The activities of the foundation are coordinated and carried out by the Core team, which consists of 12 people, including the board. The Core team acts as an extended Board. They define the strategy and operational plans, set and manage standards for fundraising and research (contracts and contract management), drive communications and PR within and beyond the OI community, manage the financials and compliance, manage projects, develop relationships with funding institutions, support volunteers and manage the annual research proposal rounds.
The Core team consists of highly skilled and motivated professionals from the following sectors: IT, Finance, Fundraising, Communications & PR and Learning/Capability Building. They all have significant experience working internationally and across different cultures. The Core team comprises nationals of Cyprus, Estonia, Germany, Austria/Romania and The Netherlands. They meet virtually on a monthly basis to discuss all matters concerning the foundation. The Core team also has formed various subcommittees to put the plan into actions, measure effectiveness and capture learnings continuously.
Finance: Dirk-Jan Stegink, Robert Brabander
Fundraising: Nicklas Teicke
Communications: Dorina Tamas
IT / Knowledge Management: Henk Latour, Kees Mezouar
Research: Lidiia Zhytnik, Dagmar Mekking, Lieke Mekking
OI Community Relationships: Andreas Matsangos, Dagmar Mekking
The Foundation was founded in 2012 by Dagmar and Peter M. Mekking and their friend Jacqueline Hornman-Huberts.
Vanja Zivkovic
President
Vanja was born in Serbia and moved to Switzerland as a teenager. She studied medicine and was Swiss delegate for OIFE for about 8 years. After her studies she specialized in pediatrics and worked for many years in the University Hospital of Zurich in the field of intensive care for children. Since July 2022 she is working as head of the pediatric department at the Hospital of Winterthur in Switzerland. Her hobbies are traveling, bookbinding and reading. She has a deep interest and experience in science and healthcare and very much enjoys working with Care4BrittleBones to support quality of life of people with OI around the world.
Dirk-Jan Stegink
Treasurer
DJ studied International Relations in Groningen and holds a Registered Controller’s degree from the VU Amsterdam. Since his graduation he has been working in financial and strategic roles in the energy sector. He lives in Rotterdam with his wife and two young children. He struggles to find time for hobbies like cycling, field hockey, scuba diving and skiing and is happy there are digital solutions for staying informed on his interest in education and international relations.
He is passionate about bringing positive change in his work and life and jumped at the opportunity to be part of C4BB mission to improve the quality of life for people with OI through research. “The only way to make a step change in research into a rare decease like OI is to work on a global scale and I immediately liked the way C4BB is pushing and supporting this. I am the only person on the board of Care4BrittleBones without a personal link with OI. My role in the Foundation is to make sure we accomplish the goals of the foundation fully compliant with rules of good governance appropriate for the charitable sector, provide transparency on our financial accounts and operate efficiently and effectively overall.”
Celine Disch
Board Member
Celine Marlies Disch her career path started in fashion, but since 2 years she has her own company in sustainable superfoods & supplements. Since June 2017 her Osteogenesis Imperfecta has been diagnosed genetically. Through her mother she came into contact with Dagmar (CEO Care4BrittleBones) and from that moment onwards she has been committed to the foundation. Her passion and drive within her Talent Role have brought her to a place on the board, focused on communication. “I am honored to be part of the board of this great foundation. My goal within this position is to create awareness and try to make a difference for everyone with OI. ”
Email: celine.disch@care4brittlebones.org
Lidiia Zhytnik
Board Member
Lidiia Zhytnik was diagnosed with OI in childhood. It led her to study genetics and continue a career in OI research. A special area of interest for her is OI genetics and therapy development. Currently she is a postdoctoral research fellow at the Amsterdam UMC, VUmc and a researcher at the University of Tartu, Estonia. Together with colleagues she develop novel therapies for mild and severe OI.
Being an OI researcher and having OI herself, she aims to improve quality of life for OI people by research and bridging the collaboration between professionals and patient community. “Nothing about us without us”, she says.
Nicklas Teicke
Board Member
Nicklas Teicke has a son, who was diagnosed with OI. He is living in Berlin /Germany. He is highly motivated to use his professional and personal experience to make a difference for everyone living with OI. Research is the game changer for Quality of Life for everyone with OI, if we work together across researchers, medical professionals and people with OI.
Dagmar Mekking
CEO
Dr. Dagmar Mekking has a background in law and has 15 years of experience as an HR Manager with a large Multinational. She has been the Chairman of the foundation since she founded it in 2012. Since 2017 she is the CEO of the Foundation. She has 3 children. She did not know of the existence of OI until she got had her third child in 2006. This was the reason for her to delve with her heart and soul into the possibilities to improve the quality of life of people with OI. “Sometimes you have to deal with a change in your life, that touches your life deeply. For us, that was the arrival of a child with OI. It took a while, to understand what it means to have a child with OI. By now we have found our way. We have a strong network in the medical world and the (international) OI world and we know: there is so much to improve. Progress in the medical world is huge. Through fundraising we can make these techniques accessible for the rare disease of OI. “I am keen to do anything I personally can to improve the quality of life of people with OI. Anything!”
In addition to these six permanent board members, there are a number of people who belong to the so-called “core team“. That core team meets 10 times a year to discuss progress and to go through the action points.
Andreas Matsangos
Core-team member
I started as a chairman of the Care4BrittleBones Foundation in 2021. I have been working in the HR and Business Consulting areas for the last 8 years, in local and multinational companies in Cyprus. Recently I started as a Finance Executive at the State Health Services Organization of Cyprus. I was the chairman of the Care4BrittleBones Foundation from 2021 – 2023 and are still part on the Coreteam today, now Vanja has taken over the Presency.
Born with OI in the 1980’s in Cyprus I really felt what it is to have no information about OI and no doctors that have experience with it. I started to look internationally and quickly found out that sharing information with each other and really engaging about the information makes such a difference. More than five years ago I started to become interested in research for OI and the possibility of improve quality of life for everyone with OI through scientific advancement. Care4BrittleBones stands for what I believe in: we need to have a multidisciplinary approach to healthcare for OI, we need to enable better therapies and we need to work together across the “universe of OI”. Since my first meetings with fellow OI’ers I learned a lot from the different perspectives of others. I look at my life with OI differently today and I happy to contribute to the best possible future for everyone with OI.
Peter Mekking
Core-team member
In 2012, Dagmar and I founded the Care4BrittleBones Foundation. In 2006 our daughter was born who turned out to have Osteogenesis Imperfecta. Quickly we found that there were so many unknowns about this condition. Each country has its own protocol regarding operations (with regard to ‘rods’ for example) and with regard to medication in the form of bisphosphonates. Little research was done because of the too small size of the population and lack of financial resources. When our daughter broke her neck we decided to take action. Something had to be done about it. The plan to establish Care4BrittleBones was born with that in mind: “Stop standing at the side lane, but try to improve the situation”
Lieke Mekking
Core-team member
My name is Lieke Mekking. I have two healthy adult children that I am very happy with. I am Peter’s sister and I have seen closely how many concerns you can have as a parent if your child is not healthy. I am also greatly impressed by what Peter and Dagmar have achieved with the Care4BrittleBones foundation and the vision and ambition to not only raise more money for scientific research but also to bring the experts together at an international level. “I would like to contribute to that”
E-mail: lieke.mekking@care4brittlebones.org