About Us

ABOUT THE FOUNDATION / People, purpose and commitment

Our people

Like many other charitative initiatives, the Synovial Sarcoma Research Foundation is the result of human beings feeling frustrated, angry, sad and afraid and trying to make something out of those powerful emotions.

The core of our Foundation consists therefore of the people directly involved in the experience of a young boy struggling for his life, without even realizing it. As we grow, we will be branching out with people who have those experiences as well, directly or indirectly. It is all about collaboration when dealing with a rare disease like Synovial Sarcoma. It is about coming together on a worldwide scale to make an impact that will be more than 'just a dent'.

The people you see below are already committed, many more have already signed up and we are trying to keep up with the pace that our foundation now has in developing, growing and branching out. To form a worldwide network of people that are united in the thought that with pure size of an organization comes pure power to change what is not right. And with power to change comes the will to collaborate and eventually comes....greatness.

We hope to welcome you soon in our organization, we are looking for people that are honest, have integrity, are competent and result driven and know how to laugh when all else fails. We have a welcoming group ready for you, ready to take you in and work with you based on our common goal: that within ten years we have indeed a much more effective treatment or even a cure for patients with Synovial Sarcoma.

Our purpose

Our purpose is to initiate, stimulate, support and fund Synovial Sarcoma research.

The founders privately started funding a research project in The Netherlands in 2012: “We were looking for research with focus on synovial sarcoma alone, not throwing all soft tissue sarcomas in a mix and trying to have results across the board. If we could start small, maybe we could initiate a wider and maybe even a global partnership among researchers targeted at this very distinct sarcoma. It seems like we are well on our way!”

The Synovial Sarcoma Research Foundation is determined to have a structural impact on the research into a cure for Synovial Sarcoma in the upcoming ten years. Following the research already funded as from 2012, the Synovial Sarcoma Research Foundation is currently co-funding an International Collaborative grant of $ 250,000 with the Liddy Shriver Initiative, each provided $125,000 in support. 

The Synovial Sarcoma Research Foundation intents to be the primary channel for people and organizations that want their donations to go directly to research, strictly dedicated to synovial sarcoma.

Knowing that the research into one specific soft tissue sarcoma like Synovial Sarcoma is difficult because of lack of sponsors and availability of tissue, there is a need and understanding among experts that worldwide cooperation is the only way to successfully understand the disease and find a possible cure.

Our commitment

We are committed to high-quality basic and translational scientific research and want to stimulate the innovative research that will ultimately lead to a breakthrough for Synovial Sarcoma patients.

Researchers themselves know very well how to find each other, know what to research and how. In our work at the Foundation we have met many researchers in the field that are thinking and working with a mindset geared at future developments. They agree that the best way forward is to work together on a global scale, made possible by the most efficient and effective technology platforms.

But as researchers are trying to make a difference in a rare disease like Synovial Sarcoma there are certain resource constraints that are seemingly a fact of live. We believe that there is no shortage of talent or dedication or passion. But there is a shortage of tissue and a shortage of money.

We need to change this.

We do that at the Foundation by defining the lack of resources and by giving the researchers the funds to engage in meaningful partnerships around the world to find a cure for Synovial Sarcoma all together.

THIS IS US / Meet the people behind the SSRF

Board of Directors

  • Koen Jansen - Chairman of the Board

    Co-Founder, Chairman of the Board... but above all dad of a synovial sarcoma survivor. Diagnosed at one and a half years of age, now a thriving six year old superboy.

    Koen was born in 1968, grew up in The Netherlands where he met Susan when attending the Erasmus University in Rotterdam. They moved to Curacao in 2001 following a job offer for Susan. They married in 2004. They have four children, a son of six, a daughter of four and twin daughters of two years old.

    He has a Master degree in Business Economics, is active as entrepreneur and financial director of an insurance company with offices in Curacao, Aruba and Bonaire. If not at the office, you might find him in the local gym trying to get (back) in shape. More likely he is on the golf course or behind some computer or working around the house trying to fix what's broken. If it were possible he would play more golf, see more of the world and take more time to sleep.

    His motto is: "live a lot".

  • Susan van Dijk - Board Member and Fundraising Representative Caribbean

    Co-Founder, Board member and Fundraising Representative Caribbean... but above all mom of a synovial sarcoma survivor. Diagnosed at one and a half years of age, now a thriving six year old superboy.

    Susan was born in 1974, grew up in The Netherlands where she met Koen when attending the Erasmus University in Rotterdam. They moved to Curacao in 2001 following a job offer for Susan. They married in 2004. They have four children, a son of six, a daughter of four and twin daughters of two years old.

    She has a Master degree in Business Administration, is active as entrepreneur and general director of an insurance company with offices in Curacao, Aruba and Bonaire. If not at the office, you might also find her in the local gym, but more likely busy with the logistics of such a large family. Getting everything and everyone in the right place at the right time in good spirits. If it were possible she would read more and sleep more.

  • HENRY MANSE - Board Member and Financial Administrator

    Board Member and Financial Administrator… but above all husband to his wife Ari and proud father of three children.

    Henry was born in 1965, grew up in The Netherlands where he met Ari after graduating from the Erasmus University in Rotterdam. They married in 1993.

    In 1995 they moved to Curacao where they have lived ever since. They have a daughter of twenty-one years old, a son of eighteen, and a son of sixteen.

    Henry is an Executive Master in Finance & Control, and works as financial director for a company operating in the international financial services industry.

    Henry likes to travel, read, and from time to time do some running.

SCIENTIFIC ADVISORY BOARD

  • Prof. Dr. Jean-Yves Blay - Professor of Medical Oncology, Head of the Medicine Dept of the Centre Léon Bérard at the University Claude Bernard, Lyon

  • Prof. Dr. Winette van der Graaf - Head of the department of Medical Oncology at UMC Radboud, Nijmegen, The Netherlands; Chairman EORTC Soft Tissue and Bone Sarcoma Group, Brussels

  • Dr. Akira Kawai

  • Robert G. Maki, MD PhD FACP - Professor, Depts of Medicine, Pediatrics, & Orthopaedics at Tisch Cancer Institute, Mount Sinai Medical Center, New York

    Robert Maki gained his professional experience at the Dana-Farber Cancer Institute in Boston, the Memorial Sloan-Kettering Cancer Center, Cornell University Weill Medical College and Memorial Hospital in New York and as off 2011 at the Mount Sinai Medical Center in New York. He is currently a Professor in the Departments of Medicine and Orthopedics, and also Section Chief in Pediatric Hematology-Oncology in the Department of Pediatrics, working in sarcoma medical oncology for over 15 years, with research experience for over 25 years.

    He has interests in sarcomas of soft tissue and bone in adults, their biology, and in clinical trials and new drug development for this diverse group of diseases. He has mentored over 20 fellows and MD PhD students and continues to develop collaborative clinical and translational studies, with a recent focus on novel mechanisms of apoptosis and tumor initiating cells. He also spends considerable time building multi-center clinical trials in sarcoma.

    Professor Maki is a Fellow of the American College of Physicians, and member of ASCO and AACR. He was President of the Connective Tissue Oncology Society in 2008 and meeting chair in 2003 and 2013.

    Next to his over 125 peer-reviewed publications, he has received many honors and awards, the latest being in 2011 accepting the Steven Ravitch Chair in Pediatric Hematology-Oncology, and in 2013 receiving the Sarcoma Foundation of America Nobility in Science award.

    Professor Maki can be reached with sarcoma questions at bobmakimd@gmail.com.

  • Prof. Dr. David Thomas - Director of the Kinghorn Cancer Centre and Head of Cancer Division at the Garvan Institute of Medical Research, Sydney.

    David Thomas is an NHMRC Senior Research Fellow, and a medical oncologist specializing in sarcomas. He has recently been appointed as Director of the Kinghorn Cancer Centre and Head of Cancer Division at the Garvan Institute of Medical Research, Sydney.

    He has a particular focus on the impact of genomics on cancer medicine.  His current basic research interests include quantitative evolutionary genetics in cancer cell populations, mapping a cancer neochromosome at single nucleotide resolution, and understanding the in vivo biology of osteosarcoma. His work has had significant translational impact.

    Professor Thomas led an international clinical trial of denosumab in Giant Cell Tumor of bone, which has led to a new therapeutic option for patients with advanced disease. He established a national infrastructure for clinical research into sarcomas, the Australasian Sarcoma Study Group. As Director of the statewide adolescent and young adult cancer service (onTrac@PeterMac), Dr. Thomas played a significant national and international role in the development of adolescent and young adult oncology.

WORLDWIDE FUNDRAISING REPRESENTATIVES / Helping you contribute to research

Patients battling synovial sarcoma need your help, now and in the future. We ask for your help in supporting breakthrough research into a cure for synovial sarcoma. The Synovial Sarcoma Research Foundation appreciates your support. All funds raised go to our “breakthrough” research projects.

Our Fundraising Representatives are the liaisons to contributors worldwide. If you are a patient, a survivor, family member or good friend, acquaintance or just ready to contribute to curing people with a rare cancer where almost none of the big bugs are going to, than please contact your local representative.

They most likely speak your own language and will be able to help you set up an event or redirect your current event towards our foundation and therefore directly to Synovial Sarcoma Research.

If you have questions or doubts, please contact your Fundraising Representative via e-mail: info@synsar.org.

  • NOOR DENKERS - Fundraising Representative Latin America

    Fundraising Representative Latin America... but above all she is a globetrotter, who enjoys travelling and exploring new culture.

    Noor was born in 1974, grew up in the Netherlands, and moved to Italy when she was eighteen where she discovered her passion for travelling and learning languages.  Noor studied sociology and Italian at Cardiff University in Wales. She became keenly interested in children´s rights during her Master`s degree at the London School of Economics and has since performed extensive work on issues related to children’s rights, especially in Latin America.

    After a short stay with the International Labour Organization (ILO) in Geneva in 2000, she moved to Costa Rica in 2001 where she now works with the ILO and is in charge of coordinating the International Program for the Eradication of child labour in Central America, Panama, Dominican Republic and Haiti. She has a six year old Costa Rican/Dutch daughter.

    If not at work, you can find her exploring the beautiful beaches of the Pacific and Caribbean coast of Costa Rica, or volunteering as a fundraiser for the Dutch school and local grass-root community and indigenous organizations. If it were possible she would spend more leisure time with her mother, brothers and family in the Netherlands.

    Her motto is: "There is no such thing as problems, only solutions" (dedicated to her dear friend Jon).

  • Anouk van Dijk - Schulp - Fundraising Representative Europe

    Fundraising Representative Europe... but above all she is a mother of two and aunt of a synovial sarcoma survivor.

    Anouk was born in 1975, grew up in the Netherlands where she met Susan's brother Marc in a bar in their home town, during their college years. In 2001 they moved to Haarlem, a beautiful and typically Dutch city close to the sea and Amsterdam. Before they got married in 2005 they travelled around the world and learned to appreciate life and the diversity of people and nature even more. Back in Haarlem, they now have 2 wonderful and enthusiastic boys, currently 6 and 4 years old.

    In the Netherlands there is an expression: 'act normal, that's crazy enough'. Thanks to her boys, crazy is now normal for Anouk. She loves to free the child within her and do a little crazy herself at times.

    Anouk has a Bachelor degree for teaching History and is now a project manager working for the local government. Always busy to develop and improve the way people work, on behalf of them, the organization and the city. If not at work you can find her helping out at her sons' school. If it were possible she would spend more time with family and friends, take walks on the beach or read a good book.

    Her motto is: "Laugh and love with all your heart!" and she also believes deeply in what Nelson Mandela said: "What counts in life is not the mere fact that we have lived, it is what difference we have made to the lives of others that will determine the significance of the live we lead".

  • Susan van Dijk - Fundraising Representative Caribbean

    Fundraising Representative Caribbean... but above all mom of a synovial sarcoma survivor, now a thriving six year old superboy.

    Susan was born in 1974, grew up in The Netherlands where she met Koen when attending the Erasmus University in Rotterdam. They moved to Curacao in 2001 following a job offer for Susan. They married in 2004. They have four children, a son of six, a daughter of four and twin daughters of two years old. In Curacao we consider a person rich when they have many children. 

    She is a Master in Business Administration, entrepreneur and general director of an insurance company with offices in Curacao, Aruba and Bonaire. If not at the office, you can find her in the local gym, but more likely busy with the logistics of such a large family. If it were possible she would read more and sleep more.

    Her motto is one of JFK’s famous lines: “One person can make a difference and everyone schould try.”

  • Vacancy - Fundraising Representative Asia

    Profile coming soon.

  • Vacancy - Fundraising Representative Australia

    Profile coming soon.

  • Vacancy - Fundraising Representative North America

    Profile coming soon.

Supporting staff / Making it work

  • Patrick Aberson and Christiaan Smorenburg - Certified Public Accountant

    Patrick and Christiaan are professionals in financial audit. They are contributing to the SSRF by delivering the audit services fee of charge. Their contribution is very much appreciated by the Board.

  • EVERT JAN "EJ" BOON - Designer

    EJ designed our logo. We wanted a logo that symbolizes financial strength, medical focus and worldwide presence. If possible, we wanted the logo to have a reference to the personal experience of the founders with synovial sarcoma, namely a visual abstract of the shoulder.

    EJ came back with the logo that symbolized exactly what it should:

    The earth or globe can also be seen as a Petri dish, it symbolizes our worldwide approach and our focus on scientific research. The logo is “cut out” by the contour of a shoulder and neck. This symbolizes the starting point of the foundation, as the founders’ son had a synovial sarcoma tumor in his right shoulder*.

    The font is Nexa Slab, it is serious and sleek, but also open and contemporary. The colors are from the palette “medical, global” that fits our purpose well.

    All in all this logo tells it well: the Synovial Sarcoma Research Foundation stands for worldwide funding of collaborative scientific research into synovial sarcoma.

     

    *Please be aware that the synovial sarcoma tumor can grow anywhere in the human body.

  • FELIX LANGFELDT (NEVERWOODS) - Internet Technology

    Felix and Robin are masters of new stuff. But for us, they have committed themselves to the old stuff of developing a website. And as it goes, the more we build, the more we want. So what started as a simple template is already becoming a tailor-made solution.

    Felix is our tailor.

  • ROBIN VAN BAALEN (NEVERWOODS) - Internet Technology

    Felix and Robin are masters of new stuff. But for us, they have committed themselves to the old stuff of developing a website. And as it goes, the more we build, the more we want. So what started as a simple template is already becoming a tailor-made solution.

    Robin is our tailor as well.

COMMITTEE OF RECOMMENDATION

  • J.C. Jansen - Orthopedic Surgeon

    Member of the Committee of Recommendation... but above all orthopedic surgeon and granddad of a synovial sarcoma survivor.

    Mark Jansen was born in 1936 in Jakarta, Indonesia. He came to The Netherlands after the war and studied medicine at the University of Amsterdam. He has three children and seven grandchildren. Many consider him a wise and compassionate man who is now frequently asked to support and coach people in end-of-life situations.

    He specialized as an orthopedic surgeon after working in the field of anatomy for many years. His knowledge of the human anatomy helped him to be an excellent orthopedic surgeon. His empathy, combined with deep knowledge of human biology and anatomy makes him an excellent candidate for the foundation to bridge the gap between expert researchers and laymen.

    Now retired as a surgeon, you can find him in the gardens surrounding his renovated farm in rural Netherlands. But more likely you find him listening to classical music, enjoying a good quality wine, reading and doing stuff around the house. If it were possible he would dine at the best restaurants in the world and drink the best wines from around the world.

    His motto is: "life is full of disappointments. There are big disappointments... and even bigger disappointments. So get used to it and move on."

  • To be appointed - Orthopedic Oncologist

    To be appointed shortly.

     

    Prof.dr. Antonie Taminiau

  • Dr. John Maduro - Radiologist

    Dr. John Maduro is a Radiation Oncologist at University Medical Center Groningen. He finished his dissertation “TRAILs towards improved cervical cancer treatment” in 2009. Before that John got his MD degree at the University of Leiden (LUMC) in 1996 and worked and studied at the Hilversum Hospital in The Netherlands.

    Dr. Maduro is known to the Jansen family as the "Curacao doctor" because of his roots.

  • Dr. Wim Tissing - Pediatric oncologist-hematologist

    Wim Tissing is a pediatric oncologist-hematologist. He works at the University Medical Center Groningen (UMCG) in the Netherlands since 2005. Before that he worked as a pediatrician / oncologist at the Sophia Children's Hospital in Rotterdam. His research in Groningen focuses on short- and long term side effects of treatment.

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