Care4BrittleBones aims to improve the quality of life of people with Brittle Bones Disease

Core team

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, Ireland, Poland, The Netherlands, UK and USA. They meet face-to-face 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, Iwona Juzwa-Parfus

Fundraising: Dagmar Mekking, Lieke Mekking

Communications: Amy Hassett, Celine Disch

IT / Knowledge Management: Henk Latour, Kees Mezouar

Research: Lida Zhytnik, Dagmar Mekking, Lieke Mekking, Graham Marshall

OI Community Relationships: Andreas Matsangos, Beth Jacks, Dagmar Mekking

The Foundation was founded in 2012 by Dagmar and Peter M. Mekking and their friend Jacqueline Hornman-Huberts.

Andreas Matsangos
Chairman

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.

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.

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 Communications

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

My name is Lidiia Zhytnik. I was diagnosed with OI in childhood. It led me to study genetics and continue career in OI research. Special area of my interest is OI genetics and therapy development. Currently I am a postdoctoral research fellow at the Amsterdam UMC, VUmc and a researcher at the University of Tartu, Estonia. Together with colleagues we develop novel therapies for mild and severe OI.

Being an OI researcher and having OI myself, I aim to improve quality of life for OI people by research and bridging the collaboration between professionals and patient community. “Nothing about us without us”.

Image of Amy Hassett. Black and white photo wherein Amy is smiling at the camera wearing a shirt with dots on it and is sitting at a table in a restaraunt

Amy Hassett
Board Member

My name is Amy Hassett. I have type IV OI, which was diagnosed before I was born. My interest and motivation in supporting research into OI stems not only from my own personal experience with OI, but also from an awareness that the quality of life of people with OI can differ v]greatly depending on where a person is born. I was lucky enough to have been born in Ireland, around the time when the internet started to become more commonplace. Because of these factors, my parents were able to access information and support, and early interventions were taken to guarantee me the best possible quality of life for someone with my condition. I recognise that other people with OI across the globe, and indeed, even within our own countries or within Europe are not so lucky. I am motivated to support further research into OI, with a particular focus on interventions and research that can bring the most benefit to the broadest range of people with OI. I have a background in Human Biology and Neuroscience and so also want to bring my experience as a researcher to the table.

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, Sophie. 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!”

E-mail: dagmar.mekking@care4brittlebones.org

In addition to these four 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.

Peter Mekking
Core-team member

In 2012, Dagmar and I founded the Care4BrittleBones Foundation. In 2006 our daughter Sophie 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 Sophie 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”

E-mail: peter.mekking@care4brittlebones.org

Lieke Mekking
Core-team member

Graham Marshall
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

 

 

Graham Marshall is the parent of a child with Brittle Bone Disease and over the years has witnessed first-hand the positive impact that treatment and technology has on his daughter’s quality of life. He believes passionately that ongoing research approached in a collaborative way is fundamental to unlocking future advances in care and cure. Graham has previously served on the Board of other medical foundations including one of the UK’s leading Air Ambulance charities where he was also Chairman of the Operations Committee. He has lived and worked around the world during his career in a variety of commercial and corporate roles. “Nothing is more important to me than improving the life of my daughter and others like her”

E-mail: graham.marshall@care4brittlebones.org

To find our more about the remuneration policy of Care4BrittleBones, please click here.