a world without leprosy

A World Without Leprosy1st National Workshop of the People Affected by

Leprosy Organizations in the Philippines

Sasakawa Memorial Health Foundation through the initiative of

A Project funded by

in cooperation with the

Dr. Arturo C. Cunanan, Jr. Culion Sanitarium

National Leprosy Control Program of the Department of Health and

the Culion Foundation, Inc.

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Table of Contents

Foreword

Glossary Of Terms

Executive Summary

Workshop Outcome

Background

Introduction

Process & Methodology

Day 1: Where We Are Now?

Brief Walk-Thru Of The Day

Opening Rites

Workshop Proper

Affirming Assessment Findings

Future Vision: Dream Casting Solidarity Night

Solidarity Night

Day 2: Where Do We Want to Go?

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Working Together for an Inclusive Society3 | PAGE


Remembering Day 1

Plenary Session

Workshop Proper

Looking Ahead: Planning & Strategic Formulation

Identifying Strategic Thrust

Solidarity Night: Knowledge Sharing

Day 3: How Do We Get There?


Remembering Day 2

Plenary Session

Workshop Proper

Pathways To Collaboration & Partnerships

National Leadership Formation

Closing Rites

Facilitator Observations, Insights, And Recommendation

Activity Photos

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Annexes

Annex A. Environmental Scanning

Annex B. List of Participants

Annex C. Schedule of Activities

Annex D. Organizing Team

Annex E Assessment Of The Organizations Of People Affected By Leprosy In The Philippines

Annex F. Guest Speaker Presentations

Annex G. POs Presentation

see attached CD

see attached CD

see attached CD


Foreword

Leprosy control or leprosy elimination is not just about treating the bacteria,

Mycobacterium leprae, since leprosy is far more than a medical condition or public

health concern. The effect of stigma & discrimination associated with it is far more

detrimental on the person affected by leprosy than the disease itself even to extend to

his/her family. More often the people affected by leprosy are perceived as clients and

recipients at the receiving end of clinical care”, rather than potential strong partners

endowed with intelligence, capacity, emotions, and will and more so of having rights as

any other human being.

Since leprosy’s nature is made complex (“challenging”) specially the social dimensions

(Human Face) of the disease, it is important then to take into consideration the

perspectives of the very people who are affected by it. By allowing these people to have

a voice and an opportunity to be heard, and their rights to chart their own future should

be respected. Such an understanding will pave way towards a more comprehensive,

sustainable and holistic approach to improving the quality of life of People Affected by

Leprosy.

The documentation of “Coming Together: A Beginning” is an attempt to immortalize

the 1st initiatives of the People Affected by Leprosy and its association all throughout

the Philippines to be visible and significant in matters which concerns their own

future. They are no longer passive recipients of clinical care on the receiving end.

Instead, their coming together in the 1st National Workshop of the People Affected by

Leprosy Organizations in the Philippines is a declaration that they do have a capacity

to determine their own future and be a potent partner in community building and in

leprosy services.

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However, their coming together to organize as a national coalition wouldn’t be possible

without the recognition that it is a multi-sectoral, and multi-disciplinary concern, that

leprosy is everybody’s business and in coming together, staying together and working

together as a group is essential and beneficial to everyone. The awareness of other

stakeholders to become catalyst and a vehicle of the birthing of a national coalition

is equally important to the whole process of the true empowerment of the people

affected by leprosy.

This documentation materials then shall serve as witness how these came about; a

witness of their journey to come together as once. A statement exemplifying, “Together

has Power!” It is a Philippine Experience worth sharing to the rest of the world.

However this is just a beginning staying together and working together to attain the

shared goals and objectives as a network needs the guidance and nurturing of partners

NGOs and government agencies working together towards a world without leprosy and

its complications. The organizing committee acknowledged with much appreciation

the generous funding support of the Sasakawa Memorial Health Foundation (SMHF)

making possible the coming together of the people affected by leprosy organizations in

the Philippines and other stakeholders.

Dr. Arturo Cunanan, Jr. Culion Sanitarium


Glossary of Terms

CBR – Community Based Rehabilitation

DSWD – Department of Social Welfare and Development

PAL – Person Affected by Leprosy

PGH – Philippine General Hospital

PLM – Philippine Leprosy Mission

DOH – Department of Health

DOLE – Department of Labor & Employment

MDT – Multi-Drug Therapy

NCDA – National Council on Disability Affairs

CHR – Commission on Human Rights

WHO – World Health Organization

GA/GO – Government Agency/ Government Organization

NGO – Non-Government Organization

PO – People’s Organization

PWD – Person with Disability

IEC – Information Education Campaign

TNF – The Nippon Foundation

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Pursue the formation of a national coalition of

organizations of People Affected by Leprosy;

Allow the organizations to develop their

priorities, work out their solutions to their

identified issues and concerns;

The Government and its agencies together with

the NGOs should give their full support to the

realization of the coalition building effort.

The introduction of the multi-drug therapy or MDT in the 80s brought about a dramatic decrease of leprosy cases.

Today, leprosy in the Philippines is considered “eliminated” as a public health problem. However, some challenges:

economic deprivation, social discrimination, stigma, and social exclusion remain to be concerns which need to be

addressed.

Distributed throughout the eight (8) leprosy sanitaria are groups

of people affected by leprosy. These people banded together

and formed themselves into formal and informal organizations.

Many of these organizations have been around for years already.

Most of these groups are recognized and have gained the

support of the DOH sanitaria, NGOs, and religious groups.

From 2010 to March 2011, an assessment of these organizations

was conducted to validate their existence and functionalities. As

a result of this assessment, the following recommendations were

acted upon on this workshop:

Executive Summary


Taking the foregoing as the basis for the 1st National Coalition

Building Workshop of People Affected by Leprosy, participants

of the gathering included the nineteen (19) POs (nationwide);

eight (8) Government Agencies led by the Department of

Health (DOH) through the National Leprosy Control Program &

eight (8) leprosy Sanitaria; and, thirteen (13) Non-Government

Organizations (Philippine Leprosy Mission, Sorok Uni Foundation,

Inc. including International Development Institutions: Sasakawa

Memorial Health Foundation, World Health Organization,

Novartis Foundation, HANDA of China, and Rotary International.

Speakers of the workshop included Commissioner Cecilia

Rachel Quisimbing (CHR), USEC Teodoro Herbosa (Department

of Health), Dr. Arturo Cunanan, Jr. (Culion Sanitarium) , Dr.

Clemente Almonte (Sulu Sanitarium), Dr. Belen Dofitas (PLM),

Dr. Gemma Cabanos (ALM), Mr. Rey Coloma (TLMI), Mr. Mateo

Lee (NCDA), Mr. Adi Yosep (TNF-HDP), Dr. Michael Chen (HANDA),

Ms. Hoshino Nao (SMHF), Dr. Katsunori Osuga (WHO-WPRO).

The presentations of the speakers focused on the following

topics:

Stigma & Discrimination

Role of Government Agencies & NGOs in the promotion of the dignity & rights of the People Affected by Leprosy

Human Rights approach to Advocacy

Empowerment & Reintegration

Knowledge Sharing of Best Practices & Experiences in managing POs by the NGOs, and the Sanitaria.

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Workshop Outcome

Their coming together is not just a process, but also an outcome

of the many initiatives done in the past by many Government,

Non-Government Organizations, People’s Organizations, and

individuals whose passion in life is to advocate for the welfare

of these people’s group. There were 19 People’s Organizations, 8

Government Institutions, and 13 Non-Government Organizations

represented in this gathering.

The days would start with plenary sessions, then a workshop,

and then end with fellowships and knowledge sharing

activities. Guest speakers are from various national government

organizations, international development agencies, and private

foundations whose work is with People’s Affected with Leprosy.

Topics such as Human Rights, Social Stigma & Discrimination,

and Empowerment & Reintegration were discussed. The

workshops were all geared towards ensuring the central subject

of the whole conversation were given a chance to articulate

their aspirations for their own welfare. Thus Vision Casting is the

beginning point of the whole journey. After all, a people without

a vision perish.

A three-day national coalition building workshop was held from 7-9 March 2012 at the Bay View Park Hotel,

Manila, Philippines for People Affected by Leprosy through the initiative of Dr. Arturo C. Cunanan, Jr. of Culion

Sanitarium & General Hospital in collaboration with the DOH-NLCP and the generous support of the Sasakawa

Memorial Health Foundation and the Culion Foundation, Inc. This is the first step of the journey for collaboration

and cooperation in search for the realization of a better community and quality of life for the People Affected by

Leprosy.

Together has Power!


As a result of the 3-day coalition building workshop, 6 significant outcomes emerged as follows:

Affirmation of Assessment FindingsThe findings of the assessment reveal that there is a need for organized and systematic

cooperation between & among the existing and functioning POs of People Affected

by Leprosy. The envisioned coalition should be national in character. This gathering

together with the identified stakeholders such as public health specialists, medical

practitioners, duty bearers of healthcare services and social workers in Leprosy Work

including government agencies (i.e. DOLE, DSWD) affirmed this expressed need in the

aspects of:

Establishing collaboration & partnerships through Coalition Building.

Realizing Empowerment between & among individuals, People Group, and institutions.

Enhancing Care & Welfare for People Affected by Leprosy and their families.

Promotion of Core Values: Helping Others, Gratitude, and Unconditional love.

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Future Vision: Dream CastingThe stakeholders were divided into three groups: the POs, GAs, and the NGOs. They were

asked to visualize through any pictorial representation regarding their vision. The result

of their drawings reveal the following aspirations for the People Affected by Leprosy:

Empowered to live a life of freedom, dignity, and

self-determination. Equally important for them

is to be recognized as partners of development to

meaningfully participate in community life.

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Identification of Strategic ThrustTo operationalize their vision, six (6) thrusts were identified:

Institutional Development

To establish a strong coalition duly recognized by the Government and other institutions.

Policy Advocacy

To organize a group that shall lobby for equal opportunity and policy advocacy regarding the rights of People Affected by Leprosy.

Partnership, Networking & Linkaging

A coalition with a strong and effective relationships with the different government agencies and NGO who are working towards policy development & advocacy protecting the rights and welfare of People Affected by Leprosy. The thrust of Partnership, Networking and Linkaging is to strive for economic development of People Affected by Leprosy and total stigma elimination.

Economic Freedom & Development

To create products and services which can provide work for People Affected by Leprosy & a venue for livelihood opportunities.

Strengthening & Unifying POs

Strengthened relationships among the coalition members and all other enabling agencies (individuals, organizations, and entities which can be catalysts for its success).

Total Elimination of Stigma & Discrimination

Enhanced and sustained public awareness through advocacy with the cooperation of various entities: government organizations (GOs), non-government organizations (NGOs), Department of Health (DOH), and others.

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Pathways to Collaboration & Partnerships

The identified strategic thrust by the People Affected by Leprosy was presented to the

stakeholders in Leprosy Work (GAs & NGOs). The stakeholders then crafted their support

to the initiatives of the coalition in the following manner:

Formation of Organizational Leadership for a National CoalitionA regional grouping was formed among the representatives of the People Affected by

Leprosy associations. From each region representative coming from Luzon, Visayas and

Mindanao 12 Board Members were elected to compose the board of national coalition.

A 13th Board Member was designated by the elected officers to fulfill certain legal

requirements.

The very 1st National Coalition Board Meeting was held at the Bay View Park Hotel,

Philippines in 9 March 2012. The meeting accomplished the following:

Election of Key Officers:

Chairman Hilarion Guia,

Vice-Chairman Francisco Onde & Secretary Ittihaya Quisai;

Appointment of the 13th Board Member, Mr. Celerino Estrella;

Briefing of SMHF representative, Ms. Hoshino Nao, regarding

SMHF experiences with other countries as well as interest of

the SMHF in the bright future of the newly formed coalition;

Acceptance of Culion Foundation, Inc. as the Secretariat;

The coalition Board requested for technical assistance in

crafting their Strategic Plan from the Secretariat & the

organizing committee.

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Comprehensive Stakeholder RepresentationA comprehensive representation of Stakeholder substantiated the meaningful and

significant discussion of the future of leprosy work and the persons afflicted by it.6

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BackgroundThe Global MDT implementation has tremendously changed the landscape and playing fields of leprosy in terms

of public health. The wider coverage and success in lowering the case load to the WHO indicator of prevalence rate

less than 1 case per 10,000 population has placed most endemic countries in the world in the level of elimination of

leprosy as a public health problem except in 1 country (more than 1 million populations)

Brazil. However, there are still significant new

cases being detected and to address this concern,

specific approaches of sustaining quality leprosy

activities and further reducing leprosy burden by

strengthening integration of leprosy control into

the general health services are currently being done

to sustain quality leprosy services. . However the

largest challenge is the “Human Face” of leprosy,

the social dimension of the disease encompassing

the issue of re-integration into the society, social


inclusion and participation, stigma and discrimination, capacity

and opportunities , human dignity and human rights which are

identified as urgent tasks worldwide.

More than ever today it is greatly recognized that active

involvement and participation of people affected by the disease

in all aspects of leprosy related activities in partnership with

different sectors of society is a key to success in addressing the

remaining challenges.

Through the years since 2003 with the sustained efforts

and commitment of Nippon Foundation /SMHF and IDEA

International and other ILEP organizations, there was an

increasing advocacy and lobbying in recognizing the rights of

the People Affected by Leprosy and their families toward self

determination, self-identity.

What had started as a small voice in lobbying on the UN Human

Rights Commission headed by Mr. Yohei Sasakawa, WHO

Goodwill Ambassador ,to address the issue of leprosy stigma

and discrimination against people affected by leprosy and their

families culminated in the adaption of the UN General Assembly

the resolution and its set of Principles and Guidelines in the

Elimination of Discrimination against people affected by leprosy

and their family members, one of the greatest achievements in

leprosy history

There are many formal and informal groups and networks

of people affected by the disease in the world today. A great

number worldwide are encouraged and assisted by IDEA

International as well as other NGOs like TLMI and those by

religious groups contributing much to the lives of people

affected by the disease within the country. The importance of

their role and variety of activities that they can take initiatives

in and contribute in terms of public health, health education

and advocacy and quality leprosy program implementation are

being increasingly recognized and emphasized lately. One such

example of the recent development can be found in the WHO’s

Coalition is a patchwork of independent organizations; when locked together

becomes a strong foundation for a synergized collaboration.

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Enhanced Global Strategy for Further Reducing the Disease

Burden Due to Leprosy 2011 – 2015 leprosy have become

significantly recognized, there has not been sufficient discussion

among leaders of the groups / networks at the national and

international level about partnership, shared vision and how to

establish and strengthen partnership with other groups such as

people with disabilities and other people’s organization locally or

internationally.

To properly and comprehensively address and meet above goal

and objectives, a loose coalition of the associations of the people

affected by leprosy in the Philippines is organized. A coalition

that will enhance networking opportunities and capabilities that

will lead to sharing information and resources, concerted action

and advocacy, wider participation of stakeholders, promoting

genuine integration and dignity, elimination of stigma and

discrimination, sustainability of organization which will all leads

to an improve quality of life of people affected by leprosy and

their families .

Coalition is a patchwork of independent organizations; when

locked together becomes a strong foundation for a synergized

collaboration. It is envisioned that this document will facilitate

the institutional development of an emerging coalition through

continuing capacity-building assistance.


A decade later, in retrospect, each and every PO now has their own success stories and their own good track records of PO work.

Although, some may not have progressed enough, sharing of their learning and experiences increases the over-all capability of these

POs to stay their course and overcome the challenges ahead.

IntroductionIn 1999 there was a gathering of People’s Organizations (POs) of Persons Affected by Leprosy including medical

practitioners, health workers and social workers in leprosy work. The gathering adopted the following statement:

We Persons with Leprosy and Persons Affected by Leprosy experience physical/social

isolation, frustration, financial insecurities, employment and educational deprivation

because of the social stigma attached to the disease. We Persons with Leprosy and Persons

Affected by Leprosy will not allow these circumstances to continue and affect our lives and

our future.

We strongly believe that Persons with Leprosy and Persons Affected by Leprosy have the

right to live a normal, happy and productive life if given an equal opportunity to develop

our potentials as persons of worth and partners in development.”

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With the knowledge that POs have pursued self-determination for

their desired future, the Sasakawa Memorial Health Foundation

(lead agency) together with Dr. Arturo Cunanan, initiated a

discussion, pursued consultation, and eventually undertook a

structured assessment to review the potentials of these POs and

its allied institutions for a more up-scaled work. This workshop

then affirms the necessity of such engagement in the form of

building a national coalition.


Form an organizational set-up, be it formal or

informal, which shall ensure equitable access to

information, social inclusion and participation.

All empowering processes designed to affirm

the dignity of People Affected by Leprosy;

and at the same time promote development,

accountability, and organizational capacity.

Experience a safe environment in which the

skills and knowledge of Persons Affected by

Leprosy are affirmed and recognized. Most of all,

this workshop is set to foster new learning.

Pursue a collective action and yet maintain the

individual autonomy of the POs.

The workshop is designed to foster a free environment conducive

for People’s Organizations of Persons Affected by Leprosy to

gel naturally with other stakeholders interested in leprosy

services. In effect, it builds the basic precepts of collaboration

& cooperation, elements which are critical in national coalition

building. After all, a coalition is a patchwork of independent yet

kindred organizations.

A coalition has potentialities when linked and mustered to

work together becomes a strong and durable foundation

for synergized collaboration. In this context, the workshop

facilitated an acceptable and appropriate environment for the

representatives of these various People’s Organizations’ (POs)

that will all lead to an improve quality of life of people affected

by leprosy and their families.

It is envisioned that this workshop will facilitate the

institutional development of an emerging coalition

through continuing capacity-building assistance.

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Process & MethodologyComing together is a process and an outcome. In pioneering initiatives, where the risk and returns are uncertain, what is important

is to cast a vision of what can be. Instead of focusing on what cannot be achieved, it is critical to stretch the imagination, listen to the

heart, and see beyond the eyes cannot see. Normally it takes a certain kind of strategic planning framework, a lens in which one can

interpret reality. This whole workshop takes into consideration these principles: dialogue, appreciative inquiry, and open space, that

when all combined together can foster a powerful force which can birth new realities.

Where are we now?

Day 1


Brief Walk-Thru of the DayPlenary Presentations

high

light

s

Workshop

PO Presentations of Luzon PO Experiences

Mr. Joseph Astrophel “Boyet” Ongkiko

ACHI, GRUPO, BSAPWDI, Star Dolls Cooperative, Sorok Uni Foundation

Dr. Emerose Moreno(MIMAROPA) representing Dr. Gloria J. Balboa, MD

USEC Teodoro Herbosa through Dr. Jasmine Peralta (DOH)

Dr. Katsunori Osuga WPRO-WHO

Hon. Cecilia Rachel Quisumbing Commission on Human Rights Dr. Arturo Cunanan, Jr. Culion Sanitarium Dr. Francesca Gajete (NLCP-DOH) Dr. Clemente Almonte (Sulu Sanitarium) Mr. Rey Coloma (TLMI) Mr. Mateo Lee (NCDA) Dr. Belen Dofitas (PLM) Ms. Joy Pontenila, Social Worker

Welcoming Remarks

Inspirational Messages

Keynote Speech

Recognition of Participants

Guest Presenters

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Dr. Emerose Moreno

Dr. Katsunori Osuga

Mr. Cresencio Rosello

Dr. Jasmine Peralta

Ma. Corazon Ariosa

Dr. Arturo Cunanan, Jr.

Opening Rites


key l

earn

ing

Renewed acquaintances & established new found friendships.

Gained new insights on Human Rights, Stigma & Discrimination, and Principle of Participation and Inclusion.

Received update on Government’s National Leprosy Control Program.

Best Practice of POs were shared: effective livelihood management on social credit and savings mobilization services, community reintegration, networking with other organizations, and advocacy.

Articulated dreams & aspirations which became a uniting factor for the formation of a national coalition given due consideration to:

Working together has a great value, it can lead to success. It sets the tone for collective action through a coalition;

Disability is not a barrier to success; and

Long-term Commitment is needed to achieve desired future.

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Mr. Cresencio T. Rosello opened the session with an Invocation, followed by the welcoming remarks of Dr. Emerose

Moreno(MIMAROPA)-representing Dir. Gloria J. Balboa MD. The inspirational message from DOH Undersecretary Dr. Teodoro Herbosa

was delivered by the Dr. Jasmin Peralta (DOH). Also another inspirational message from WHO-WPRO was delivered by Dr. Katsunori

Osuga. Dr. Ma. Corazon Ariosa introduced the Key Note Speaker: Hon. Cecilia Rachel Quisimbing (CHR); and, Dr. Arturo C. Cunanan, Jr.

introduced the workshop participants and explained the workshop objectives and mechanics.

Opening Rites

The keynote speech of Hon. Cecilia Rachel Quisimbing emphasized the value of Contribution & Cooperation. These are the two

necessary elements to achieve a greater goal in mind.

Keynote Speech: Hon. Cecilia Rachel Quisumbing


Plenary Session

Public Health and Social Dimensions of Leprosy in the Philippines

Dr. Francesca GajeteNational Program Manager National Leprosy Control Program (NLCP)

Sulu Sanitarium Support to People Affected by Leprosy Organization

Dr. Clemente Almonte IIIChief Sanitarium Sulu Sanitarium

Empowerment and Re-integration of People Affected by Leprosy

Mr. Reynaldo ColomaTLMI Country Support Facilitator

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Rights and Challenges of Persons with Disabilities in the Philippines and National Council Disabilities Affairs

Mr. Mateo LeeDeputy Executive Director NCDA

Philippine Leprosy Mission, Inc. – Experience in Empowerment of People Affected by Leprosy in the Philippines

Dr. Belen DofitasVice President & Executive Officer Philippine Leprosy Mission, Inc.

Baseline Assessment of PAL Association in the Philippines

Ms. Joy PontenilaSocial Worker


Workshop Proper

The introduction of the multi-drug therapy or MDT in the 80s brought about a dramatic decrease of leprosy cases.

Today, leprosy in the Philippines is considered “eliminated” as a public health problem. However, some challenges:

economic deprivation, social discrimination and social stigma remain to be concerns which need to be addressed.

Setting The Context

Scattered throughout the 8 sanitaria are groups of people

affected by leprosy. These people banded together and formed

themselves into formal and informal organizations.

Many of these loose organizations have been around for years

already. Most of these groups are recognized and have gained

the support of the sanitaria and NGOs.

From September 2010 to March 2011, an assessment of these

organizations was conducted to validate their existence and

functionalities.

The result of the assessment was presented by Ms. Joy S.

Pontenila at the plenary session. The presentation of the

assessment is found in the Annex section.

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Affirmation of Assessment Findings

To determine the major realization of the participants from the Baseline Assessment of People Affected by Leprosy Associations in the Philippines.

OBJECTIVE


Panahon na para magkaisa ang PEOPLE AFFECTED BY LEPROSY/PWL (It is about time to unite the PEOPLE AFFECTED BY LEPROSY/PWL).

Coalition How to operationalize a coalition?

Coalition (Collaboration & Partnerships)

Ipagpatuloy ang coalition (Pursue the coalition).

Coalition Partnership helps

Support the coalition Explore number of POs

Matatag na Samahan(Organize a national coalition).

How to operationalize a coalition?

Confidence More EmpowermentEmpowerment

Confidence Strong Participation Needed

Provision of LivelihoodEmpowerment

Binigyan kami idea para palakasin pa ang aming org at makatulong para sa communidad (We were given ideas how to enhance our organization and how to be of service to our community)

People’s Organizations Government Agencies Non-Government Organizations

Common Theme

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Continue serving the People Affected by Leprosy

SustainabilityPeople Affected By Leprosy Care & Welfare

Strengthened Referral System

Resource Mobilization

Core Values

Unconditional Love

Awareness

Gratitude

Makatulong, magandang pakingan (It helped, good to listen to)

People’s Organizations Government Agencies Non-Government Organizations

Common Theme

The tables show the major realizations of the representatives from various associations of People Affected by Leprosy (PO), Government Agencies and, Non-Government Organizations. Based on their activity

output, there seems to be a unanimous consensus for the need of a coalition.


Future Vision:

A short video-presentation was shown in the plenary showing the value of being “together.” After

which, the participants were tasked into small groups to draw their vision of tomorrow.

The whole activity was summarized by Mr. Randy Pepito in which he reiterated the power of

“together” in aspiring for a greater purpose.

To explore the participants’ vision of tomorrow (their aspirations and dreams) by reflecting the theme “Together has Power.”

OBJECTIVE

Dream Casting

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Solidarity Night

To break the ice, the participants played

an interactive inter-personal introduction

game: Human Bingo. Afterwards, four

(4) Peoples’ Organizations from Luzon

presented.

To foster fellowships among participants & Knowledge Sharing of Good Practices, learning, and experiences in running people’s organizations.

OBJECTIVE

A coalition without deeper inter-personal relationships with each other is meaningless.


participants playing the Human Bingo.

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Where do we want to go?

Day 2

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wor

ksho

ps

Brief Walk-Thru of the Day

Stigma in Leprosy

UN Human Rights Resolution to end Stigma and Descrimination

SNHF Experiences on Networking and Empowerment of PALs

The HANDA China Experience in empowerment of PALS

ASEAN Projects of Human Rights and Dignity

Dynamics of Coalition Building

Dr. Arturo Cunanan, Jr. Culion Sanitarium

Hon. Cecilia Rachel QuisimbingCommission on Human Rights

Ms. Hoshino Nao Sasakawa Memorial Health Foudation

Dr. Michael Chen IDEA China

Mr. Adi Yosep The Nippon Foundation

Mr. Norand “Randy” Pepito

Plenary Presentations

high

light

s

Workshop on Strategic Thrust Identification

Workshop on Strengths, Challenges, Opportunities, Insight

Presentation of Visayas and Mindanao PO Experiences


Ms. Joy Pontenila facilitated the group of NGO.

CBL, HFAWED, NBWAI, CSHMPC, BPC, Paloma, Islam, SSPDA, SSNWAI


key l

earn

ing

Economic (Freedom) Development;

Partnership, Networking, and Linkages;

Institutional Development;

Total elimination vs. Stigma & Discrimination;

Policy Advocacy;

Strengthening & Unifying POs.

Identified the key elements for a dynamic national coalition. Challenged to undertake research on Stigma in Philippine Context. Gained appreciation from neighboring Asian country experiences in organizing and managing Leprosy-related self-help Groups. Gained information on how to access resources from funding institutions, agencies, and like-minded organizations. Gained understanding on practical application of Human Rights in relation to People Affected by Leprosy and their families. Assessed the Internal Factors and External Environment in coalition building. Best Practice of POs were shared: effective livelihood management on social credit and savings mobilization services, community reintegration, networking with other organizations, and advocacy. Gained information in Alliance Building. PALS identified six (6) Strategic Thrusts of the coalition:

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Remembering Day 1

Music and songs are ways to express thoughts and feelings in a creative way. It is fun and non-threatening thereby allowing people

to articulate their learning in a safe environment.

To summarize the learning of participants from Day 1.OBJECTIVE

The participants were tasked to compose

a song to help everyone recall how Day 1

had encouraged them to move towards

the journey ahead. These are the lyrics of

their songs.

After the recapitulation of Day 1 (ANNEX B), the plenary sessions discussed the impact

of social stigma & discrimination on People Affected by Leprosy, Human Rights

approach to advocacy, and Empowerment experiences of People Affected by Leprosy

in China. Development Programs were also shared in the Plenary by Ms. Nao & Mr. Adi

Yosep.


Plenary Session

Stigma in Leprosy

Dr. Arturo C. Cunanan, Jr.Chief of Sanitarium III

Culion Sanitarium & General Hospital

UN Human Rights Resolution Ending Stigma and Discrimination against People Affected by Leprosy and their Families

Hon. Cecilia Rachel QuisimbingCommissioner, Commission on Human Rights

SMHF Experiences and Programs on Networking and Empowerment of People Affected by Leprosy

Ms. Hoshino NaoDeputy Manager Sasakawa Memorial Health Foundation

44 | PAGE

HANDA – The China Experience in Empowerment of People Affected by Leprosy

Dr. Michael ChenSecretary General, HANDA Rehabilitation & Welfare Association

TNF – ASEAN Project on Human Rights and Dignity

Mr. Adi YusefExecutive Director, TNF- Human Rights Dignity Project for Southeast Asia

Dynamics of Coalition Building

Mr. Norand “Randy” PepitoDevelopment Work Practitioner and

former Executive Director of Philippine Leprosy Mission.


Workshop Proper

To start the workshop proper, the participants were asked to form small groups. The groups were divided into

three major categories: (1) People Affected by Leprosy; (2) Government Organizations; and, (3) Non-Government

Organizations. The facilitators for these small group sessions are as follows Mr. Boyet Ongkiko (People Affected by

Leprosy), Mr. Randy Pepito (Government Agencies), and Ms. Joy Pontenila (Non-Government Organizations).

Looking Ahead:

The Government Agencies and Non-Government Organizations

were tasked to identify the Strengths and Challenges (Internal

Assessment) & Opportunities and Concerns (Environmental

Scanning) that may be relevant factors for the success of the

coalition. The output of their workshop is found in Annex A.

As for the representatives of the People Affected by Leprosy

associations, they were tasked to identify the key purpose and

functionalities of the proposed coalition. The next section shows

the core strategic thrust they were able to identify and articulate

in this session.

Planning & Strategic Formulation

46 | PAGE

Identifying Strategic Thrust

In a facilitated group discussion led by Mr. Boyet Ongkiko, the People Affected by

Leprosy were able to identify six core strategic thrust, namely: (1) Economic (Freedom)

Development; (2) Policy Advocacy; (3) Institutional Development; (4) Partnership,

Networking and Linkaging; (5) Strengthening & Unifying PO; and (6) Total Elimination

of Stigma & Discrimination.

The meanings and definitions of these “Thrust” were articulated by the participants

in their own words hereby, reinforcing ownership & participation. These are their

definitions:

To identify the core initiatives of the coalition for it to be a success.OBJECTIVE


Economic (Freedom) Development

Para sa amin ang pagkakaroon ng

kakayahan mamuhay ng maayos,

maiangat ang antas ng pamumuhay.

Gumawa ng mga produkto na

magiging trabaho nila (PEOPLE

AFFECTED BY LEPROSY). Maaring

pangkukunan pangkabuhayan =

from local product to commercial with

branches at Luzon, Visayas, Mindanao

at magkaroon ng international market

at hanggang higitan si Henry Sy.

To have an opportunity to live with

Dignity and Respect; to improve our

quality of life. To create products which

can provide work for People Affected

by Leprosy; and a venue for livelihood

opportunities. To be able to distribute

products locally with commercial

branches in Luzon, Visayas, Mindanao,

eventually to create distribution chains in

the international market until we become

better than Henry Sy.

1

{

48 | PAGE


Nabuo na ang coalition matatag:

Board of Officers

Registered sa SEC

Partners GOs & NGOs

Economic Development

Various IGP

Republic Act #

Kasalukuyang tinatamasa ang

bunga ng pagkakaroon ng isang

matibay na Coalition na kinikilala

ng pamahalaan at iba’t-ibang

NGO’s & GOs

Establish a strong coalition:

Board of Officers

Registered sa SEC

Partners GOs & NGOs

Economic Development

Various IGP

Republic Act #

Currently enjoying the fruits of having

a strong coalition, which is recognized

by the Government, the different non-

government organizations (NGOs), and

various government organizations (GOs).

2

{


Policy Advocacy

Bumuo ng grupo upang iskatuparan at

makagawa ng mga batas na lumilikha

na pantay-pantay na karapatan para

sa mga People Affected by Leprosy.

Mga Hakbang:

- Research O Pananaliksik

- Planning O Plano

- Lobbying O Paglapit/pakikipag-

ugnayan sa matataas na pinuno ng

Gobyerno.

Dream: “Pantay” na karapatan o

oportunidad upang makapamuhay ng

maayos ang lahat ng PEOPLE AFFECTED

BY LEPROSY at pati ang kanilang

pamilya upang maitaas ang kanilang

Dignidad.

To organize a group that shall lobby for equal

opportunity and policy advocacy regarding the

rights of People Affected by Leprosy.

Action points to consider:

Research;

Planning; and,

Lobbying.

Dream: Equal rights and opportunity for every

PEOPLE AFFECTED BY LEPROSY, including their

family, to live a quality life and, to restore their

Human Dignity.

3

{

50 | PAGE

Partnership, Networking & Linkaging

Isang coalition na may matibay

at epektibong ugnayan sa iba’t-

ibang sangay ng Gobyerno at

NGO na tumulong ipatupad ang

mga batas na poprotekta sa mga

PEOPLE AFFECTED BY LEPROSY

tungo sa economic development

at total stigma elimination

A coalition with a strong and effective

relationships with the different

government agencies and NGO who are

working towards policy development

& advocacy protecting the rights and

welfare of People Affected by Leprosy.

The thrust of Partnership, Networking

and Linkaging is to strive for economic

development of People Affected by

Leprosy and total stigma elimination.

4

{


Strengthening & Unifying People’s Organization

Pinalakas at pinagtibay na samahan

Regular na ugnayan ng mga kasapi

Kaalaman sa mga alituntunin ng

koalisyon

May kooperasyon at magandang asal

Lantad (transparency) na gawain ng

samahan

Matatag na ugnayan ng koalisyon at

lahat na ahensya na may kinalaman sa

tagumpay nito.

Enhanced & strengthened coalition.

Regular interaction of members.

Knowledge & understanding of the

coalition policy.

Cooperation, good-will, and right conduct

Adheres to the principle of transparency

Strengthened relationships among the

coalition members and all other enabling

agencies (individuals, organizations, and

entities which can be catalysts for its

success).

5

{

52 | PAGE

Total Elimination Of Stigma & Discrimination

Kaming mga PO naghahangad

na magkaroon ng tamang

impormasyon upang mawala ang

stigma at diskriminasyon kaya

palakasin ang public awareness

through advocacy sa tulong ng

iba’t-ibang ahensya tulad ng GO,

NGO, DOH at iba pa.

We, the PO, are aspiring to have the right

information about Leprosy for stigma

and discrimination against the persons

affected by Leprosy to be eliminated.

There is a need to enhance public

awareness through advocacy with

the cooperation of various entities:

government organizations (GOs), non-

government organizations (NGOs),

Department of Health (DOH), and others.

6

{

After defining and explaining their identified Strategic Thrusts, the participants were

tasked to represent visually the relationships of these Thrusts with each other. Their

picture representations are found in the Activity Photos, page 84 from the Annex

section.

OBJECTIVE


Solidarity Night:

Experience is the best teacher. An Open Space to share the best

practices, knowledge, and experiences of the participants in

managing their own associations. Dialogue is fostered across

participants providing a safe environment for non-structured

interaction. Their presentations are found in Annex E.

To share best practices and experiences in managing people’s organizations.

OBJECTIVE

How do we get there?

Day 3


Brief Walk-Thru of the Day

WHO Guideline for Strengthening Participation of Persons Affected by Leprosy in Leprosy Service

The PLM Experience in the Participation of Persons Affected by Leprosy in Leprosy Services

Dr. Katsunori Osuga (WPRO-WHO) Dr. Maria Gemma Cabanos (ALM)

Plenary Presentations

Workshop on National Leadership Formation

Workshop on the Roles of GAs/GOs & NGOs


Ms. Joy Pontenila facilitated the group of NGOs.

Mr. Norand ‘Randy’ Pepito facilitated the group of Government Agencies.

wor

ksho

pshi

ghlig

hts

56 | PAGE

Induction of National Leaders: National Coalition Board

Closing Remarks

Signing of Pledge of Commitment

Twelve (12) Board Members Elected & Inducted. One (1) Member was Appointed through a Board Resolution for Legal Compliance. Dr. Romualdez, (Culion Foundation) Dr. Francesca Gajete (NCLP-DOH) Dr. Arturo Cunanan, Jr. (Culion Sanitarium) Hon. Cecilia Rachel Quisimbing (CHR) Chairman Hilarion Guia (Chairman of the Board, National Coalition of People Affected by Leprosy) Fifteen (15) NGOs & International Institutions signed. Nineteen (19) POs signed. Eight (8) Sanitaria, Three (3) Government Hospitals, Four (4) Government Agencies signed.

closin

g rit

es


1st Business Meeting of the National Coalition Board

The meeting accomplished the following: Election of Key Officers: Chairman Hilarion Guia, Vice-Chairman Francisco Onde & Secretary Ittihaya Quisai; Appointment of the 13th Board Member, Mr. Celerino Estrella; Briefing of SMHF representative, Ms. Hoshino Nao, regarding their support to the coalition; Acceptance of Culion Foundation, Inc. as the Secretariat; The coalition Board requested for technical assistance in crafting their Strategic Plan from the Secretariat with the organizing committee.

busin

ess m

eetin

g

58 | PAGE

key l

earn

ing

Harnessing the authentic participation of Persons Affected by Leprosy can make the Leprosy Programs more effective. Facilitated the formation of a national coalition leadership Paradigm Shift of People Affected by Leprosy as mere recipients into partners of development & Leprosy Advocates Changed of mindset of Healthcare service providers and NGO workers from mere welfare providers into facilitators of wholistic intervention. The signed Pledge of Commitment can become an advocacy tool for gaining support for the cause of a strong & stable national coalition. The Persons Affected by Leprosy perceived the coalition as a venue for improving the quality of life of People Groups.


Remembering Day 2

Instant song composition seemed to have become a welcome activity among

participants. Acapella accompanied by sound improvisation through body techniques

highlighted the activity, even impressing observers from the international community.

The People Affected by Leprosy got talent! Since Day 1 compositions were mostly

employing traditional folk tunes, Mr. Boyet Ongkiko challenged them to compose music

incorporating a more modern tune: Rap Music! True enough, creativity, quick wit, and

camaraderie greeted the morning with vibrant energy and vivid colors. The songs of

their recollection for Day 2 are shown below:

To summarize the learning of participants from Day 2.OBJECTIVE

60 | PAGE

Plenary Session

WHO Guideline for Strengthening Participation of Persons Affected by Leprosy in Leprosy Service

Dr. Katsunori OsugaWPRO-WHO

Participation of Persons Affected by Leprosy in Leprosy Services: the PLM Experience.

Dr. Gemma CabanosALM


Workshop Proper

To start the workshop proper, the participants were asked to form small groups. The groups were divided into

three major categories: (1) People Affected by Leprosy; (2) Government Organizations; and, (3) Non-Government

Organizations. The facilitators for these small group sessions are as follows Mr. Boyet Ongkiko (People Affected by

Leprosy), Mr. Randy Pepito (Government Agencies), and Ms. Joy Pontenila (Non-Government Organizations).

Pathways to Collaboration and Partnerships

After the plenary sessions from guest presenters, the participants were gathered into

three sub-groups namely, Government Organizations, People Affected by Leprosy, and

Non-Government Organizations.

Both the Government Organizations and NGOs were facilitated by Mr. Randy Pepito

and Ms. Joy Pontenila, respectively, to align their existing programs and services to the

strategic thrust identified by the People Affected by Leprosy.

The output of the session is found in the tables in the pages that follow.

To identify the possible areas of partnerships for the Government Agencies & NGOs to work with the coalition.

OBJECTIVE

62 | PAGE

432

Concrete structure to work with or “lean on”

Continue the pursuits of becoming sustainable

Training on Community-Based Rehabilitation (CBR) Organizing building cooperative Continuing hospital service.

Harness LGU-GO-NGO collaboration

Assist in program/project development and delivery

Promote LGU adoption of Community-Based Rehabilitation (CBR)

Effective role of Duty Bearers

Relevant response to the needs

1 WHAT CAN BE DONE?

WHAT CAN BE DONE?

WHAT CAN BE DONE?

WHAT CAN BE DONE?

area

of e

ngag

emen

t


Health for all Harmonization, review & amendments of policies & resolutions

Implement policies with active participation of the persons with leprosy (PWLs)/[Persons Affected by Leprosy]

Policy Advocacy

Promote social entrepreneurship

Inclusion in annual investment plan Employment facilitation & enhancement

Livelihood program with corresponding skills development

Involvement in research work Continuous & regular awareness-raising involving the PWLs IEC support

Sanitaria Government Organizations, Agencies and Local Gov’t.

Government Hospitals

Inclusion in annual investment plan Employment facilitation & enhancement

Establish data-base of potential funding partners

Merging/convergence of programs/projects Strengthen referral system

Capacity building among the POs

Provision of technical assistance regarding governance & leadership

Collaboration and cooperation (identification of PWLs by working with the communities)

Mainstreaming and representation in national organizations

Bonding people group and other stakeholders

Capacity building Promotion of Community-Based Rehabilitation (CBR)

Case Identification Recruitment

Economic freedom & development

Total Elimination of Stigma and Discrimination

Partnership networking and linkages


Strengthening & unifying People’s Organizations (POs)

Strategic Thrust

Strategic ThrustGovernment Agencies

64 | PAGE

Suggest to link with Philippine NGO Council On Health and Development, Liza Hontiveros, Tito Rey

Policy Advocacy

Reviews of Projects and Research, CFI IGP (Income Generating Projects) Livelihood, Funding, PLM Support Cooperative Development Agency (CDA) Application, NVHSC

Resource Persons, PDS Research (Health Economics, Burden of the Disease) DS Research, SOROK UNI Information Education Campaign (IEC) Materials, Media Blitz Partners In Leprosy In Action (PILA), PLM

Group Support SOROK UNI Contact Tracing Counseling, IMAP Organized Referral System, PDS Support Training For Leprosy Experts, CFI Counseling Psychosocial Rehabilitation PMHNAP Link With Support Groups (Pharmaceutical Companies, Etc.), PDS

• Educate Organizational/ Business-Model NVHSC • Basic Management Training, NVHSC • Technical Support In Applying For Sec, PLM

• PO organizational strengthening and leadership, Tito Rey • Organize People Affected By Leprosy in natural villages, Tito Rey • Capacity Building: IMAP • Capacity Building: 1. Leadership 2. Organizational Management, PLM • Support, Creation Of Central Registry, CFI • Educational Assistance Program, PLM

Economic freedom & development

Total Elimination of Stigma and Discrimination

Partnership networking and linkages


Strengthening & unifying People’s Organizations (POs)

Strategic Thrust

Strategic ThrustNon-Government Organizations


Organizations Represented: Culion Foundation (CFI) , Philippine Leprosy Mission (Plm) , Sorok Uni Foundation (Sorok Uni ), Nurses Vox (NVHSC), Philippine Dermatological Society (PDS), Integrated Midwifery Association (IMA), Psychiatric Mental Health Association (PMHNAP), The Leprosy Mission International (LMI)

66 | PAGE

Any organization is a success if the right people are chosen to lead to it. Mr. Boyet

Ongkiko facilitated the process of leadership selection. He first started with leadership

selection criteria, then eventually, proceeded with the election.

All participants are grouped according to the three major island groups of the

Philippines: Luzon, Visayas, and Mindanao. Then they were asked to select among

themselves their representatives. From this pool of island representatives, the table

was opened for nominations. Suggestions for election procedures were also taken as

part of due process. Since there was an expressed need among the representative for

private voting, the facilitator suggested a blinded show-of-hands as part of the election

process. Later in the afternoon, as a highlight of the whole event, the coalition officers

were then inducted into office by the Hon. Cecilia Rachel Quisimbing.

Information below is the output of the whole workshop.

To Identify the leaders of the coalition.OBJECTIVE

National Leadership Formation


Leadership Selection CriteriaRespect

With knowledge & capabilitySapat na kaalaman at kakayanan

Representation from different geographic areas Sapat na kaalaman at kakayanan

Gender Sensitive [Balance]Balanced gender representation

Youth RepresentationMerong Kabataan

TrustworthyTransparency

Others-Oriented & God FearingPrincipled

Commitment

Values

Knowledge & Skills

Other Criteria

68 | PAGE

Originally, there were only 12 officers, however, after the first official meeting of the

coalition officers (7:30PM, 9 March 2010, Bay View Park Hotel), the number of officers

became 13. The 13th officer, placed into position through majority vote of the elected

officers is Mr. Celerino Estrella. Mr. Andrew Baylin (not in picture.)


List of Coalition OfficersLuzon

ACHI, (Culion, Palawan) Contact: 09205532190 Email: c/o [email protected]

Bicol Sanitarium Association of Persons with Disabilities, Inc. (Bicol Sanitarium) Contact: 09204954419 Email: c/o [email protected]

Star Dolls Multi-Purpose Cooperative (Tala, Caloocan City) Contact: 09394576165 Email: [email protected]

GRUPO (Tala Sanitarium) Contact: 09466040342 Email: c/o [email protected]

PGH Hansens Club (Taft, Manila) c/o Dr. Giselle Tioleco Contact: 09175303536 Email: [email protected]

Visayas Mindanao

Crisenciano Rosello

Virgilio Rito

Lolita Fernandez

Celerino Estrella

Andrew Baylin

Cooperative for Better Living (Western Visayas Sanitarium, Iloilo) c/o Linda Trajano Contact: 09207710722 Email: c/o [email protected]

Holy Family Association of Women (Eversley Childs Sanitarium, Mandaue, Cebu) Contact: 09488561509 Email: c/o [email protected]

Bernardo Flores

Rosie Panganiban

Interactive Society of Leprosy in Muslim Area (Mindanao Central Sanitarium Zamboanga City) Contact: 09212950250 Email: c/o [email protected]

Bagong Pag-Asa Cooperative (Pigcawayan Cotabato) Contact: 09206513175 Email: [email protected]

Misamis Occidental Hansens Club Contact: 09465161390 Email: c/o [email protected]

Biting Yusop

Seminiana Bawik

Antonio Verallo

Negative Welfare Homes Association, Inc. (Cebu City) Contact: 09194292612Email: [email protected]

Mr. Francisco Onde

Sulu Sanitarium Negative Women Cooperative (Jolo, Sulu) Contact: 09269375475Email: c/o [email protected]

Ittihaya Quisai

IDEA PhilippinesContact: 09392931375 Email: c/o [email protected]

Mr. Hilarion M. GuiaChairman Vice Chairman Secretary

70 | PAGE

Closing Rites

Closing ceremonies included Testimonial form Participants,

Signing of Pledge of Commitment & Closing Remarks from Dr.

Alberto G. Romualdez, Jr (President of Culion Foundation), Dr.

Arturo Cunanan, Jr. (Culion Sanitarium), Dr. Francesca Gajete

(NCLP-DOH), Chairman Hilarion Guia (Chairman of the Board,

national coalition of People Affected by Leprosy), and Hon.

Rachel Cecilia Quisimbing (CHR).

72 | PAGE

74 | PAGE


Working Together is Synergy

where the active participation of all

stakeholders result to a “sum” beyond

what could be expected by simply

“adding” the output of everyone.

Synergy best describes the people and

organizations behind this gathering from

preparation to the unfolding of each day.

And the same Synergy that was modeled

was hopefully caught by the persons for

whom this gathering was called for – the

Persons Affected by Leprosy.

Synergy thrives best in discomfort and

risk when the status quo becomes simply

unacceptable; when what is currently

“safe” can be exchanged for a “vision

of peace” where dignity and self-

determination thrives; when the only way

forward to this “vision of peace” might

mean a pathway to more uncertainties,

obstacles and risks. Synergy is called for

as the possibility of “what could be” drives

people and groups to come together,

wrestle with the issues, struggle in

making decisions and eventually celebrate

the journey of becoming an empowered

community. No risk is too great to hinder

Synergy to move forward.

And this is what excites me about this

gathering – when those who choose to

journey in synergy have groups who are

willing to journey in synergy with them.

After all, the “vision of peace” knows no

boundary. Government agencies and

Non-government organizations who are

proactively engaged in this coalition-

building process have manifested their

continued support. This only means that

the RISK involved will SHARED by all

stakeholders. So inversely, we can say,

Synergy divides the Risks to a size so small

for all stakeholders to take on.

Facilitator Observations, Insights, and Recommendation


Synergy is hard work where time,

resources and careful planning must

not be undermined. The gains of this

gathering are good starting points. The

results should propel us to move to the

next level – from coming together to

envisioning together, and then working

together. There are no short cuts to get to

“what we want to become”. The coalition

must now be carefully guided to the

path of strategic planning and capacity

building. Allowing them to articulate

through a strategic plan how they want to

become in the coming years. Identifying

the capacities that are essential for them

to competently develop and implement

programs that will significantly impact

their member POs, their coalition and

society as a whole.

Working together is Synergy which we

experienced the past three days.

Synergy thrives best in discomfort and

risks while evident, the past three days

were indeed comfortable and fun – they

need not get in the way.

Synergy is hard work. After the

celebration, let’s now get back to work.

76 | PAGE


Ms. Joy S. Pontenila

The future of Persons Affected by

Leprosy in the sanitarium may be

largely dependent on the Policies of

the Government. However, it is also a

matter of changing perspectives on

both: the People Affected by Leprosy

and the Government. The Government

and the other institutions can start

viewing that People Affected by Leprosy

as partners rather than mere recipient

of their services. Persons who had been

affected by Leprosy can now start seeing

themselves now as capable, productive

and contributing members of society.



Mr. Norand “Randy” Pepito

Significant gains have been made in

eliminating leprosy as a public health

problem. However, there is still a need

to complete the work particularly in

“reducing the social stigma and ultimately

changing the image of leprosy.” As Persons

Affected by Leprosy move on in life after

the disease, this is usually smacked of

social stigma. Because of stigma and

social indifference, Persons Affected by

Leprosy are deprived of a productive life.

Often times, they are socially uninvolved

even in their own midst.

In 1999 there was a gathering of People’s

Organizations of Persons Affected by

Leprosy including medical practitioners,

health workers and social workers in

leprosy work. The gathering adopted the

following statement:

We Persons with Leprosy and

Persons Affected by Leprosy

experience physical/social

isolation, frustration, financial

insecurities, employment and

educational deprivation because of

the social stigma attached to the

disease. We Persons with Leprosy

and Persons Affected by Leprosy

will not allow these circumstances

to continue and affect our lives and

our future.

We strongly believe that Persons

with Leprosy and Persons Affected

by Leprosy have the right to live

a normal, happy and productive

life if given an equal opportunity

to develop our potentials as

persons of worth and partners in

development.”

78 | PAGE

All individuals, including Persons Affected

by Leprosy, have aspirations: things they

want to achieve, to learn, to see and to do.

However, when aspirations are focused on

an issue beyond an individual’s control the

person often feels “powerless” to influence

system or decision-makers. In these

circumstances, people frequently display

an awareness of issue, but their behavior

is characterized by behavior of “inaction”.

Actually, their capability to change is

dependent on their critical understanding

of actual social relationships, economic

processes and spiritual life, at least to

the extent of how these influence their

own lives. And this presupposes a journey

of development of Persons Affected

by Leprosy, from a passive recipient of

welfare to an active participant for their

own development. Thus, this necessitates

cooperation by forming a collective

identity, or a coalition, for taking action

so Persons Affected by Leprosy can better

address their aspirations. They should

be motivated and enabled to seek new

horizons by making a conscious decision

to work with others from different

backgrounds or locations.

An established coalition will elevate

the People’s Organization’s capacity to

change their marginal situation, towards

their empowerment and eventual

transformation. Being together and

helping with one another would allow

individual development through groups’

efforts and can be an instrument for

change and in meeting the current social

needs. As a coalesced people group they

can transmit the ways of empowerment

and preserve the gains of transformation

in insisting their collective authority for

greater influence in their “right to live a

normal, happy and productive life.”

ActivityPhotos

80 | PAGE

Oath-taking of the Coalition Officers


Participants signing the symbolic Pledge of Commitment

82 | PAGE

Assorted sketches and artworks of partcipants showing future desired state.


Participants playing Human Bingo

84 | PAGE

Level up, Rap Day, Participants composed songs to recapitulate Day 1 and 2.


Representatives of different Peoples Organizations presenting their organizational profile in their small groups

86 | PAGE

Visual representation of the six (6) Strategic Thrusts of the National Coalition

88 | ANNEX

Annex AEnvironmental

Scanning

89 | ANNEX Working Together for an Inclusive Society

This following section is the output of both the small groups, Government Agencies and NGOs identified by the representatives. It shows...

Opportunities

Concerns

Strengths

Issues

90 | PAGE

Advocacy & Awareness Program and Livelihood Program with component capacity building interventions

government agencies

Sustainability of program – how to institutionalize

Linkages with LGU-GOs and local health department

Less focus on leprosy patients or support from clinical area

opportunities

concerns

strengths

issues

Facilitated by Randy PepitoDocumented & Assisted by Alonita Doctor

Possible utilization of big land areas

Lack of continuity and commitments

NGO support of Sasakawa Memorial Health Foundation & Culion Foundation

Proper fund allocation

The Participating Agencies are as follows: (1) Sanitaria, (2) East Avenue Medical Center, (3) Philippine General Hospital, (4) National Council on Disability Affairs, & (5) Department of

Labor and Employment.


Relationships, damay sa taong nahihirapan (compassion towards the suffering), collective experience Will to fight, strong determination Abundant resources Creative, adaptability, variety.

non-government agencies

Capabilities, education, skills training Lack of trust Dependence on dole out

Expansion to nationwide level, become global, international collaboration Supportive environment, supportive NGO’s, supportive CHR, group support More available resources, merging resources with other programs, resources Learn more, trainings, self-reliant Entrepreneurs Employment

Unsustainability, ningas kogon (unsustainable), diminishing interest, sustainability, sudden discontinuation of provisions Non-acceptance, community treatment issue (discrimination), fear of outside community, Personal interest, possible exploitation, power struggle, dispute between P.O.’s

opportunities

concerns

strengths

issues

Facilitated by Joy PontenilaDocumented & Assisted by Elmer Bernardo

Table showing the output of the small group discussion by Non-Government Organizations.

92 | PAGE

Leprosy ambassador, Piolo Pascual embraces PEOPLE AFFECTED BY LEPROSY’s.

Entrepreneurial training

Review of Laws, DOH policy after treatment

National PEOPLE AFFECTED BY LEPROSY’s cooperative

Educating the PO’s and the community

One Policy

Learnings & Suggestions For Action (By The Ngo Group)


Maritess SOROK: God gave me this ministry. It is only in the

community I knew about leprosy. When I heard from others, we

have same issues and problems, eye opening bigger issues pala.

Pastor: matagal na nagwowork sa Hansen(I have been long

working at HANSEN), fellowship, refreshing

(unnamed participant): before ka makapag-isip (before you can

think), you have to know them

Elena, IMAP: nakakatouch na naiintindihan ko na ngayon, mga

fears na narereject, di sila kumukuha ng gamot maybe because

of rejection, more understanding.

(I am touched, now I understand. There is fear of rejection. The fear of rejection may be one of the reasons why they do not get their medicines. There is a need for

more understanding).

Wataru: one poet says leprosy causes people to distance but also

people to unite. I can bring Japanese students to help alleviate

living conditions, for them to live with the community. These

activities can diminish the discrimination

New LearningsJohn Francis: research on NGO’s in caring for PEOPLE AFFECTED

BY LEPROSY’s. PEOPLE AFFECTED BY LEPROSY volunteers living

condition. Social process in understanding volunteerism. Nurses

have roles to play; They have to be convinced to take part in this

initiative.

John: new to the program, knows that it is curable. I was not

afraid, although, I was afraid before (in my thoughts). Advocacy,

Doc Rodora: as a doctor, doctor cures the disease ends the

involvement, realized the social aspects is needed. Social aspect

of the disease needs more attention, disabilities did not catch

the attention, the difficulties being refused in school and,

informed citizenry is a responsive citizenry... if people know... if

the patients know…

Ate Joy: religious, many stories of helping, big picture, nobody

walks alone.

94 | PAGE

Annex BList of Participants


People’s Organizations

Bukal ng Buhay Contact: 0939.288.6007 Email: [email protected] Representatives: • Emelinda V. Cruz – Proj. Coordinator • Sally Gregorio • Thelma Formuso PGH Hansens Club Contact: 5262397 Mobile: 0917.530.3536 Representative: • Andrew Baylin – President • Marco Villamor – Vice President

Bicol Sanitarium Assoc of Persons with Disabilities (BSAPWDI) Contact: 0920.495.4419 Representatives: • Virgilio Rito – President • Hector Dimdam

Sorok Uni Foundation Contact: 0917.592.1724 Contact Person : Bernadette Dela Cruz Representatives:• Ronnie Cabili • Pepito Dela Cruz

Star Dolls Multi-Purpose Cooperative Contact: 3817704 Email: [email protected] Representatives: • Lolita Fernandez – Chairperson • Noemi Pagaragan – Manager • Ella Coral – Treasurer GRUPO (DJNRMH) Contact: 9269884 Mobile: 0949.927.4007 Email: [email protected] Representatives: • Nazareno Acosta – Project Coordinator • Celerino Estrella – President • Cristobal Occasion Jose Reyes Medical Center Contact: 0917.817.3065 Contact Person: Dra. Venida • Jerson Banal ACHI (Culion Sanitarium) Contact: 0928.281.2276 Representatives: • Mr. Cresencio Rosello – President • Mr. Rafael Celestial Sr.

IDEA Phils. Contact: 09392931375 Email: c/o [email protected] • Hilarion M. Guia - Chairman

Luzon

96 | PAGE

Cooperative for Better Living (WVS, Iloilo) Contact: 033.523.9515 Mobile: 0917.839.7199 Representatives: • Bernardo Flores – Chairman • Rodolfo Albar – Manager Negative Barrio Welfare Homes Assoc. (Cebu) Contact: 0907.797.3722 Representatives: • Frank Onde – Chairman Contact: 0919.429.2612 Email: [email protected] • Cleofe Borres – Manager Holy Family Assoc of Women (HFAWED, ECS) Contact: 0918.6963708; 0915.8379208 Email – [email protected] Representatives • Jennifer Quimno – President • Rosie Panganiban – Project Manager

Visayas



Cotabato San Hansenites Multi-Purpose Coop Contact: 0920.444.2117 Representatives: • Kado Indal – Chairman • Concordio Suner - Manager Bagong Pag-Asa Cooperative – Cotabato Contact: 0920.651.3175 Email: [email protected] Representatives: • Dominador Sabado – Chairman • May Bawik - Manager Persons Affected by Leprosy in Mindanao Area (MCS, Zamboanga) Contact: 0919.268.9724 Representatives: • Cora Bagor – President • Jocelyn Maghanoy – Project Manager

Interactive Society of Leprosy Association In Mindanao (ISLAM, MCS Zamboanga) Contact: 0921.295.0250 Representatives: • Biting Yusop – President • Hatta Asadil – Project Manager Sulu Sanitarium Negative Women Coop (Jolo) Contact: 0905.614.2270 Representatives: • Sahaya Kipli – President • Ittihaya Quisai - Secretary 0926.937.5475 Sulu Sanitarium Pedicab Drivers Coop (Jolo) Contact: 0905.614.2270 Representatives: • Imran Hassan – President • Nasser Sahibul - Treasurer

Mindanao


Misamis Occidental Hansens Club Contact: 0917.702.1659 Email: [email protected] Representatives: • Hilton Lacsao – President, 0946.5928.222 35 • Antonio Verallo – Vice President, 09996062348 17.

98 | PAGE

DJNRMH (Tala)Contact: 9269884Email: [email protected]• Dr. Ed Javillonar – Chief of Sanitarium• Corazon Carson - Social Worker Bicol Sanitarium Contact: 054 4732244; 054 4724422 • Dr. Susan Barrameda – Chief of Clinics • John Sime Jeremias – Leprosy Coordinator Eversley Childs SanitariumContact: 032.346.2468; 0917.700.7756• Dr. Lope Ma. Carabaña – Chief of Sanitarium • Nancy Sabuero – Social Worker Western Visayas Sanitarium Contact: 033.5239515 Email: [email protected] • Dr. Anna De Guzman – Chief of Sanitarium • Angelita P. Somcio – Head Nurse

Culion SanitariumContact: 0928.281.2276Email: [email protected]• Dr. Arturo C. Cunanan, Jr. – Chief of Sanitarium• Gemma Neri – Social Worker Cotabato Sanitarium Contact: 064.4290082; 064 4290133 • Jocelyn Ledesma – Admin. Officer • Muhajera Mamento – Social Worker Mindanao Central SanitariumContact: 09053697601Email: [email protected]• Dr. Alfonso Montuno – OIC• Dr. Jose Valera – MS II• Eumelia Abarri – Social Worker Sulu SanitariumContact: 0917.722.3391Email – [email protected]• Dr. Clemente Almonte – OIC• Mukim Sibba – Social Worker

Sanitaria


• Usec. Teodoro Herbosa Undersecretary of Health Department of Health• Dr. Jasmin Peralta - DOH-SCTC• Dr Francesca Gajete National Program Manager National Leprosy Control Program (NLCP)

• Trinidad Twinkle – Nurse• Edna Corpuz – Admin. Assistant I• Catherine Dimaano – Nurse Coordinator

Department of Health

100 | PAGE

Partners • StakeholdersPhilippine Leprosy MissionContact 3321735 • 3766142• Dr. Belen Dofitas – Vice President• Lorna Lumtoan – Social Worker Novartis Foundation for Sustainable Development • Dr. Teng Dioko - Contact: 09175698168 Sorok Uni FoundationContact: 09175921724• Mr. Jae Jang• Ms. April Castillo• Bernadette Dela Cruz• Marycon Bantua• Reel Vincent Billones• Eren Jane Margallo• Marites Sua

Culion Foundation• Dr. Alberto Romualdez - President• Dr. Corazon Ariosa – Exec. Dir. Contact: 09052286203• John David – M&E Officer• Marla Urizza• William Asuncion WPRO-WHO • Dr. Katsunori Osuga American Leprosy Mission• Dr. Gemma Cabanos National Council for Disabilities Affairs • Mr. Mateo Lee Ng – Deputy Exec. Director Contact: 9516033 • 9515925 • Myrla Sedenio – Planning Officer

Commission on Human Rights• Hon. Cecilia Rachel Quisimbing Department of Labor and Employment • Kristine Abbie Argena Contact: 288-1667 Department of Social Welfare and Development.• Fredlyn Alcancia – SWO III Contact: 951-7124 Phil. Dermatological Society • Dr. Ma. Teresita Gabriel - President Contact: 09189457425 Email: [email protected] • Dr. Elainor G. Casal RITM• Dr. Kathryn Sarao – Resident Contact: 09053457140

Rotary Club of San Jose del Monte Central• Ms. Hermilina C. Balina - President Contact: 0915517020

Rotary Club of Manila Midtown• Mr. Rolley So Contact 09175290134 Email: [email protected] League of Municipalities of the Philippines • Dr. Paul Evangelista Culion Vice Mayor Integrated Midwifery Assoc. of the Phils.• Ms. Patricia Gomez - President Contact: 09205653470 Email: [email protected]• Ms. Ma. Elena Sarip


Psychiatric Mental Health Nurse Assoc.• Ms. Russell Gajete Contact: 09266501932• Rex Enriquez Nurses VOX for Health Service Coop• John Francis L. Faustorilla, Jr Media Relation Officer Contact: 09228822799 Email: [email protected] Tropical Disease Foundation • Dr. Roberta Romero Contact: 09189334427 Email: [email protected] East Avenue Medical Center• Dr. Marielle Villanueva - Consultant Contact: 09175343065 Email: [email protected]• Dr. Irene Tinsay – EAMC Derma, Resident Contact: 09234421972• Rachel Mansibang – PHU• Lorena Perdigon – PHU• Marilyn Barza – PHU Jose Reyes Medical Center • Dr. Ma. Luisa A. Venida Contact: 09178173065 Email: [email protected]• Dr. Emerose Moreno CHD IV-B MIMAROPA Iloilo Mission Hospital • Sergio P. Lacanilao Physical Therapist • Dr. Christopher de Guzman Consultant

Sasakawa Memorial Health Foundation • Ms. Hoshino Nao Deputy Manager

HANDA China • Michael Chen Secretary General • Mr. Liu Zhenxi Vice President • Mr. Adi Yusef Executive Director, TNF - Human Rights and Dignity Project Southeast Asia The Leprosy Mission International• Mr. Reynaldo Coloma TLMI Country Support Facilitator Phil. General Hospital • Dr. Giselle Tioleco Resident • Maila Tenorio Social Worker Kyoto University• Wataru Kusaka Professor, Social Studies

102 | PAGE

Annex CSchedule of Activities


Schedule of ActivitiesOpening Remarks Invocation

Philippine National Anthem Opening Remarks

Inspirational Message

Inspirational Message

Introduction of the Keynote Speaker

Keynote Address

Introduction of Participants, Workshop Agenda and Objectives

PHOTO SESSION – BREAK

Public Health and Social Dimensions of Leprosy in the Philippines

Mr. Cresencio T. RoselloPresident, ACHI Dr. Emerose Moreno MIMAROPA USEC. Teodoro Herbosa through Dr. Jasmin PeraltaDepartment of Health Dr. Katsonori Osuga Team Leader – WHO-WPRO STOPTB/Leprosy Program Dr. Ma. Corazon AriosaExecutive DirectorCulion Foundation Inc. Hon. Cecilia Rachel Quisimbing Commissioner Commission of Human Rights Dr. Arturo C. Cunanan Jr.Chief of Sanitarium IIICulion Sanitarium and General Hospital Dr. Francesca GajeteNational Program ManagerNational Leprosy Control Program (NLCP)

1day

104 | PAGE

Sulu Sanitarium Support to People Affected by Leprosy Organization

Empowerment and Re-integration of People Affected by Leprosy

Rights and Challenges of Persons with Disabilities in the Philippines and National Council Disabilities Affairs

Q & A

Philippine Leprosy Mission, Inc Experience in Empowerment of People Affected by Leprosy in the Philippines

Baseline Assessment of PAL Association in the Philippines

BREAK

Workshop 2 Reasons on the Need for a National Coalition of People Affected by Leprosy-NCPALS

DINNER

Solidarity Night 1

Presentation of Luzon Peoples Organization

Dr. Clemente Almonte III Chief Sanitarium Sulu Sanitarium Mr. Reynaldo ColomaTLMI Country Support Facilitator Mr. Mateo Lee Deputy Executive Director NCDA Dr. Belen Dofitas Vice Pres. & Executive Officer Philippine Leprosy Mission, Inc. Ms. Joy PontenilaSocial Worker


Stigma in Leprosy

UN Human Rights Resolution Ending Stigma and Discrimination against People Affected by Leprosy and their Families

Q and A

BREAK

SMHF Experiences and Programs on Networking and Empowerment of People Affected by Leprosy

HANDA – China Experience in Empowerment of People Affected by Leprosy

TNF – ASEAN Project on Human Rights and Dignity

Models of Collaboration

Q and A

LUNCH BREAK

Workshop 3 Key elements of a dynamic National Coalition List perceived Strengths and Opportunities for NCPALS

BREAK

Workshop 4 Continuation List perceived Issues and Concerns

DINNER

Dr. Arturo C. Cunanan, Jr. Hon. Cecilia Rachel Quisimbing Ms. Hoshino NaoSasakawa Memorial Health Foundation Dr. Michael Chen Secretary General HANDA Mr. Adi Yusef, Exec. Director TNF- Human Rights Dignity Project For South East Asia Mr. Norand “Randy” Pepito

2day

106 | PAGE

The PLM Experience in the Participation of Persons Affected by Leprosy in Leprosy Services

WHO Guidelines for Strengthening Participation of Persons Affected by Leprosy in Leprosy Services

Workshop 5 Core Values of a National Coalition of People Affected by Leprosy Roles in the sustainability of the National Coalition of People Affected by Leprosy

BREAK

Workshop 6 Strategic priorities for the first year of the National Coalition of People Affected by Leprosy; Identify agenda for Policy Advocacy in support of NCPALs

LUNCH BREAK

Workshop 7 Election of officers for the National Coalition of People Affected by Leprosy Continuation of Policy Advocacy (posting of outputs for Gallery walk)

BREAK

Presentation and Oath

Signing of Pledge of Commitment

Closing

Dr. Gemma Cabanos American Leprosy Mission

Dr. Katsunori OsugaWHO-WPROStop TB/ Leprosy Program3day

108 | PAGE

Annex DOrganizing Team


1st Row, Left to Right: Dr. Arturo C. Cunanan, Jr, William Asuncion, Norand “Randy” Pepito. Joy S. Pontenila.

2nd Row, Left to Right: Marla Urizza, Jesusa Joan L. Centeno, Elmer Bernardo, Alonita ‚Nites Doctor, Hon. Cecilia

Rachel Quisimbing, Catherine Joy ‚Sukha Valdez, Dexter Gamboa, Joseph Astrophel “Boyet” Ongkiko.

110 | PAGE

Arturo C. Cunanan, Jr. MD, MPH, CSEE, FPLS, PhD

Dr. Arturo C. Cunanan Jr., currently

the Director of the Culion Sanitarium

and General Hospital and Head of the

Culion Leprosy Control & Rehabilitation

Program, who is responsible for the

elimination of leprosy as public health

problem in Culion. He spearheaded the

establishment of the Culion Museum and

Archives. He also coordinates scholarships

and other support projects of the

Sasakawa Memorial Health Foundation

in Culion. The adviser and coordinator

of the Association of Culion Hansenites,

Inc. assisting in the fund sourcing and

management of livelihood projects of

people affected with leprosy. He is also

the past president of Parents-Teachers-

Community Association of Balala

Elementary School and Culion National

High School.

He is a member of the National Technical

Working Group in leprosy who conducted

several researches in leprosy and public

health. A short term consultant in leprosy

in the WHO Western Pacific Region since

1998, actively associated and involved in

the global effort to end discrimination

and social stigma against people affected

with leprosy and their families, has

been involved in the Global Preservation

of Leprosy History and helps organize

IDEA-Philippine Chapter, an international

association for Integrity, Dignity, and

Economic Advancement of people

affected with leprosy and their families.


He has given lectures at National

and International level and conducts

trainings and evaluation of leprosy

control programs in different parts of the

Philippines and Asia Pacific.

He is a recipient of various local, national

and international awards and in 2009 was

awarded The Outstanding Filipino Awards

(TOFIL Awards) in Public Health and Ten

Outstanding Physician in 2009 by the JCI

Senate Philippines.

Dr. Cunanan earned his Bachelor’s

Degree in Medical Technology-Cum

Laude and Doctor of Medicine at the

Pontifical and Royal University of Santo

Tomas, Masters in Public Health and

Hospital Administration at the University

of the Philippines-Manila College of

Public Health with Honors and PhD in

International Health at the Nuffield

Institute of Health, University of Leeds,

United Kingdom as an International Ford

Foundation Fellow.

112 | PAGE

Joseph Astrophel “BOYET” Ongkiko

Boyet’s goal in life is to see the Philippines

as a nation where its people are living out

to the fullest their God given potentials to

make poverty a thing of the past. As such

a strategic focus is in Capacity Building of

the various stakeholders, not only with

the necessary content (knowledge), but

more importantly, a training approach

that is engaging, participative and

empowering; where the learners are

honored, respected and their experiences

given value.

Boyet Ongkiko is a licensed Dialogue

Education practitioner. He finished both

basic and advance courses under Peter

Noteboom, president and Senior Associate

of Global Learning Partners (GLP). GLP is

a North Carolina corporation specializing

in teaching curriculum design and

facilitation skills for learners. Mr. Ongkiko

has conducted over 16 dialogue education

courses throughout the Philippines.

Boyet is a Bachelor of Science in

Development Communication graduate

from the University of the Philippines

(U.P.), Los Baños. He has also completed

all the course work required for a Masters

in Development Management degree,

also from U.P. Los Baños.

He has written and conducted a module

on “Effective Teaching Approaches

and Methods” for Pastors and Bible

School Teachers in Vietnam. He has

also conducted various seminars (e.g.

strategic leadership and communication)

for organizations like: the College of

Development Communication, U.P.

Los Baños; the Department of Health;

Department of Public Works and

Lead Facilitator & Workshop Designer


Highways; Laguna Lake Development

Authority; and Via Venetto and Francesco

Companies.

Currently Boyet serves as Director of the

Center for Transformational Development

of the Asian School for Development

and Cross-cultural Studies (ASDECS),

and a partner of KamayLaan - an

outdoor adventure, and Organizational

development consultancy group. He is

also consultant for Philippine Center

for Indigenous Missions, ICI Ministries,

Operation Compassions and the Philippine

Council of Evangelical Churches (PCEC).

Boyet has held leadership positions in

various capacities; but most of all he

is a father of 4 children and is a loving

husband to Chi.

Specialties

Adult Learning; Workshop Design and

Facilitation; Module development;

program design, development,

monitoring and evaluation; Strategic

communication; video production;

Organizational Assessment and Strategic

Planning.

114 | PAGE

Norand “Randy” Pepito, MBA

A Christian development work

professional-practitioner since 1987,

including a five-year international

experience, with the following core

competencies: (1) Managerial: Administer

a national office & the corresponding field

operations of an organization engaged

in humanitarian & development work;

Strategic planning and budgeting;

Networking both in a government &

non-government set-up. (2) Technical:

Program and project development,

implementation, monitoring and

evaluation, Facilitate organizational

development interventions, Project

proposal writing and fund-raising.

Randy has held various leadership

positions for faith-based institutions, and

international development organizations

(The Leprosy Mission Inc., and American

Co-Facilitator


Leprosy Mission) serving as a regional

coordinator and liaison for program/

project monitoring and evaluation. He has

also been a country representative to the

World Health Organization for Leprosy for

several years. Currently, he is the Executive

Director of Lingap Pangkabataan, Inc.

Randy is an MBA (University of Negros

Occidental-Recoletos, Bacolod City).

He is also a BS in Commerce Major

in Accounting ( Colegio de San Jose-

Recoletos, Cebu City and West Negros

College, Bacolod City); and, a Diploma

in Human Resources Development,

(Human Resources Center, Department of

Psychology, Ateneo de Manila University).

His trainings include Results-Based

Management (Asian Institute of

Management); Evaluation (Malaysia

& India); Epidemiology and Health

Services Researches (Erasmus Medical

Center, Netherlands); Early Childhood

Care & Development , Community

Organizing & Participatory Action

Research, Development Supervision,

and Entrepreneurship ( University of

the Philippines); Strategic Advocacy for

Health NGOs and Civic Organizations

(Ateneo School of Government), and

Counseling.

116 | PAGE

Ms. Joy S. Pontenila

Joy is Licensed Social Worker who served

Persons Affected by Leprosy for more

than 12 years mostly in Development

Management. She has also worked with

several NGOs for almost two decades

in areas of community organizing,

leadership training & micro-finance.

Among her most significant contribution

to the welfare of Persons Affected by

Leprosy (PAL) is to influence & support

them to move towards coalition-building.

She used to be a Board Trustee of the

Philippine Leprosy Mission (PLM). Then

she served as its Program Development

Officer from 2002-2008.

Currently, she does free-lance & volunteer

work.

Joy is a B.S Social Work at Silliman

University

Co-Facilitator


Catherine Joy “Sukha” Valdez, MDE DipSIM

An independent Research & Management

Consultant specializing in Program

Monitoring & Evaluation for Non-Profits;

and, Strategic Information Management

for IT, Technology, and Creative Based

Industries. She is a Senior Researcher

at Competitive Insights Research &

Consultancy; and, is an Associate Senior

Consultant at MICRA.

Her experience include Development

Management for Christian Reformed

World Relief Committee (CRWRC),

Presidential Management Staff (Republic

of the Philippines), and Galing Pilipino

Movement Foundation; Development

Research & Program Evaluation for

Compassion International and Institute for

Studies in Asian Church & Culture (ISACC).

She has also worked for the Philippine

Estates Corporation in Corporate Planning

Lead Documenter & Assistant Facilitator

118 | PAGE

in Dialogue Education, Knowledge

Management, Business Intelligence,

Micro-Finance Risk Management, and

Philippine Council for NGO Certification

(PCNC) Evaluation. Her trainings include

Appreciative Inquiry, Research &

Evaluation (Compassion International,

Kampala, Uganda), Non-Profit Board

Management, and Fundamental Analysis

& Technical Analysis for Corporate Finance.

On her spare time Sukha designs clothes

& accessories, takes care of her six dogs,

and dances.

Specialization: Program Monitoring

& Evaluation, Strategic Planning &

Formulation, Business Development,

Financial Analysis, Project Management

& Evaluation, Knowledge Management,

Business Intelligence & Research.

and Business Development before

becoming a full-time Entrepreneur.

Sukha is a Peace-builder President of

the Rotary Club of Ortigas East, a Vice-

President of the Knowledge Management

Society of the Philippines (SKMP), a Core

Member of the Passionate Community for

Christ (PCCI), a member of the Association

of Christian Economists (ACE), a member

of the Philippine Economics Society (PES),

and a Volunteer of the Galing Pilipino

Movement.

Sukha is an M.A in Development

Economics (UP, Diliman, School of

Economics); a Diploma in Strategic

Information Management (Asia Pacific

College); and an A.B Humanities Major

in Business Administration (University of

Asia & the Pacific). She has Certifications


ELMER BERNARDO, Engr.

Elmer is a Business Coach and Training

Consultant specializing in Leadership

Development. He is a decision-maker at

The Achievers (NU SKIN) of which he was

given the “Millionaires Circle Award” and,

of Echo Adventure for more than five (5)

years. He used to be affiliated with various

semi-conductor companies working as a

system specialist, and a quality-control

engineer.

Elmer has held leadership positions

in various faith-based para-church

organizations and is currently, the

Program Coordinator and Facilitator of

Echo Adventure (a leadership training

and development group specializing

in outdoors adventure). He specializes

in curriculum development, training,

facilitation, and team-building.

Elmer is a licensed Chemical Engineer and

a B.S Chemical Engineer at the University

of the Philippines, Los Banos. His areas

of experience include Fluid Mechanics,

Extraction, and Systems Development.

Elmer is passionate for youth formation &

development, of which he has provided

leadership training and mentoring.

Assistant Documenter & Facilitator

120 | PAGE

Alonita Salazar “Nites” Doctor

Nites is an Entrepreneur with a Vision,

sustained by a Heart for the Uninformed

and fueled by a Mind for Business. For her,

‘Living for something other than God’s

intended purpose is a waste of life. As a

Career Direct Consultant (Accredited to

serve globally), she is passionate to let

people understand what God, the Creator,

has bestowed upon each person. For

her, being an enabler in seeking God’s

Will for people’s lives is what makes her

consultancy worth pursuing.

Nites had 12 years’ experience in Sales

Management serving as a Regional Sales

Manager of Beneficial Life (a 50 year old

life insurance company). Presently, she

is a Career Direct Consultant of Crown

Stewardship Association, Global; and the

General Manager of All Fours Ventures

(An events services ministry & business).

She is also a Volunteer of Evangelical

Business People & Entrepreneurs for

Social Transformation (eBEST) serving as

its Program Coordinator for more than 3

years.

Nites is a BS in Agriculture Major in

Animal Science (UP, Los Baňos).

Assistant Documenter


Jesusa Joan “ Sansu” Centeno

Has an extensive experience in liaison

and coordination work related to Office

Administration and administrative

support services. She is also proficient in

financial accounting and record keeping

making sure all disbursements comply

with established procedures & control.

She also book-keeps and has experience

in preparing Financial Reports.

Sansu also had development

experience working with various

People’s Organizations doing training

for accounting procedures, fund

management, bookkeeping/record

keeping and financial audit. She also

conducts training on QuickBooks

accounting software.

Her most invaluable contribution to the

welfare of Leprosy affected persons is

her efficient and effective administrative

support to the monitoring and audit of

the eight leprosy sanitaria in the country.

Sansu is a Bachelor in Office

Administration at the Polytechnic

University of the Philippines.

Currently, Sansu is helping her husband

pastor a church in Dagupan City.

Secretariat

122 | PAGE

Dexter Gamboa

Dexter is B.S Development (UP Los Baňos)

holder working as a Freelance Multimedia

Specialist. He has extensive experience

in Videography and Video Editing

documenting events for humanitarian

organizations like World Vision & Child

Fund.

Dexter loves running, camping, and

photography.

Multi-Media Documenter

a world without leprosy

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