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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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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