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 Germany, Latvia, Poland, The Netherlands, UK. 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, Piet van Erk, Iwona Juzwa-Parfus
Fundraising: Graham Marshall, Dagmar Mekking, Lieke Mekking, Ambika Lucassen, Celine Disch
Communications: Celine Disch, Annet Snoek, Ariel Slaughter, Chaya Mistry, Aleksandra Wrobel, Lieke Mekking, Ilse Balvert
IT / Knowledge Management: Peter Kemper
Research / OI-Community: Graham Marshall, Dagmar Mekking, Lieke Mekking, Sigita Zideluna, Celine Disch
The Foundation was founded in 2012 by Dagmar and Peter M. Mekking and their friend Jacqueline Hornman-Huberts.
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!”
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”
More information will follow soon…
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. ”
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.
Piet van Erk
Piet van Erk is married to Julia and proud father of two grown children, Mieke and Rens. He worked as Finance Manager at an international oil and gas company. Through his colleague Dagmar he came into contact with OI and was immediately touched by the enthusiasm of the foundation’s board to commit doing something about the far-reaching impact of this disease on children, adults and their immediate surroundings. “It’s a wonderful challenge to make a contribution together.”
Aleksandra is a finance professional with 15 years of experience in a multinational company and currently CFO at a technical startup company. She is also a professional coach for leadership development. She came across the brittle bones disease through a colleague, Dagmar. Ever since she’s been truly impressed with the willpower of people working with the Care4BrittleBones foundation. Aleksandra joined the foundation to contribute to the efforts on research towards improvement of the quality of life of people living with OI and, truly, to learn life lessons from the community. “The unbreakable spirit of people who live with OI – children and adults – is absolutely amazing and deeply inspiring. We – certainly I – can learn so much from them”
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”
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”
“I still enjoy being an adult, being much more than a child, because as an adult I can make my own choices and follow my heart.” I followed my heart to the Netherlands and met these incredibly determined and professional people who fouled the idea of non-curable Osteogenesis Imperfecta Their energy and drive are positively addictive As part of the Care4BrittleBones team, I sincerely believe that we already make a difference in the OI community. The unfairness of being failed by you my own body reminded me how much luck I have to be able to make a choice to give me time, energy and knowledge to help people affected by OI, and that’s what I’m doing “