About our board members
Want to know a little more about the people behind this website? We’ve got you!
Let’s Cure ACC was established by two French women as a registered non-profit association in France in 2021: Catherine, who has been living in the US since 2003, and Sandra, residing in France. Their paths crossed via an ACC patient group on Facebook, where they instantly formed a connection. They shared the same feeling: for all ACC patients, dealing with a rare disease is already very difficult, but when there is no help or information to help you understand what happens, the situation becomes unbearable. Facing this situation, Catherine and Sandra wanted to help all ACC patients, their relatives and caregivers by providing on an international scale, trustful information in multiple languages.
Other people affected by the disease have the same feelings, so Let’s Cure ACC is open to expand. Each new individual joining our board introduces fresh perspectives and valuable skills to the association.
What are the chances of encountering people from such diverse lives – differing in age, country of origin, and more – with whom you can forge an effortless connection? Through ACC, we’ve cultivated not just a strong, genuine friendship but also a shared mission: to assist patients around the globe.
CATHERINE
Catherine was born in 1968 and currently lives on Long Island, NY, USA. A mother of 3 adult boys, she worked many years in marketing for LVMH before working on bi-cultural education (BAYARD Presse – translations – virtual French class).
She almost diagnosed herself with Cushing Syndrome (right adrenal mass of 7 cm) in July 2018 (Happy 50th birthday). – but 10 days after surgery, this was sadly redefined as ACC… Three months later her left adrenal was removed too, by her own choice (and on the advice of her medical team), after it showed some suspicious symptoms (probably precancerous). So no more adrenal glands! But she is living happily with a few simple changes in her life (lots of medications including Lysodren and many medical follow-ups!).
SANDRA
Sandra is thirty something (but she will always say she is 28!) living in Paris (France).
Working as Project Director in the digital world, she is geeky, loves video games, heroic fantasy, SF and music (did you hear about this woman called Taylor Swift?!) including Japanese music (please listen to Miyavi!). She is also into everything that is called lifestyle and always on top of trends (except for the fashion one – no sense of fashion in those NED cells). Diagnosed with ACC in 2018, she had dealt with undiagnosed Cushing Syndrome for about 2 years. By the time it was diagnosed, a 10 cm tumor was found on her right adrenal gland with an invasion in the vena cava. Surgery and Mitotane was next. It was a complicated one and since then she has also had neuropathic pain to deal with – but life must go on, right!
MARC
Marc was born in 1972 in Germany and now lives near Oldenburg, Lower Saxony, after spending over 20 years in Switzerland. He supports Let’s Cure ACC as a member of the board since 2024.
Holding a PhD in Economics, he looks back on a dynamic career, having worked globally in various roles for banks such as NordLB, Deutsche Bank, and UBS, and for the Swiss IT company Finnova. Since the age of 12, sports have been a focal point for him, starting with athletics and later becoming a dedicated competitive cross-country skier, participating in national and international competitions.
In 2017, his life hit a major roadblock: he was diagnosed with ACC, featuring a 20cm tumor, followed by resection, four cycles of chemotherapy, and the initiation of Lysodren therapy (mitotane). In 2019, Marc survived two liver recurrences with six cycles of chemotherapy and another two resections, the last one in January 2020. Today, he feels immense gratitude for a life full of experiences and the prospect of adding a few more chapters to it. You can follow Marc on Instagram and Facebook.
We had the opportunity to attend the ACC symposium 2019 together with ACC experts around the world . We unanimously got their support for the creation of an International Patient Association, to build a community that would be a great help for medical experts in offering patients better care.
We think that it is time NOW that ACC patients around the world to get together and be more unified to help medical experts, raise awareness and get answers. So we can speak as one.
