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Invitation to 2010 Sickle Cell Celebration - 100 years since it was named and understood. June 15, 2010

Sc_day_invitation

Invitation from
John Dada PhD, MPH, RN, DipHE
Executive Director
Fantsuam Foundation
Kafanchan, Nigeria
<http://www.fantsuam.org> 

Related press release:

UN Sickle Cell Awareness Day Saturday June 19th 2010
One man making a diffference in rural Nigeria

Event in rural North Central Nigeria in the words of local organiser John Dada

"Fantsuam Foundation is laying on a local event to mark the day. It will raise awareness, provide free screening for 500 children under 5 years of age, and distribute folic acid and multi-vitamins. This is the first time ever for people around Kafanchan to receive free screening for sickle cell disease. Fantsuam Foundation has recruited and is training 50 volunteers to help on the day. They can screen 500, but expect up to 1000 to come forward, so there will be major crowd control challenges. Pin pricks on heels will be used to collect blood for lab analysis. This is a unique opportunity to raise awareness about sickle cell disease and screen a large number of children. The testing will be done at the Nigerian government hospital at Kafanchan to help know the size of the problem. It is part of a cohort study and we hope the funders of the study will take up some of the bills for this special day. We also hope to encourage the Nigerian government to support our work to establish a sickle cell clinic in Kafanchan, as far as we know this is the only event of its type in this region in the northern part of Nigeria."

Taken from Skype chats between John Dada johndada@fantsuam.org in Nigeria and Pamela McLean in UK pamela.mclean@dadamac.net and Nikki Fishman in UK nicola.fishman@dadamac.net on June 9th and 10th 2010. John Dada and Pamela McLean collaborate under the name "Dadamac"

"Putting your money where your mouth is"

John is so convinced of the importance of this day that he has borrowed money personally to cover many of the costs, with no clear idea of who else will step in afterwards to help him to cover the costs. He wants to take advantage of Sickle Cell Awareness Day to make a big noise so that the Nigerian Government may support and even replicate his efforts. He wants to create momentum so that after the event he is not left with high local expectations and no resources to help them. (Sadly this is often his experience. It is comparatively easy to get dignitaries to praise a project at an opening ceremony. It is much harder to find people and organisations who are willing to follow through when it comes to practical action and finding the necessary funds). John hopes his gamble on investing in a high profile local awareness day will pay off in external support.

Present provision - with photos on Flickr

John is already taking steps to tackle the awful and sadly common problem of sickle cell. He is on a shoestring trying to set up local support. Already he has been holding monthly sickle cell support groups with over 100 attending and numbers growing.

What is Sickle Cell Disease

Sickle Cell Disease is an agonising blood condition which affects one in every four West Africans. While it is generally controlled in the western world, a lack of medication and funding in Africa means that it causes intense suffering there and often leads to death. It takes its name from the abnormally "sickle" shaped blood cells found in sufferers. Normally shaped bloods cells flow freely, but malformed "sickle" shaped blood cells cause blockages. The blockages can be intensely painful. Depending where the blockages occur they can cause irreversible organ damage of even death. 

The United Nations considers the situation so serious that, in 2008, its General Assembly adopted a resolution recognising Sickle Cell as a public health problem. It also established an official Global Awareness Day to take place each year on June 19th.

More about John Dada, Fantsuam Foundation, and this event

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