blog, Field Reports

A Day in the Field: Nodding Syndrome Centre Research

By Emma Papin

On the 18th of October, the HCU team, equipped with donations and support, drove out to  the Omoro district for their first visit to the Odek Centre for children suffering from Nodding Syndrome (NS). With the aim of learning more about the lives of the children, the condition of NS, the Centre,  and ways HCU can help, our team went with open arms and an open mind.

The Centre faces the challenges of providing 68 children with nutritious meals and essential medical and therapeutic care.  If the center closes, the children would be turned away, returning to their homes where they are unlikely to receive care and nutritious meals. Due to the vastly ambiguous nature of the disease parents are unaware of how to care for the children, thus resulting in the children often being tied up or abandoned on the streets. From speaking with caretakers at the Centre, it was made clear to us that many of the children suffering from NS are neglected and abandoned by their family, as they struggle to deal with the condition.

Help us continue caring for these children by donating or sharing, here.



Without crucial emergency funding provided by HCU, the Centre would have closed in October. This funding crisis initially started last year, when foreign NGO Hope for Humans (no relation to Hope Center Uganda), who founded the center, was unable to financially support the project any longer. Without their support, the local government began supporting a minimum of the Centre’s operating and medical management costs: However, as of October 2018, they too have pulled out funding .

Aligning with HCU’s mission of empowering the lives of marginalized youth through arts education and female empowerment, we brought our Girl Power Gulu and Wer Waa Arts programs to the Centre.

The team came equipped with supplies of soap, disposable pads and underwear for the girls living with NS. As a result of the serious impacts of NS, also dependent on the severity of each case, the girls display severe learning difficulties and therefore education and menstrual care is provided to and by the caretakers.

Our music therapy sessions were the most impactful form of therapy that the caretakers at the center have seen so far. Children who seem in continuous discomfort or unable to speak immediately light up when they hear the sound of drums and music, attempting to speak and dance along.

These programs  are just the beginning of the ways HCU will change the lives of these children. Both the boys and girls of Odek are faced with many other important needs. Many of the children are without shoes, clothing/uniform and mosquito nets. There are not enough beds in the center for all the affected children to sleep there. Medical supplies are always at a shortage, and many children are malnourished due to a government-provided meal of only posho (maize meal).

Beyond the children themselves, we will provide the staff with capacity-building workshops to teach them how to better advocate for funding for the center both from local government and international NGO’s. We will teach the staff to work with the children on an Agro-business model, to provide vegetables for nutritious meals at the center as well as crops they can take to market and sell to create a sustainable source of revenue for the center. Beyond the center’s children and staff, HCU will take a rights-based approach to educating the surrounding community on ways to cope with NS, to remove the taboo around the disease and teach proper care tactics, through community meetings and an awareness building “NS Awareness Day.”

Please join us on this mission to drastically improve the lives of these children and their community! You can read more and donate or share our story: