Chordoma Foundation


Ambassadors are volunteers who help the Foundation build and strengthen relationships with patients, family members, supporters, and partners in their respective countries and communities. If you are interested in connecting with any of these Ambassadors, please contact

Irene Badura

Irene Badura – Germany

In 2019, a clivus chordoma was discovered in my eldest grandson (now 7 years old). Fortunately, my family knows several neurosurgeons who were able to help us find the right pediatric surgeon. My goal is to help other people find the right treatment so that it can be easier for them. I am therefore now working with the German Sarcoma Foundation to make information about chordoma patients, relatives, and doctors accessible.

I am 55 years old and after raising four children and two foster children, I studied psychology. Now I work as a neuropsychologist in an early rehabilitation facility in southern Germany. My husband and I enjoy skiing, hiking, traveling, and going to square dance events.


2019 wurde bei meinem ältesten Enkel (jetzt 7J.) ein Clivuschordom entdeckt. Glücklicherweise kennt meine Familie einige Neurochirurgen, die uns bei der Suche nach dem geeigneten pädiatrischen Operateur helfen konnten. Mein Ziel ist es anderen Menschen bei ihrer Suche nach der richtigen Behandlung zu helfen, so dass sie es für sie einfacher ist. Ich arbeite daher jetzt zusammen mit der Deutschen Sarkom Stiftung daran, Informationen zu Chordomen Patienten, Angehörigen und Ärzten zugänglich zu machen.

Ich bin 55 Jahre und habe, nachdem ich vier Kinder und zwei Pflegekinder großgezogen habe, Psychologie studiert. Jetzt arbeite ich als Neuropsychologin in einer Frühreha-Einrichtung in Süddeutschland. Zusammen mit meinem Mann  gehe ich gerne Skifahren, Wandern, auf Reisen und zu Square Dance Veranstaltungen.

Klicken Sie hier <<>> um zur deutschen Seite der Chordoma Foundation zu kommen

Steven Golick – Canada

Steven Golick is a retired partner of Osler Hoskin & Harcourt LLP, one of Canada’s leading law firms. Steven now Co-Chairs the Patient and Family Advisory Council at the Odette Cancer Centre. In 2013 he received the Queen Elizabeth II Diamond Jubilee Award for his contributions to the community, including his role as a co-founder, director, and secretary of Kids Help Phone. During his 30-year legal career, Steven was a frequent author and speaker on the issues of insolvency and restructuring, and prior to that he was a professional musician. Today, Steven continues to pursue his passion for music, playing jazz, and recording.

Caroline Kooy

Caroline Kooy – The Netherlands

Caroline is part of a group of volunteers in the Netherlands. The Netherlands had always been strongly represented in the Chordoma Foundation through Hans Keulen, and after Hans’ death in 2015, Caroline has continued to represent the interests of Dutch chordoma patients. Caroline’s main focus is to make information available in local languages and geared toward local cultures and circumstances. She is also a board member of the Dutch Patiënten Platform Sarcomen and represents this patient organization in the Dutch Sarcoma Study Group. Through her professional background, Caroline has an extensive network across Europe.

Edward Les, MD – Canada

Ed is a pediatric emergency medicine physician in Alberta, Canada and a clival chordoma survivor. A former CF Board member, Ed serves as the Medical Liason for the Foundation’s Community Advisory Board. Dr. Les is also helping to spearhead a major fundraising initiative on the part of Canadian families impacted by chordoma. He helped establish a partnership with the Canadian Cancer Society to allow Canadian donors to submit tax-deductible gifts in support of chordoma research. Dr. Les lives in Calgary, Alberta with his wife Sherri, also a physician, and together they have four young children.

John Mainey – North Carolina, US

John Mainey is a retired Operations executive. During his 42-year career with IBM, Solectron, and Flextronics, the positions he held included Vice President of Supply Chain for the Americas, Vice President of Operations, and Site General Manager for facilities in Austin, Texas, Creedmoor, North Carolina, and Charlotte, North Carolina.

John is a native New Yorker but lived in Austin, Texas for 18 years before moving to his current home in Wake Forest, North Carolina in 2004. He is married to his wife Terri and has 3 children. John now spends his time giving back to the community through his involvement in the Chordoma Foundation, Christ Our Hope PCA Church, the Granville County United Way, and Made4Me.

John’s son Charles (Chuck) died of chordoma in January 2014 after courageously fighting the disease for almost 15 years.

Kate Mason – United Kingdom

Kate is from Worcester, England and was diagnosed with a clival chordoma at the age of 25. She completed her treatment in Cambridge and Manchester, learning a great deal about chordoma along the way. She graduated from the University of Birmingham in 2017 and has since worked in local government. She enjoys meeting others who are going through the same experience and is glad to be able to support patients in the U.K.

Noreen Potempa – Illinois, US

Noreen Potempa has dedicated her career to educating children and promoting inclusion and equity within schools. Noreen lives in a northern suburb of Chicago, IL with her husband, Mick, who beat clival chordoma in 2013. During Mick’s treatment, Noreen became a strong advocate for him, as well as the entire chordoma community. In the ensuing years, Noreen has been instrumental in creating a signature One-in-a-Million Benefit in support of the Chordoma Foundation and chordoma research. The two benefits held thus far have raised more than $80,000. Noreen was an elementary school teacher for more than 30 years and currently serves on the Board of Trustees of North Shore Country Day School. She is actively involved in other philanthropic pursuits, including Bear Necessities Pediatric Cancer Foundation and the Chicago Botanic Garden.

Jonathan Roye – South America

Jonathan Roye lives with his wife, Carla, in Venezuela and works in construction and investment management. His father, Rodolfo, is a chordoma survivor. Jonathan is trained as a civil engineer and also has a MBA in international management. He works to expand the Foundation’s reach into South and Central America.

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