Sickle Cell Screening reaches 2,215 children and increasing!

The UK and Nigeria teams were able to exchange information via their usual typed skype meeting.

John Dada, although unable to attend personally this week, emailed us with the following exciting update about Fantsuam Foundation’s real contribution in combating Sickle Cell Disease. As part of the Cohort Pilot Study he gave us the following latest statistics: So far he has successfully managed to screen 2,215 children for Sickle Cell disease. In addition to those screened on the UN Sickle Cell Awareness Day in June and those screened in Gwantu, an additional 630 children have recently been screened in Manchok and the team plans to be in Attakar on Thursday 15th and in Kagoro today. John’s target is to screen 6,000 children. Photos of these various screenings are hopefully ‘in the pipeline’ to the UK.

Wednesday Meeting

John sent his apologies for this week’s online meeting - but had a very good excuse! For as the UK and Nigeria teams staged their weekly virtual get-together, he was 120 kms away from Kafanchan screening local children for potentially deadly Sickle Cell Disease. However this didn’t stop John contributing to the meeting as he sent an email which gave his input for each of the topics on the agenda.

Sickle Cell Cohort Study

Fantsuam was selected to participate in the first SC Cohort study in Nigeria.

A sustainable Pilot Scheme

This project aims to improve survival and quality of life for children with Sickle Cell Disease (SCD) by instituting early infant diagnosis and establishing standardised care that is sustainable through capacity building of service provision in a comprehensive manner from laboratory diagnosis, prevention, treatment and rehabilitation.

The project will be implemented in Nigeria, the country with the highest disease prevalence, with the help of UK-based doctors, largely Nigerian migrants. The issue is particularly relevant in the targeted country in that the majority of SCD patients in the UK arrive from Nigeria and West Africa and the high mortality in Nigeria is a deterrent for those patients and families returning to Nigeria.

Support for the visually impaired in rural Nigeria

Here is some additional information about Fantsuam Academy and its initiative to use JAWS for the blind and visually impaired in its community.(As promised in my previous blog)
This email update was sent to Dadamac UK from Cicely, a VSO at Fantsuam Foundation (FF), and has been edited to remove names. For photos click here.

"Our JAWS experts, are safely back in Jos. I have thanked them for the time they have given introducing  Fantsuam and its instructors to JAWS as part of the programme to make Fantsuam Academy courses available to the sight-impaired with suport from VSO and ANWAB/Freedom Scientific ( developers of JAWS.)

Report of the visit

Seven Fantsuam Foundation Academy instructors and two blind members of the community attended a JAWS introductory session over two days, held in the Community Community Centre (CCC) on 6 and 7 April.

The sessions were led by two sight impaired students currently studying Special Education at the University of Jos.  One of the students had taught himself JAWS after becoming blind at the age of 17 and has written a 60 hour JAWS curriculum including student books and teachers' guide. The other has been partially sighted since birth.

As well as demonstrating JAWS, FF instructors were encouraged to 'practice' teaching with the two blind members of the community, both of whom are familiar with typewriters but have not used computers before.

At the forefront of Education for Children and the Visually Impaired

This week's UK-Nigeria meeting on Wednesday proved so informative that I have had to briefly summarise the topics that were covered with the intention of writing additional blogs giving more detail.

The Nigerian team was reduced in numbers as two exciting developments were underway.

Firstly, there was the anticipated arrival of Reuben Buhari, a journalist with This Day newspaper. Reuben plans to do an update about the work of Fantsuam Foundation (FF) , in particular looking at the overall impact of FF on its host communities.

Secondly, there some of the Nigerian team were involved in a JAWS training session for the Academy instructors to show how to make computers accessible to the blind. This is a fantastic initiative which will make the Fantsuam Academy courses accessible to the sight-impaired with support from VSO and ANWAB/Freedom Scientific (developers of JAWS). I understand from Wikipaedia that JAWS (an acronym for Job Access With Speech) is " a screen reader, a software program for visually impaired users, produced by the Blind and Low Vision Group at Freedom Scientific. Its purpose is to make personal computers using Microsoft Windows accessible to blind and visually impaired users".

Chollom informed us that they had just downloaded the JAWS software which will be installed on the newly arrived Inveneo computers.
John summed up the JAWS initiative perfectly when he told us: "that is a project that enables FF to address one its mission of reaching the un-served population of people with disabilities"

New Arrivals at Fantsuam!

Regular followers of our Wednesday meetings will realise that we can never predict exactly what will unfold. Predictably, this week was no exception.

Despite travelling, John was fully apprised of events at Fantsuam Foundation and joined the Skype meeting to fill us in. His first input was to let the UK team know that no-one else from Fantsuam would be online - because they were in the middle of some exciting developments.

These centred around a huge effort to get their new Community Communication Centre up and running. New equipment ordered from the US had just arrived, so workers were busying themselves with myriad installations, challenges and teething problems as they set up technology for this innovative project.

We were told that another reason the Fantsuam team could not attend was that Demas was attending a water and sanitation workshop in Abuja, and Comfort a DFID meeting in Abuja.


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