Care4BrittleBones is heavily relying on so called ‘ambassadors’ for OI Research’ and we are incredibly proud of them! Our ambassadors are usually people with OI or family/friends of people with OI. They are supporting Care4BrittleBones in 4 ways:
Our heartfelt thanks to all of our amazing ambassadors!
“As a mother of a child with Brittle Bones, I am very keenly interested in finding ways to improve the situation that people with OI find themselves in currently. We want them to live a life free of pain, independent and happy… free of fear of new fractures and all the frustrations that come with repeatedly being derailed through a new incident. We wish them joy and lightness, even though they have had a very difficult childhood. I am keen to learn more about the potential of new therapies being developed and which treatment in the future may enable people with OI to live without fractures.”
“We are the proud parents of two boys: Stijn (8) and Tibbe (6). At the age of two Stijn had a serious fracture, and we discovered that he had OI – the only one in our family. We have spent the last six years discovering how difficult it is for Stijn, and for us as parents to live with it. Each form is different and no one can predict what the future will look like for every patient. When we heard about the Care4BrittleBones foundation we immediately decided to become part of it. It is important that physicians around the world share their knowledge and conduct joint research. We hope that the information for other parents and people with OI will become a lot clearer and brighter.”
Annemarie Visser & Kris Koenis
“I am an ambassador for Care4BrittleBones because I have lived 28 years with Osteogenesis Imperfecta. Surprisingly, in those 28 years very few improvements in medication or treatment for people with OI have been achieved. However the medical world does not stand still, there are many new developments! But why does it not happen with OI? Could it be because of a considerably low number of patients? Surely this cannot not be the reason to turn our back on it. Perhaps the issue is a lack of money? That must be the problem! And here we can do something about it. For a long time I was looking for ways to help the people with OI. Therefore I have participated in television programs, shining some more light on the disease. Unfortunately, it did not help me solve any problems or collect funds for research. That’s when I heard about the initiative of Dagmar and Peter and got excited. I joined the foundation to be able to contribute to raising money and enable more research for OI.”
Danielle de Bakker
“I’m Diana Lips, I am 40 years old and live with my partner Johan Peemen. Together we have a fantastic daughter Amber (6) who has Osteogenesis Imperfecta type III. Amber already has 6 fractions (3 on her thighs and 3 on her upper arms). Both of us parents have mild forms of OI as well. I would like to devote myself to the Care4BrittleBones cause and work in cooperation with others to ensure that there is more research into this disease for a better future for people with OI and of course our wonderful daughter Amber!”
My name is Erik Meinen, married to Jellie Meinen and father of Sara Avelin Meinen and the twins Remco and Stefan Meinen. My daughter Sara Avelin has Osteogenesis Imperfecta type III. I would like to dedicate myself to the Care4BrittleBones Foundation. Partly due I hope that we will be able to support my efforts with good research with which we can bring the Osteogenesis Imperfecta disease to a halt.
Hi, I’m Harry Vondenhoff. After some unusual fractures to arms and legs physician diagnosed in 1968 that I have OI, Osteogenesis imperfecta. After many investigations, surgeries, lack of understanding and more fractures they even found the gene that explains many of my health issues, OI-PLS3. A lot has been done to understand and find solutions for OI, but it is not enough and improvements are possible. Together with others I would like to emphasize that it is important to focus on the human being and his/her potential above everything else. Keep moving and never give up!
“I’m married to Wijnand, and together we have two children: Daan (11) and Stijn (9). and a dog called Joe. We live in Wesepe, a small village in the heart of Overijssel. Stijn has Osteogenesis Imperfecta Type III. I became part of Care4BrittleBones foundation because it is extremely important that the money raised goes to research. We know exactly what pain, sorrow and misery this disease can bring. Stijn’s bones are often broken, which is always followed by a lot of pain. At this young age he has had several operations, and as parents we stand back powerless every time. The only thing you can do is to comfort your child and be there for him. We are part of the foundation in order to contribute to the improvement the quality of life for all people with the brittle bones disease.”
I am Irma van der Hoek, married to Leo van der Hoek. We have three children, Anniek (21), Jilles (14) and Cato 12 years. Our youngest daughter Cato has OI with more than 40 faults on the counter! There are times when Cato is finally recovering from a break after months and then the next break is already coming. It is frustrating for me as a mother to see that these ‘surprises’ always have a big impact on the young life of Cato and our family. Cato is a happy teenager who loves to move like her friends! Together gym, tennis and cycling. This is also the reason why I have been wondering for some time how and with what means better and more focused research can be done. Inspired by the great enthusiasm of Dagmar, I and Cato have put our shoulders underneath and we have started to raise money for Care4 BrittleBones. We hope that this contribution will enable us to enthuse others to raise money for better research into OI. We also find it important to bring OI more and better to the attention.
Irma van der Hoek
“My name is Jeanette Chedda, I am 31 years old. I’ve been working for five years in online communications at an insurance company. For three years know I have done fitness, wheelchair hockey, and wheelchair ballroom dancing. I love to travel and enjoy being with my family. For a long time I did not feel that I miss anything, but a few years ago I met some other OI’ers, and it enriched my life in a way I could have never imagined. I learned much more about OI. I only wished it had happened earlier. Anyway, better late than never! I have lived my whole life with OI and I know precisely what that entails. A lot of positivity, but also a lot of hardships. For example, I am shorter than others, I look different, I use a wheelchair and other tools. I know that OI cannot be cured completely, but I also know that an improved quality of life can bring a lot of benefits to the person with OI. I have broken my bones 100 times. I tend to forget my own stress and pain, but often hear heartbreaking stories from other people and their family members. By being an ambassador of Care4BrittleBones I want to demonstrate to the rest of the world what OI people are capable of and tell the stories I came across. I also aspire to raise money for research that focuses not only on the physical aspect of OI, but also on the social and emotional side, which in my opinion is often overlooked.”
“I also have Osteogenesis Imperfecta, I sit in a wheelchair and by now have more than 150 broken bones – in my arms, legs, spine and ribs. I am studying Business and Administration. My great passion is dancing in a wheelchair (Latin and Ballroom). I became Dutch champion three times in a row, and even won the World cup once, together with my dance partners Anoek and Lois. My dream is to compete in a World championship! Often I cannot dance, because something is broken. Sometimes it takes weeks or even months to recover and then I am forced to start training all over again… I am an ambassador for the Care4BrittleBones foundation because I want to help people with OI live their passions, just like I do with my wheelchair dancing. OI treatment should become better than it is now – that’s why I am in!”
Jessy van de Pol
“I’m Karin Kragt-Vermolen, married to Michael Kragt. Together we have three children, Senna (10), Indy (7) and Minck (2). Minck has OI and although he is only two years old, he has already had 10 fractures and 1 operation. That’s pretty heavy for such a little boy. I joined the Care4BrittleBones foundation to contribute to the advancement of research that improves the living conditions of people with OI, including our strong little Minck!”
“I’m supporting OI-Research for three reasons: there is much to be done for patients, it implies contributing to innovative and challenging projects and meeting passionate people around the globe. I also believe that, together, supporting OI-Research at a worldwide level, we can make a difference!”
“My name is Marijke van Liempt, I am a behavioral scientist working in child and adolescent psychiatry. From my personal experience and study of children’s development, I know how traumatic the experiences of children with OI can be in their childhood. They are under a lot of stress and thus develop fear for the future. Caring about these children with constant anxiety and grief is an exhausting and frustrating task for the parents. Many children with OI live from fracture to fracture, always scared to have a new one. Due to many fractures they often end up in a wheelchair – an additional challenge while dealing with other kids, when they are young, and with adults when they grow up. People with OI are known for their positive attitude and perseverance, as they need to get themselves together again from disappointments and take the necessary actions to overcome the obstacles on their way to independence. I hope that in the future with more research enabled by Care4BrittleBones foundation, kids with OI will have a chance to experience a more enjoyable childhood with less anxiety, stress and pain, and become happier adults later in their lives. All of us can contribute to that future!”
Marijke van Liempt
Hi there! My name is Marina and my husband and I were very fortunate to become parents of Luca. He is a very happy 22 months old baby and was diagnosed with OI shortly after birth. I was very inspired by Dagmar’s TED Talk and wanted to become part of care4brittlebones right away. We had a really hard time trying to understand more about OI and its implications. General information and treatment is poorly shared among different doctors and therapists. We feel like we had to go out of our lives to research about the disease and put together the right support team for our baby. Our main goal is to facilitate that process to other families who are facing the same challenges we did. We aim to do that by (I) raising awareness about OI in Brazil and being up-to-date with the best practices around the world that can eventually be implemented or tested over here and (ii) sponsor fund raising events to enable more researches for OI.
“My name is Melvin Elderhorst. I’m 15 years old, live in Hoofddorp and have Osteogenesis Imperfecta Type III. I am in my second last year of high school. A few years ago I heard a presentation about Care4BrittleBones and was very impressed. When I was asked to become an ambassador, I immediately agreed! I know that research on Osteogenesis Imperfecta is very important, because it brings new knowledge on how to improve quality of life, which has a huge impact on someone with OI. And of course I decided to join!”
My name is Michaël Roele. I am 24 years old and I am working as a journalist. I have Osteogenesis Imperfecta. Especially in recent years I have suffered a lot of fractures, especially on knees and elbows. I had a hard time with that for a while. When I came into contact with the Care4BrittleBones Foundation, I noticed that I was not the only one. There are still so many areas where the quality of life for OI patients can be improved. Consider, for example, the development of better medicines, but also the mental aspect. As an ambassador for Care4BrittleBones, I hope to be able to help move us forward.
“My name is Mira Thompson, I’m 22 years old, I study singing at the Utrecht Conservatory and have type III Osteogenesis Imperfecta. As a new ambassador of Care4BrittleBones I have many ideas about what I can bring to the foundation. My main interest is storytelling. I want to focus on the complexity of social and emotional issues caused by this physical disability. This area deserves much more attention. Generating more public awareness for Osteogenesis Imperfecta will enable greater understanding and acceptance for people like us, who look ‘different’.”
I am committed to the care4brittlebones foundation, so that more research is being done into treatments and therapies that improve the quality of life with OI. I have experienced for myself the positive effects of intensive and efficient training on my body. I would therefore like to make an effort to make more knowledge and familiarity possible with physiotherapists and rehabilitation doctors.
“As a father of three children, one of them with OI type III, I see what it means to live with this disease on a daily basis. The limitations and pain resulting from OI are very evident, literally ‘to the bone’. More medical research would be an important contribution to improve the quality of life for all the people with the brittle bones disease. Together with the founders, partners and organizations I joined Care4BrittleBones in order to generate more funds. My goal is to find positive, inspiring, and innovative ways to enable as many people and organizations as possible to raise funds for OI research.”
Rene van der Rijst
My name is Rick Brink and I am from Hardenberg. I have Osteogenesis Imperfecta, but despite of it, I feel I can do all I want to do. I am working as a project lead, am working as a volunteer for my local football club and am active in politics. Even though I can do what I want, I know that many patients are facing problems due to Osteogenesis Imperfecta. They have to deal with extreme fatique and pain due to brittle and curved bones. It is very important that research is progressing for these people, so that they can actually live their “unbreakable spirit”.
“My name is Roos Louwen and I am married to the love of my life Ivo. We have three children, Benjamin (5), Sofia (3) and Emilie (2). Benjamin has OI. We are happy that OI does not control our lives and that we can do what we want. Benjamin is a cheerful and optimistic kid who enjoys school and his friends. Despite our busy lives with three small children and our busy jobs, I like to dedicate myself to the Care4BrittleBones Foundation. Over the years I have built a large network that I like to use for raising funds for the Foundation. I also like to run and I want to run the Dam2Dam race for the Foundation as an annual event. Enabling scientific research is crucial if we want the children of the future to have less pain, more convenience and more possibilities! Benjamin belongs to the first generation of children who received bone-strengthening medication from the day of his birth. We believe that this is the reason that Benjamin amazes physicians with his development. At the time it was said that he could never walk. The contrary has been proven and he walks through life! That is what scientific research has enabled and we still have a long way to go!”
“We are Rob and Rebecca van Berkel. We live in Edam and have two beautiful daughters named Holly (14) and Lucy (12). Lucy has a mild form of OI that developed in her early years. Her legs break repeatedly, so she always has to learn to walk again. Lucy is a wonderful, strong, happy and stubborn girl with a truly unbreakable spirit. The Bisphosphonate drug has done her well, diminishing her fractures. But it is not very clear how the drug works – further research requires time, energy, money and collaboration. OI as an rare disease does not get much attention, but its impact on a children and their families is so great that we want to commit ourselves wholeheartedly to the Care4BrittleBones foundation. We want to contribute as much as possible to help children with OI and advance the medical treatment. We do it because everyone is entitled to have a better life, and we are all responsible for it.”
Rob & Rebecca van Berkel
“My name is Welmoed Santema. I work as a team manager in the municipality of Salland, and live with my partner Eric and our daughter Benthe in Diepenveen. Benthe has OI type IV. She has regular surgeries on upper and lower legs either after her fractures or later to help her bones “align”. These operations are heavy and often mean a step backward in her development. Despite of that she stays positive and moves forward. However, OI is a very demanding condition. It would be fantastic if a treatment or a medicine was invented to make life of all OI patients easier! But medical research and development require substantial investments… I joined the Care4BrittleBones foundation to encourage as many people and organizations as possible to raise these funds!”