representing the Centre in Massey Children Hospital and General Hospital, Gbagada. Points covered include observations in the research process, some experiences of participants of the programs, and challenges the nurses and Adhoc staff experience in the research.

Mr. Solomon Adomi, describing the research process and supervising the volunteers assisting with the research project in Lagos, Nigeria.

Volunteer Report

Meet Tina Tete, a volunteer with the Brain and Body Foundation, describing the research process at the SCFN research center, Lagos.

BBF Partnerships

Goodwill messages from MannaRelief executives and founders about the sickle cell disease research project, at the Annual Alovea convention in April 2022.

Dr. David Ajibade, our Executive Director, attended the recently concluded Alovea conference where he met with top executives of Manna Relief/Alovea and briefed them on the acemannan research project so far, including the massive help from SCFN’s CEO, Dr. Akinsete.

Sam Caster

Founder, MannaRelief

Linda Caster

Founder, MannaRelief

Courtney Epps

Donor to the Project

Steve Burns

Special Ambassador to Mannarelief

Dr. David Ajibade

Executive Director, Brain and Body Foundation