Epilepsi i Uganda og Ugandas epilepsiforengs - EPILEPSY SUPPORT ASSOCIATION UGANDA(ESAU) - udfordringer, resultater, vision og mål.

1. EPILEPSY SUPPORTEPILEPSY SUPPORT
ASSOCIATION UGANDAASSOCIATION UGANDA
(ESAU)(ESAU)
esauganda02@gmail.com,esauganda02@gmail.com,
mugarura2012@gmail.commugarura2012@gmail.com
www.epilepsy.org.ugwww.epilepsy.org.ug
Tel:+256Tel:+256 772-450383772-450383
MUGARURA AUGUSTINEMUGARURA AUGUSTINE
NATIONAL DIRECTORNATIONAL DIRECTOR

2. Uganda , Pearl of AfricaUganda , Pearl of Africa
Source of River NileSource of River Nile
Volcanoes /Mountain GorrillasVolcanoes /Mountain Gorrillas
Lake VictoriaLake Victoria
Yoweri MuseveniYoweri Museveni
Mountains of the moon/ RwenzoriMountains of the moon/ Rwenzori
EquatorEquator
Queen Elizabeth Game ParkQueen Elizabeth Game Park
Stephen KiprotichStephen Kiprotich

3. ESAU members meetingESAU members meeting

4. INTRODUCTIONINTRODUCTION
ESAU is an NGO that bringsESAU is an NGO that brings
together people with epilepsy,together people with epilepsy,
their families and other people totheir families and other people to
work towards eliminating thework towards eliminating the
social stigma attached tosocial stigma attached to
epilepsy.epilepsy.

5. Epilepsy in UgandaEpilepsy in Uganda
PWE do not eat or play with aPWE do not eat or play with a
person with epilepsyperson with epilepsy
Most people are treated byMost people are treated by
healers or herbalists. 80% dohealers or herbalists. 80% do
not get any medicationnot get any medication
PWE are unable to start families.PWE are unable to start families.

6. contdcontd
Children with epilepsy not allowed inChildren with epilepsy not allowed in
schoolschool
PWE are treated by pyschiatristsPWE are treated by pyschiatrists
Nearest health facility is 10km awayNearest health facility is 10km away
Average woman in Uganda gets 7Average woman in Uganda gets 7
childrenchildren
Only 30% of women deliver inOnly 30% of women deliver in
hospitalhospital

7. Being togetherBeing together

8. MISSIONMISSION
To become the leadingTo become the leading
organization that empowersorganization that empowers
people with epilepsy topeople with epilepsy to
participate in developmentparticipate in development
processes through advocacy,processes through advocacy,
networking research andnetworking research and
documentation.documentation.

9. VISIONVISION
A Ugandan society in whichA Ugandan society in which
epilepsy is understood andepilepsy is understood and
PWE are treated with dignityPWE are treated with dignity
so that they can exerciseso that they can exercise
their full potential andtheir full potential and
participate in allparticipate in all
developmental processesdevelopmental processes..

10. OBJECTIVESOBJECTIVES
To build an Association in which PWE, theirTo build an Association in which PWE, their
relatives and guardians are empowered andrelatives and guardians are empowered and
participating in advocacy and lobbying for theirparticipating in advocacy and lobbying for their
rightsrights
To empower ESAU branches engage politicians atTo empower ESAU branches engage politicians at
the district and sub-county levels for effectivethe 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 thehealth workers, opinion leaders and the
communitycommunity
To build networks and alliances through whichTo build networks and alliances through which
ESAU can advocate for the rights of epilepsyESAU can advocate for the rights of epilepsy

11. ESAUESAU
10500 members10500 members
Operates in 42 districtsOperates in 42 districts
Has reached more than 50,000Has reached more than 50,000
people with epilepsypeople with epilepsy
Most people expect medicine or otherMost people expect medicine or other
helphelp

12. WHAT WE DOWHAT WE DO
• VolunteersVolunteers
ProvidingProviding
information oninformation on
radioradio
• Director meetingDirector meeting
politicians topoliticians to
Lobby andLobby and
advocate foradvocate for
PWE at districtPWE at district
level.level.

13. WHAT WE DOWHAT WE DO
Fundraising for ESAU activitiesFundraising for ESAU activities
Motivating PWE to consumeMotivating PWE to consume
services by running a Drug Bankservices by running a Drug Bank
Counseling and ReferralCounseling and Referral
Mobilising PWE to makeMobilising PWE to make
branches of ESAUbranches of ESAU

14. WHAT WE DOWHAT WE DO
Training bothTraining both
PWE and otherPWE and other
stakeholdersstakeholders
Building theBuilding the
capacity ofcapacity of
membersmembers
throughthrough
workshopsworkshops

19. ACHIEVEMENTSACHIEVEMENTS
Giving epilepsy a faceGiving epilepsy a face
Mobilised PWE into a well organizedMobilised PWE into a well organized
bodybody
Running all these projects with ourRunning 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 PWEChanging the lives of thousands of PWE
and familiesand families

21. ACHIEVEMENTSACHIEVEMENTS
• AttractingAttracting
funding fromfunding from
corporatescorporates

22. ACHIEVEMENTSACHIEVEMENTS
Membership toMembership to
international agencies likeinternational agencies like
IBEIBE
Full member of NationalFull member of National
Union of disabled personsUnion of disabled persons
of Uganda (NUDIPU)of Uganda (NUDIPU)

23. ACHIEVEMENTSACHIEVEMENTS
ImprovedImproved
relationshiprelationship
betweenbetween
professionalsprofessionals

25. CHALLENGESCHALLENGES
Poverty and powerlessness among PWEPoverty and powerlessness among PWE

27. CHALLENGESCHALLENGES
social stigmasocial stigma
We cover a third of the districtsWe cover a third of the districts
Material expectations from ourMaterial expectations from our
membershipmembership
Poor leadership and advocacyPoor leadership and advocacy
skillsskills
Low funding for ESAU activitiesLow funding for ESAU activities

29. CHALLENGESCHALLENGES
Difficult TransportDifficult Transport

31. FOCUS FOR THE FUTUREFOCUS FOR THE FUTURE
Strengthen the drug bank initiativeStrengthen the drug bank initiative

32. FOCUS FOR THE FUTUREFOCUS FOR THE FUTURE
Involvement of youth with epilepsy in ESAU activitiesInvolvement of youth with epilepsy in ESAU activities

33. FOCUS FOR THE FUTUREFOCUS FOR THE FUTURE
Continue awareness campaignContinue awareness campaign

34. FOCUS FOR THE FUTUREFOCUS FOR THE FUTURE
Sustainability strategySustainability strategy
Improve fundraisingImprove fundraising
Advocacy focus on districtsAdvocacy focus on districts
collaboration with professionalscollaboration with professionals
School epilepsy clubsSchool epilepsy clubs

35. FOCUS FOR THE FUTUREFOCUS FOR THE FUTURE

36. ESAU officeESAU office

37. Reaching communitiesReaching communities

38. Projects for our membersProjects for our members

40. HOWEVER SMALL IT MAY BE,WITHHOWEVER SMALL IT MAY BE,WITH
SUPPORT,IT WILL BE YOUR HOMESUPPORT,IT WILL BE YOUR HOME

41. TAKTAK