UFAR is a nonprofit charitable organization fighting Riverblindness. They are raising money on CaringCrowd. Recently I caught up with Charles C. Phillips to learn more about the effort; here’s what he told me:
What is the social benefit you hope to achieve with or through your crowdfunding campaign?
Imagine a child living in a village so remote he/she has no access to basic medical care, even communication with the outside world beyond the village is very difficult. Imagine many in the village are already blind and totally dependent upon children to assist with almost all of their daily needs for survival. Many adults in his/her family and other families in the village endure the constant misery of unrelenting itching , teary eyes, disfiguring, visual impairment and eventually blindness, all characteristic of onchocerciasis, also commonly known as Riverblindness. Children, 5 years of age or younger, not yet infected by the parasitic worm causing the disease that is transmitted through the bites of small blackflies living and breeding along rivers and creeks, they become full-time caretakers for their blind adult relatives. With this consuming daily engagement, these children have no time left for schooling, making them doomed for illiteracy and perpetual poverty. Once the children are old enough to start doing the types of daily chores adults do along infested rivers with onchocerciasis-carrying tiny blackflies, they will get the disease and without help, they also will eventually be blind.
The good news is that Mectizan, the only effective and safe drug approved for Riverblindness can be administered as a single annual oral dose on a community-based mass treatment setting, can indeed interrupt transmission of the parasite and achieve elimination of the disease. Administered for 10 consecutive years in endemic areas with recommended treatment coverage rates and the disease can be eliminated. The drug is free from its manufacturer who has pledged to continue providing it free as long as it’s needed for worldwide elimination of Riverblindness.
How much money are you hoping to raise and why? How much have you raised so far?
Our overall fundraising goal for 2017 is $70,000, of that $20,000 through CaringCrowd. We have raised approximately $30,000 overall and approximately $12,000 through CaringCrowd so far. These funds will be used to overcome the major hurdle to the administration of Mectizan, which is the distribution of the drug to the millions of people who need it, in order to achieve and maintain recommended treatment rates for therapeutic and geographic coverage of 80% and 100%, respectively. The majority of those needing treatment live in remote villages poorly accessible or inaccessible by motor vehicles.
The high efficacy and safety profiles of Mectizan and its convenience for a single annual oral dose regimen make it well suited for large-scale mass distribution programs in remote communities by selected individuals in rural communities trained and empowered to play a major role in managing their own health and well-being.
These Community workers (CWs) or community drug distributors (CDDs) are the backbone of the community-directed and community-based strategy for mass distribution of Mectizan for onchocerciasis and of several other drugs for other neglected tropical diseases (NTDs), including lymphatic filariasis (LF), schistosomiasis (SCT), soil-transmitted helminths (STH) and trachoma (T). They are selected from within their community to lead the annual drug distribution campaign for the benefice of the community. Traditionally, CWs work as unpaid volunteers, receiving only small compensations from the people they serve. The increasing presence in recent years of other public health programs such as those for HIV/AIDS and malaria that provide relatively large incentives to their community workers has resulted in some instances in significant attrition among onchocerciasis CWs for the attractive paying or rewarding jobs. The new “Empower remote African villages to eliminate Riverblindness” approach was conceived as a way of reducing the attrition rates among our volunteers as well as to help the country and communities play a leadership role and appropriate the project as their own, for the goodness of the community by providing small incentives to the community workers.
Whom are you trying to help with your project and why?
Within the Democratic Republic of Congo we are working in more geographic regions. In addition to Katanga province we have expanded our work to the provinces of Maniema, Orientale, and Kasai Orientale.
The population we are responsible for treating has grown from just over 3 million in 2014 to over 6.2 million in 2017. We must train more than twice as many Community Distribution Workers – from 20,895 in 2014 to over 45,000 in 2017!
While the United Front Against Riverblindness (UFAR) is not changing its name, we are no longer solely focused on Riverblindness and we are not focused only on the control but the complete elimination of Riverblindness from the Democratic Republic of Congo (DRC). We are now additionally tackling other NTDs (neglected tropical diseases): including lymphatic filariasis (LF), schistosomiasis (SCT), soil-transmitted helminths (STH) and trachoma (T).
What rewards, if any, are you offering to your supporters?
Donations based – no rewards, equity or repayment
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