epilepsy in uganda
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EPILEPSY SUPPORT EPILEPSY SUPPORT ASSOCIATION UGANDAASSOCIATION UGANDA
(ESAU)(ESAU)
[email protected],[email protected],[email protected]@gmail.com
www.epilepsy.org.ugwww.epilepsy.org.ugTel:+256Tel:+256 772-450383 772-450383
MUGARURA AUGUSTINEMUGARURA AUGUSTINENATIONAL DIRECTORNATIONAL DIRECTOR
Uganda , Pearl of AfricaUganda , Pearl of Africa
Source of River NileSource of River NileVolcanoes /Mountain GorrillasVolcanoes /Mountain GorrillasLake VictoriaLake VictoriaYoweri MuseveniYoweri MuseveniMountains of the moon/ RwenzoriMountains of the moon/ RwenzoriEquatorEquatorQueen Elizabeth Game ParkQueen Elizabeth Game ParkStephen KiprotichStephen Kiprotich
ESAU members meetingESAU members meeting
INTRODUCTIONINTRODUCTIONESAU is an NGO that brings ESAU is an NGO that brings together people with epilepsy, together people with epilepsy, their families and other people to their families and other people to work towards eliminating the work towards eliminating the social stigma attached to social stigma attached to epilepsy.epilepsy.
Epilepsy in UgandaEpilepsy in UgandaPWE do not eat or play with a PWE do not eat or play with a person with epilepsyperson with epilepsyMost people are treated by Most people are treated by healers or herbalists. 80% do healers or herbalists. 80% do not get any medicationnot get any medicationPWE are unable to start families.PWE are unable to start families.
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Children with epilepsy not allowed in Children with epilepsy not allowed in schoolschoolPWE are treated by pyschiatristsPWE are treated by pyschiatristsNearest health facility is 10km awayNearest health facility is 10km awayAverage woman in Uganda gets 7 Average woman in Uganda gets 7 childrenchildrenOnly 30% of women deliver in Only 30% of women deliver in hospitalhospital
Being togetherBeing together
MISSIONMISSION
To become the leading To become the leading organization that empowers organization that empowers people with epilepsy to people with epilepsy to participate in development participate in development processes through advocacy, processes through advocacy, networking research and networking research and documentation.documentation.
VISIONVISION
A Ugandan society in which A Ugandan society in which epilepsy is understood and epilepsy is understood and PWE are treated with dignity PWE are treated with dignity so that they can exercise so that they can exercise their full potential and their full potential and participate in all participate in all developmental processesdevelopmental processes. .
OBJECTIVESOBJECTIVES
To build an Association in which PWE, their To build an Association in which PWE, their relatives and guardians are empowered and relatives and guardians are empowered and participating in advocacy and lobbying for their participating in advocacy and lobbying for their rightsrights
To empower ESAU branches engage politicians at To empower ESAU branches engage politicians at the district and sub-county levels for effective the district and sub-county levels for effective service delivery.service delivery.
To create awareness among PWE, their relatives, To create awareness among PWE, their relatives, health workers, opinion leaders and the health workers, opinion leaders and the communitycommunityTo build networks and alliances through which To build networks and alliances through which ESAU can advocate for the rights of epilepsyESAU can advocate for the rights of epilepsy
ESAUESAU
10500 members10500 membersOperates in 42 districtsOperates in 42 districtsHas reached more than 50,000 Has reached more than 50,000 people with epilepsypeople with epilepsyMost people expect medicine or other Most people expect medicine or other helphelp
WHAT WE DOWHAT WE DO
• Volunteers Volunteers Providing Providing information on information on radioradio
• Director meeting Director meeting politicians to politicians to Lobby and Lobby and advocate for advocate for PWE at district PWE at district level.level.
WHAT WE DOWHAT WE DO
Fundraising for ESAU activitiesFundraising for ESAU activitiesMotivating PWE to consume Motivating PWE to consume services by running a Drug Bankservices by running a Drug BankCounseling and ReferralCounseling and ReferralMobilising PWE to make Mobilising PWE to make branches of ESAUbranches of ESAU
WHAT WE DOWHAT WE DO
Training both Training both PWE and other PWE and other stakeholdersstakeholders
Building the Building the capacity of capacity of members members through through workshopsworkshops
ACHIEVEMENTSACHIEVEMENTS
Giving epilepsy a faceGiving epilepsy a face
Mobilised PWE into a well organized Mobilised PWE into a well organized bodybodyRunning all these projects with our Running all these projects with our friends and partners for 15yearsfriends and partners for 15years
Attracting new partnersAttracting new partners
Changing the lives of thousands of PWE Changing the lives of thousands of PWE and familiesand families
ACHIEVEMENTSACHIEVEMENTS
• Attracting Attracting funding from funding from corporatescorporates
ACHIEVEMENTSACHIEVEMENTS
Membership to Membership to international agencies like international agencies like IBEIBEFull member of National Full member of National Union of disabled persons Union of disabled persons of Uganda (NUDIPU)of Uganda (NUDIPU)
ACHIEVEMENTSACHIEVEMENTS
Improved Improved relationship relationship between between professionalsprofessionals
CHALLENGESCHALLENGESPoverty and powerlessness among PWEPoverty and powerlessness among PWE
CHALLENGESCHALLENGES
social stigma social stigma We cover a third of the districtsWe cover a third of the districtsMaterial expectations from our Material expectations from our membershipmembershipPoor leadership and advocacy Poor leadership and advocacy skillsskillsLow funding for ESAU activitiesLow funding for ESAU activities
CHALLENGESCHALLENGESDifficult Transport Difficult Transport
FOCUS FOR THE FUTUREFOCUS FOR THE FUTUREStrengthen the drug bank initiativeStrengthen the drug bank initiative
FOCUS FOR THE FUTUREFOCUS FOR THE FUTUREInvolvement of youth with epilepsy in ESAU activitiesInvolvement of youth with epilepsy in ESAU activities
FOCUS FOR THE FUTUREFOCUS FOR THE FUTUREContinue awareness campaignContinue awareness campaign
FOCUS FOR THE FUTUREFOCUS FOR THE FUTURE
Sustainability strategy Sustainability strategy
Improve fundraising Improve fundraising
Advocacy focus on districtsAdvocacy focus on districts
collaboration with professionalscollaboration with professionals
School epilepsy clubsSchool epilepsy clubsworkshopsworkshops
FOCUS FOR THE FUTUREFOCUS FOR THE FUTURE
ESAU officeESAU office
Reaching communitiesReaching communities
Projects for our membersProjects for our members
HOWEVER SMALL IT MAY BE,WITH HOWEVER SMALL IT MAY BE,WITH SUPPORT,IT WILL BE YOUR HOMESUPPORT,IT WILL BE YOUR HOME
TAKTAK