About Us

2015 Letter from the President – 5/24/2016

Cody Sheehan, MIML

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

Brigitte Staehle

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..