CysticFibrosis

Worldwide

...working to increase quality of life and life expectancyfor people with cystic fibrosis in developing countries

www.cfww.org

2 0 0 3 A N N U A L R E P O R T

What is Cystic Fibrosis?Cystic fibrosis (CF) is the most common, life threatening

inherited disease amongst the Caucasian population.

There are an estimated 100,000 sufferers worldwide and

1 in 2500 live births of children with cystic fibrosis.

In developed countries average life expectancy

for people with CF is approximately 30 to

33 years but in most developing countries,

the life expectancy falls well below 12.

Most children born with CF in

underprivileged parts of the world

die undiagnosed lost in child death

statistic with little done to improve

their lives or the lives of those

to come.

Cystic Fibrosis WorldwideCystic Fibrosis Worldwide (CFW), formed after the

merger of the International Adults CF Association

(IACFA) and the International CF (Mucoviscidosis)

Association ICF(M)A, is dedicated to improving quality

of life and life expectancy for people living with

cystic fibrosis (CF) in developing countries. CFW

has 58 member countries with many new members

coming from developing parts of the world. With

these new memberships comes an awareness of

the desperate situation for those who have CF, are

caregivers or medical professionals in countries

like Bulgaria, Georgia, Uruguay, Mexico and

South Africa to name a few.

It is the mission of CFW to reach out to these

countries by working to help develop effective

CF clinical care. This includes helping to organize

much needed medications, development,

training and education of health care

providers and spreading awareness of CF

at the government and community levels. It is

our objective to find a solution that will bring

long-term benefits to the existing people with

CF and to those patients who will be born in the

future. Until a cure is found, we will strive to provide

humane situations for those who are currently suffering

from an inhumane disease globally.

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“I am very proud to be President of this beautifulassociation and I count on the support of all of you

as we move forward.”

Herman Weggen, President CFW

VisionTo be recognized worldwide as the

provider for people around the

world, living with or supporting

those with Cystic Fibrosis, as the

initiator, promoter and provider of

quality therapies and giver of

educational support in order to

enhance and extend the lives of those

who live with the disease.

To provide support through

established relations as a means

of ensuring all people with Cystic

Fibrosis are represented equally

in their communities worldwide

and provided the opportunity to

participate fully in their societies

no matter where they live.

MissionCystic Fibrosis Worldwide works to

promote access to appropriate care

and education to those people living

with the disease in developing

countries and to improve the

knowledge of CF among medical

professionals and governments

worldwide.

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President’s ReportIt is pleasing to be able to write this report on the firstyear’s operations of Cystic Fibrosis Worldwide. Overthe past year we have faced a number of challengesin beginning to provide a new identity and path forCFW which was formed through the merger ofICF(M)A and IACFA.

The merge of the two organisations has taken a lot ofeffort as, while we share a common goal of making lifebetter for those whose lives are affected by CF, theorganisations had different histories and cultures. It is atribute to the strength of the new organisation and thegood will of those who were involved with both organisations that CFW has developednew contacts and project areas.

We recognised that CFW needed to have a solid foundation and the Board made thechoice to invest in recruiting staff to work on the day-to-day issues and development of theorganization. Our major focus is on helping support countries where cystic fibrosis careis not available in any sustained/developed way. Our project manager Christine Noke hastaken the initiative for several projects, among them the project to develop a cystic fibrosisclinic in Tbilisi, Georgia and the Burke Bear campaign. With these projects CFW isseeking to develop a system that can be replicated and used in other countries to developbasic clinical care for CF.

One of the other positive changes we have made is to consolidate the financial matters aspart of the duties of our Office Manager, Gina Steenkamer. The treasurer still has overallcontrol of the organisation’s finances, with the record keeping and transactions managedthrough our office in The Netherlands. This has enabled us to improve our administrativeand control systems.

It is imperative for the new organisation to recruit dedicated and committed people tocontinue its development. In this context it becomes increasingly important for those whoseek a position on the Board to bring their skills and energy to developing new funding andproviding good governance. We have been lucky to have a Board made up of people whohave taken the CF cause to heart and seen us this far. It is now important that both theyand any new volunteers work even harder to guide us in the future.

CFW has become an essential factor in bringing national associations from all over theworld together to work on an international scale to improve the lives of those affected byCF. To do this we need to continue to receive the invaluable help of the many people whosupport our cause, our members, CF clinicians, health care professionals, corporations andgovernments worldwide.

I look forward to travelling with you on our journey.

Herman WeggenPresident

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The Project to bring changeWe begin our campaign with the ‘The Republic ofGeorgia,’ of the former Soviet Union, and the CF CharityFoundation of Georgia (CFG) in Tbilisi, as our PilotProject. CFW and the CFG will work in collaborationto develop sustainable advancements in the deliveryof clinical care, access to medication and the spreadof education in the treatment of CF in Georgia andsurrounding regions.

The situation in CF related care today in Georgia leavesCF patients with no CF clinical care or delayed service atbest and very rarely at the beginning stage. Most peoplewith CF are forced to try to seek care in foreign countriesat great financial and moral expense to their families.There are no training facilities for medical staff, amongparents, teachers and nurses of the patients. The basicantibiotics and pancreatic enzymes that most CF patientsrely on daily are nonexistent for people with CF inGeorgia. While the average life expectancy in developingcountries has moved to beyond 32 years, in Georgia theaverage life expectancy for CF patients is only 16.

The project will be completed through a series offive phases.

PHASE I: RENOVATION AND IMPLEMENTATION

March 2004

• An existing empty wing of the Children’s CentralHospital has been renovated to create 10 patient rooms,a physiotherapy center and diagnostic laboratoryequipped with basic start-up equipment and supplies.Amount secured: $93,000

PHASE II: EDUCATION AND EVALUATION

November 2004

• CFW will send a group of CF Specialized cliniciansto Georgia to train the future clinic staff andevaluate patient needs.

• A database will be created to build the GeorgianNational CF Registry.

• A Process Evaluation will be done to determineeffective import and distribution methods in thedelivery of free medication.

• Manuals will be created from appropriate educationalsources offered free at the Georgian National CF Centerin the national language.

PHASE III: DIAGNOSTIC IMPLEMENTATION

January 2005

• Using the data provided by the CF specialized teamin Phase II, CFW will equip the laboratory and traina technician in diagnostic procedures and optimalmicrobiology.

PHASE IV: MEDICATION AND ADAPTATION

June 2005

• CFW will negotiate access to necessary medicationsand technical equipment through established networksamong suppliers and Pharmaceutical organizations.

• An “outreach” program will be established by meansof creating a mobile clinic and dispensary operatedby the existing trained specialists (phase II) to travelthroughout Georgia. Collection for diagnosticdeterminations will be available as well educationalinformation and supplies to fill prescriptions of thediagnosed patients.

• CFW and the CFG will host the first annual educationalseminar in Tbilisi with both lay and medical topicsbeing covered. Local media, brochures and clinicalstaff will advertise this conference.

PHASE V: SUSTAINABILITY

January 2006

• CFW will send marketing specialists (2) to educatethe CF Foundation of Georgia on current philanthropicmethods such as grant writing, hosting events andbuilding corporate partnering programs. CFW willwork with the World Health Organization to continueto educate the Georgian government on the need tosupport those who suffer from CF in Georgia.

To track the effects this program has on people withCF and those who live and care for them, CFW andthe University of Maastricht will perform an outcomesevaluation beginning May 1, 2004.

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What is the outcome?Outcomes are benefits to clients who utilize the clinic,free medication and information Centre being developedin the Republic of Georgia. The evaluation will alsoinclude effects on families, the Children’s CentralHospital and the communities where people with CF live.Outcomes should not be confused with program outputsor units of services, e.g. the number of clients who visitthe clinic each month but instead focus on how the livesof those who do visit have changed. The managingmedical staff operating the Georgian CF Centre will alsobenefit from an outcomes evaluation that will tease outand define program strengths and weaknesses.

In developing health care systems there is a need to buildcapacity for the management of chronic disease such asCF from both health care and patient/family perspectivesto the needs of developing countries social and healthcare systems. Cystic Fibrosis is a genetic disease with afull range of chronic disease management componentsrepresenting the demands on family, health care systems,governments, communities and international resourceswhen implementing management models.

This program has two primary objectives. First theoutcomes evaluation is to provide regular, systematictracking of the extent to which program participantsexperience the benefits of changes intended. Bysuccessfully tracking the impact our program has onthe people with CF, CFW will communicate valueand increase effectiveness for improvingquantity and quality of life for people withCF globally.

The second primary objective is to develophealthcare infrastructure for the managementof CF in the Republic of Georgia and todisseminate the development plan to bothother chronic diseases and other developingcountries. The PhD student at the Universityof Maastricht Department of Health andEducation and Health Promotion will baseher work on the evaluation of the GeorgianNational CF Centre pilot project beingconducted by CF Worldwide.

To achieve these objectives, the University of Maastrichtand CFW have put together an evaluation team includingmembers from the CF Association in the Republic ofGeorgia, CFW board members and Project Manager,University of Maastricht Faculty and a PhD student.The PhD student is skilled in working in underprivilegedcountries and interested in developing further skills inprogram evaluation, capacity enhancement and modelsof chronic disease management.

The team will:

1. Evaluate the program process and outcomes of theGeorgian Cystic Fibrosis Centre Pilot Project.

2. Develop a capacity building and evaluationframework/manual for use by Cystic FibrosisWorldwide for the development and evaluation of cysticfibrosis management programs in developing countries.

3. Implement the capacity building and evaluationframework in two additional cystic fibrosis projectsin Latin America and the Middle East.

4. Analyze the lessons learned from the Cystic FibrosisWorldwide evaluation.

The evaluation capacity building program will beginApril 1, 2004 and is scheduled to be completed byApril 1, 2008.

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Cystic Fibrosis Worldwide and the University of Maastrichtwill work in collaboration to evaluate project development

for improved treatment in cystic fibrosis managementin developing countries.

Press Release 2004

Opening lines of communication...

CFW Website

CFW Forums

In February 2003, CFW was awarded an unrestrictededucational grant from Solvay Pharmaceuticals to developforums on our website that allow for the exchange ofinformation internationally. These forums are moderatedby a group of international specialists working in the fieldof CF from countries like the UK, US and Canada.

The goal of the CFW forums is to create a medium formedical professionals, caregivers and people with CF toask questions, find answers and build a platform for theexchange of information on an international level. Theseforums offer multi-language translation and we encourageall nationalities and age groups to utilize this resource.

CFW Library

The CFW online library allows user to search articlesfrom editions of IACFA and CFW newsletters. The LevyLecture, IPG/CF manual, annual reports and WHOguidelines are also available all searchable by title, author,subject with some articles translated into 6 languages!

CFW and our member associations

Cystic Fibrosis Worldwide is dedicated to promoting thedevelopment of CF lay organizations in underdevelopedparts of the world and to promoting the advancementof CF knowledge among medical / scientific and alliedhealth professionals. We offer links to all our membercountries and post the latest news and updates fromaround the world. For more information on joiningthe CFW’s growing member country list contact usat info@cfww.org.

CFW also hosts the International Physiotherapy Groupfor CF (IPG/CF) and the new CF Europe web pages.

Visit us online at www.cfww.org

CFW NewsletterThe CFW newsletter is offered in print (English) and onour website in several languages. The aim of the CFWnewsletter is to circulate information pertaining to CFand to create a platform for the exchange of informationglobally. The CFW newsletter is distributed to 62countries and over 4,000 readers worldwide. CFW isexpanding this number even further by making thenewsletter much more accessible via the Internet. CFWpublishes all newsletters online in languages such asEnglish, Spanish, Bulgarian, Georgian, Portuguese andArabic.

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“The presentation of your website is excellentand your articles are of great value and keep us

from getting discouraged.”

Dr. Miguel Angel Melendez, Costa Rica

Education

Grants and ScholarshipsCystic Fibrosis Worldwide offers grants to initiatives andeducational programs for work related to cystic fibrosis.The deadline for request is March 1 and September 1annually.

These grants are awarded to individuals who are workingin CF communities to improve the health care providedto people with CF.

In 2003 CFW approved grants to Dr. Gabriela Sabolovafrom the Slovak Republic to study dietary recommendationsfor individuals with CF and doctors in Uruguay, Hungaryand Brazil to study pharmacological treatments anddevelop research projects.

The grants available:

1. ScholarshipsThese will be for individuals working in the field ofclinical CF care wishing to improve their knowledgein a recognized CF centre worldwide.

2. Visiting ExpertsThese will be for highly qualified CF experts in orderto facilitate their travel and sojourn in CF centreswishing to improve their clinical or scientific expertise.

3. Research projectsThese will be for internationally relevant projectsof a globally applicable nature.

4. Training courses for allied health professionalThese grants will cover costs for courses both inthe applicant’s country and abroad.

Reports from applicants can be obtained through ouroffice at info@cfww.org.

ConferencesIn Belfast, Ireland CFW held a CF Lay conference inconjunction with the 26th European CF ConferenceJune 2003. CFW offered a program that included subjectssuch as Bacterial Infection and Treatment; UrinaryIncontinence in Women with CF and Talking to yourChild (with CF) about Life with CF.

The 2004 CFW Lay programme will be incorporated intothe UK Trust Biennial Conference at the 27th EuropeanCF conference in Birmingham, England. The conferenceis open to anyone with an interest in cystic fibrosis. Theprogramme will cover many aspects of CF, focusing onthe latest research and the best clinical care.

Solidarity FundTogether with the financial support of the National CFassociations, CFW has developed a solidarity fund.

This fund will be used to enable people from developingcountries representing CF patient associations and patientgroups, to attend the 27th European Cystic FibrosisConference in Birmingham in June 2004.

Birmingham will be the pilot project, but it is ourintention to provide the solidarity fund for futureconferences on an annual basis.

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“On behalf of all Slovak CF patients, thank you very muchfor the opportunity to gain experience, knowledge and

encouragement from all the staff at Götenborg CF Centre.”

Dr. Gabriela Sabolova, Slovak Republic

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Fundraising

Burke BearEach year on April 7th, the worldcelebrates World Health Day. Onthis day around the globe, thousands of events markthe importance of health for productive and happy lives.In 2003, the theme for World Health Day was “HealthyEnvironments for Children.” CFW took this opportunityto launch the Burke Bear Campaign.

In order to fund projects globally, we are reaching out toindividuals, corporations and friends of the CF communityasking that they join us in bringing Burke to the world tocreate an international campaign that positively affectsthose who suffer with CF globally.

Burke P. Bear was named after an incredibly spirited youngman, Burke Derr, who died of Cystic Fibrosis (CF) just twodays before his 19th birthday. Although his family in theUSA miss Burke terribly, they believe his spirit and legacylive on in this Boyd’s Limited Edition© Teddy Bear. Burkehas now joined forces with CFW in order to continue tofulfill the dream of a young man who wished to help allwho suffer with CF world wide.

For more information about the Burke Bear Campaign,please visit www.cfww.org or contact burke@cfww.org.

CFW Celebrity Golf Tournamentin Memory of Rick Weggen

Herman Weggen, President of CFW, is a member ofthe Heerensocieteit van Etten tot Leur, a gentlemen’ssociety that has been in existence for several years inthe Netherlands. This very enthusiastic group gatheredsupport through friends, associates and worked with aDutch organization, Charity and Sport, to organize agolf tournament on October 3, 2003.

A team of 3 people acted as the organizing committeefor the Golf Tournament, Frans Heyblom (a real estateagent), Gerard Hogeman (CEO of a theatre) andHerman Weggen (CEO of Avoord).

Thirteen flights were sold to local businesses. Each flighthad a special Dutch celebrity as their leader. At the endof this day, an appreciation-dinner was organized. Duringthis dinner the Project Manager, Christine Noke,explained the regional and clinical situation in Georgiaand Dr. Harry Heijerman gave a short speech explainingCystic Fibrosis. Euro 20,000 was raised during thisdaylong event.

The Heerensocieteit donated all the money raised toCFW for Phase I: Renovation and Implementation.

The Heerensocieteit has agreed to continue to supportCFW by holding an annual CFW Celebrity GolfTournament in Etten Leur.

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“Heerensocieteit has agreed to partnerwith CFW in hosting the

CFW Annual Charity Golf Fundraiser.”

CFW Press Release, February 2, 2004

“The Canadian Foundation is grateful to bea part of a dynamic international community and

a proud member of CFW.”

Cathleen Morrison, CEO, Canadian CF Foundation

Member CountriesCFW proudly lists our many member countries andassociate members.

Corporate SponsorsCFW has developed relationships with our corporatesponsors that will allow us to work towards fulfilling ourmission. Our corporate funders share the same vision asCFW and our member countries. That vision is a worldwhere all people who suffer from CF have access toclinical care, medication and information in the treatmentof CF no matter where they live.

ICCO and Wilde Ganzen recently awarded euro 40,000to begin construction on the Georgian National CF Centre.ICCO and Wilde Ganzen have a strategic alliance and bothorganizations try to provide finances and expertise forprojects and programmes that stimulates people to create ajust and safe living environment for themselves and others.

Van Aarle De Laat Health Sector ConstructionManagement Services donate all office facilities andpart of the salary of the office administrator. Thisgenerous donation allows us to perform as a moreprofessional organized constitution. Van Aarle De Laatwill continue to support our administrative costs for theNetherlands CFW office through 2004.

Solvay Pharmaceutical recently awarded CFW with anunrestricted educational grant for the development of theGastroenterology/Nutrition forums on our website.Solvay has also contributed to the CFW newsletter andoffered support to CFW in our efforts to put PancreaticEnzyme on the WHO essential drug list. Solvay’scontributions have made it possible for the CFW to carryout our mission of creating a platform for the exchange ofinformation worldwide.

Micronics Inc. is our newest corporate sponsor providingtravel expenses for fundraising and administrative costs.We look forward to future fundraising activities withMicronics Inc.

If you would like to learn more about our sponsorsand member countries, please visit our website atwww.cfww.org. If you are interested in obtaininginformation about becoming a sponsor or applyingfor membership email us at info@cfww.org

...because together we can make a difference.

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ArgentinaAustraliaAustriaBelgiumBrazilBulgariaCanadaChileColombiaCosta RicaCubaCzech RepDenmarkEcuadorEl SalvadorFranceGermanyGreeceHungaryIcelandIrelandIsraelItalyLatviaLithuaniaMexicoNetherlandsNew ZealandNorwayPanamaPoland

PortugalRomaniaSlovak RepublicSouth AfricaSpainSwedenSwitzerlandTurkeyUnited KingdomUnited StatesUruguayVenezuela

Associate MembersAzerbaijan RepublicBahrainDominican RepublicEgyptEstoniaFinlandGeorgiaGuatemalaIndiaJordanLuxembourgMacedoniaParaguayQatarRussiaSaudi Arabia

Statement of OperationsFigures shown in actual USD

2003 USD

REVENUEMembership fees 58,951

Donations• Private 12,000• Corporate 11,424

Subscriptions 3,640

Burke Bear Campaign 2,902

Grants 16,195

105,112

EXPENSESProgram expensesCFW Newsletter 15,000CFW Website 2,138

Conferences 17,180Projects 54,033Grants 7,436

95,787otherAdministration 21,895Fundraising 7,558

125,240

Excess of expenses over revenue (20,128)

Statement of Financial Position

December 31, 2003 USD

ASSETSCurrent Assets:

Cash on hand 212,301Investments (stock) 1,265

Receivables and other assets 2,034

Total Assets 215,600

Capital 234,087(*deficit financial year) (27,335)

206,752

CURRENT LIABILITIES:Accounts payables 3,555Other payables and accrued expenses 5,293

8,848

TOTAL CAPITAL AND LIABILITIES 215,600

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Programs Administrative Fundraising

17%

77%

6%

* Loss on Currency Exchange <7,207>Funds received pursuant to the merger of twopredecessor organizations, International Cystic Fibrosis(Mucoviscidosis) Association (ICF(M)A) and theInternational Cystic Fibrosis Adults (IACFA), weretransferred to the new corporation Cystic Fibrosis Worldwide.

PresidentMr. Herman J. WeggenHalderbergselaan 54741 AA HOEVENNETHERLANDSpresident@cfww.org

Vice-PresidentMr. Enrique SilverMarne 3389 11600MontevideoURUGUAYesilver@netgate.com.uy

Vice-PresidentMrs. Inge-Britt LundinUpplandsgatan 4911328 Stockholm SWEDENinge-britt.lundin@sll.se

Vice-PresidentDavid StickelsCystic Fibrosis Trust11 London RoadBromley Kent BR 1 BYUNITED KINGDOMtel: 00.44.208.464.7211fax: 00.44.20.8313.0472dstickels@cftrust.org.uk

TreasurerMr. Mitch MesserExecutive DirectorPO Box 959 Nedlands WA 6909AUSTRALIAm.messer@cfww.org

Administratorinfo@cfww.org

Project ManagerMs. Christine Noke 56 Central Street Hudson MA 01749UNITED STATEStel: 508.733.6120fax: 978.562.4108cnoke@cfww.org

Web related Questionswebmaster@cfww.org

Subscription informationsubscriptions@cfww.org

Newsletter editor/Communicationseditor@cfww.org

CFW Member Countries

Cystic Fibrosis Worldwide is a non Governmental Organization (NGO) in official relationwith the World Health Organization