Cystic Fibrosis Worldwide (CFW) is a non-profit organization which has its registered office in Massachusetts, USA . CFW is dedicated to improving quality of life and life expectancy for people living with cystic fibrosis (CF), a genetic life-threatening disease. Cystic Fibrosis Worldwide began our mission to aid people born with cystic fibrosis in 2002. Since our inception we have reached out globally focusing on developing countries and countries where little is known about CF. This has led a path across the globe reaching people in countries such as Oman, Palestine, India, Armenia, Macedonia and Brazil to name a few.

CFW enables access to knowledge and appropriate care to those people living with CF and among medical professionals and governments worldwide focusing on countries where local health systems are limited in the support they can provide.

CF Worldwide works to bring long term solutions via Educational conferences, Capacity building programs, Clinical development, international lobbying efforts and by creating a global network. We continue to reach higher and work harder in efforts to aid people born with CF now living without access to necessary medication, treatment or equipment. We work against time, we work with a dedicated effort and we work to win the battle. Join CFW by donating to our programs and lets win this fight together!


Our Leadership

Mr. Terry StewartMr. Terry Stewart
Board President and CEO of Cystic Fibrosis Worldwide
Terry is the former Chief Executive Officer and Company Secretary, Cystic Fibrosis Australia, Chairman of Cystic Fibrosis Australian Data Registry Committee and Cystic Fibrosis Clinical Directors Meetings, Executive Position on all Australasian Cystic Fibrosis Conference Committees. Administrator – Australian Cystic Fibrosis Research Trust. With an open mind on expanding and leading CFW into areas where CF has limited professional approach to improving the lives of people with Cystic Fibrosis.  Terry founded and ran successful businesses in areas of engineering and property development and brings together a broad wealth of business experience.

2015 Letter from the President – 5/24/2016

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Mitch MesserMr. Mitch Messer
Board President and Treasurer of Cystic Fibrosis Worldwide
Mitch is an experienced executive, who has served in senior leadership roles as a Chief Executive Officer (CEO) and Board member for a number of organizations over many years. He is a past President of CF Worldwide and currently Community Involvement Coordinator at Telethon Kids Institute in Western Australia and Consumer Advisor for BEAT CF, a team aiming to optimise the medical management of cystic fibrosis lung exacerbations. As a consumer advocate, with more than 40 years’ experience, Mitch is passionate in his belief that we can only truly drive improved health outcomes by ensuring health systems have a consumer focused culture. He believes that CF Worldwide plays an important role in helping to spread knowledge about CF and to finding ways to support and empower people facing the daily challenge of living with CF, especially in parts of the world that do not have the benefit of comprehensive CF care.
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Dr. Horst MehlDr. Horst Mehl
Board Member of CF Worldwide, Father of a boy who suffers from CF
Honorary President and Board Member of CF Association Germany, Mukoviszidose e.V.
Member of German CF Research Group
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Cody Sheehan, MIMLCody Sheehan, MIML
Board Member of CF Worldwide
Hi, I’m Cody Sheehan. I’m a CF- Double Delta who had a Lung/ Liver Transplant in 2017. I’m 32, live in Sydney, have dual citizenship (AUS/US)
I went to Steiner Schools through your 12 and did 2 Diplomas in Management and HR at college. I have many interests including coffee, dance, film, television, people, psychology, social media, marketing, business, investment and entertainment.
I have done lots within the CF community including multiple awareness and fundraising events each year for the last 15 years.
This has looked like: Gala Balls, Great Strides, The 65k 4 65 Roses Walkathon, A Night For CF, 65 Roses Day, Crazy Hair Day, The Breathe Life Ball, and 65 Roses High Tea to name a few. 10 years ago I also founded the International team: The CF Avengers. We have personnel across the globe in Australia, US, the UK, New Zealand, and South Africa and constantly looking to expand. If you see a tall person in a Capt. American suit, it’s usually me!

I thoroughly enjoy public speaking and use it as both a business tool and for fundraising in sharing my story. I’ve sat on Boards in VP and Treasury positions- in both CF and non-related NFP’s. More recently I’ve engaged in activities for hospitals (St Vincents with an award-winning anti-smoking campaign), AHLTA (Australian Heart Lung Transplant Association), and Donate Life to help spread organ donor registrations. I have very recently been elected to the AHLTA Board in the position of Vice President.
I’m a big people person! I enjoy learning about people’s “IKIGAI” (Japanese for “your reason for being”) which I have a tattoo of! A lot of my Ikigai is helping people to not only reach their fullest potential but to bring value that I know only I can bring. This is almost a life and business philosophy in some way I suppose.
Dad has finished and released his fourth and latest book: Breathing Through A Straw. It’s his memoir about my life through his eyes. Subsequently, I am in the process of writing the unofficial sequel to his, but from my first-person perspective.

My interest in CFW is on a different level from any other state-based or national organisation. Why? Because it’s looking at the whole CF world. All the countries have a suffering CF population. That in itself absolutely fascinates me. There are countries that I would never guess have a CF population and seem to be in enormous need of help, resources, and guidance. In understanding that gap, I immediately see where my knowledge, skills and much-lived experience will only be an invaluable asset to CFW. The potential has no bounds.

Every CF association’s purpose is to be “of service” and to work “for” those who suffer on a daily basis just trying to breathe and survive. For the countries that don’t have access to the proper health care, that’s where CFW can hopefully help. I’m hoping to be an enormous part of that mission, and journey

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Natalia BouslovaNatalia Bouslova
Board Member of CF Worldwide
I first learnt about CF when my niece who lives with my sister and her family in Kazakhstan was diagnosed with CF. The quality of life and life expectancy of children with CF in Kazakhstan are very poor, most die before reaching adulthood. It was a devastating news for my sister. I did a lot of research and found out that thanks to advancements in treatment, people with CF in developed countries live till their 40-ies and the life expectancy continues to grow. I have also learnt about CFW and their work around the world helping CF communities in developing countries to setup proper standards of care. My sister setup CF parent organization in Kazakhstan and thanks to CFW we have organized training of over 100 doctors in the country as well as a dedicated CF physiotherapy training for physiotherapists, got commitment from the government to open CF clinics and ensured supply of live saving antibiotics. My business background in strategy and change management gained across multiple industries, most recently in financial services, came handy in transforming CF situation in Kazakhstan and I look forward to continue supporting CF communities now as a member of CFW.
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Przemysław MarszałekPrzemysław Marszałek
Board Member of CF Worldwide
My name is Przemek Marszałek (Marshal) I come from Poland. I am 39 years old and have 2 daughters Alice (9); and Julia (10) with CF. Due to my professional background, for 15 years I am a IT manager. For each family, the first months after the diagnosis are very difficult. My family was lucky enough to be taken care of by the Matio Foundation. Soon I became involved in the foundation’s activities and in 2012 I became a volunteer. Since 2015, I have the honor to be a member of the board of the Matio Foundation. In 2016 in Basel, for the first time I had the pleasure of meeting the European family of CF (CF Europe). I was extremely surprised how people from different countries and cultures can unite in the face of common problems. Since that time, I’ve made many great friends. Now we have 2022 and I would like to be even more involved in the work for our World CF family.
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Brigitte StaehleBrigitte Staehle
Board Member of CF Worldwide
My name is Brigitte Stähle. I am 67 and German. I live and work in Stuttgart, Germany.

I have three children. My youngest daughter has Cystic Fibrosis. At the age of 37 she works full time and leads an independent and self-determined life.

Only when my daughter started school, I was able to justify going back to work. I worked as a project manager at “Bread for the World” and at the “Robert Bosch Foundation”. At the foundation, I was responsible for the programs “Dementia” and “Life in Old Age”.

Since my retirement at the end of 2020, I have continued to work in the field of “Dementia” on a freelance basis at the Robert Bosch Foundation and, since 2021, at the foundation Porticus.

For almost 37 years, since the birth of my daughter, I have been volunteering for people with Cystic Fibrosis and for people with rare chronic diseases, regionally and nationwide.

In the following, I will give you an overview of my volunteer work:

  • I am a member of the CF Association Germany (Mukoviszidose e.V.) and the spokesperson for 33 German Cystic Fibrosis self-help groups and associations.
  • I am active as a patient representative for Cystic Fibrosis at 2 large hospitals in Stuttgart.
  • I work as a patient representative in various committees and advisory boards in Baden-Württemberg, which is one of the 16 German states of the Federal Republic of Germany. In the Federal Joint Committee (G-BA), which is a public legal entity comprising the four leading umbrella organizations of the self-governing German healthcare system, I represent the patients’ interests in the demand planning. Demand planning is an instrument for ensuring that insured persons have equal access to primary care and specialist care in line with their needs.
  • I am a member and represent the interests of chronically ill people (especially rare diseases) in the Stuttgart Council of People with Disabilities and in the Baden-Württemberg Council of People with Disabilities.
  • I am a board member of the “Landesarbeitsgemeinschaft Selbsthilfe Baden-Württemberg”, the umbrella organization of currently 56 self-help associations of disabled and chronically ill people and their relatives in Baden-Württemberg with more than 60.000 members. The NGO bundles the interests in health and social policy as well as in politics for people with disabilities.
  • I work as an auditor in the certification process for 40 Cystic Fibrosis facilities and for the 35 Rare Disease Centres in Germany..
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Sunayana Ammani Thorpe-BeestonSunayana Ammani Thorpe-Beeston
Board Member of CF Worldwide
My name is Sunayana Ammani Thorpe-Beeston.  Read my Curriculum Vitae here.

Cystic Fibrosis Worldwide Education Team

Dr. Harry Heijerman
Chief Medical Advisor to CF Worldwide and Board Member
Dr. Harry HeijermanConsultant Adult Pulmonology Department of Medicine, Founding member of the European CF Society, Editor of the CF Journal and Director of the Hague Teaching Hospital – Netherlands
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Dr. Ian Balfour-Lynn
Consultant
Dr. Ian Balfour-LynnCF Worldwide Medical Advisors and Education Team
Paediatric Respiratory Medicine
Royal Brompton Hospital, England
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Dr. Anne Munck
Director
Dr. Anne MunckPediatric Gastroenterology
Director of Pediatric CF Center
Paris member of European CF Society
Executive Board of Directors France
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Ms. Sue Wolfe
Chief Pediatric Dietitian
Ms. Sue WolfeRegional Paediatric Cystic Fibrosis Unit
Leeds General Infirmary, England
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Mrs. Alison Morton
Clinical Specialist Dietitian
Alison Morton
Alison Morton Bsc (Hons) SRD
Leeds General Infirmary, England
Leeds Adult Cystic Fibrosis Centre
Joint Chair Cystic Fibrosis Interest Group
Committee member of the European Cystic Fibrosis Nutrition Group
Member of the European Cystic Fibrosis Society and a member of the Scientific Planning Committee for the European Cystic Fibrosis Conference
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Dr. Susan Madge
Consultant Nurse
Dr. Susan MadgeDepartment of Nursing Royal Brompton Hospital United Kingdom
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Mrs. Louise Lannefors
Physiotherapist
Louise LanneforsFounding member of the International Physiotherapy group for CF (IPGCF)- Sweden
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