Chordoma Foundation

Ambassadors

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 or interested in becoming one, please contact info@chordoma.org.

Canada – Steven Golick

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.

Canada – Edward Les, MD

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.

France – Amandine Saly-Giocanti

I live in France, near Paris, where I work as a librarian in a university. I was diagnosed with a sacral chordoma when I was 28 years old, just after the birth of my daughter. After a tough battle, I am now doing well and enjoying life and my family. I know how lost one feels when faced with the diagnosis of a serious and rare disease. I would like to use my experience to help patients in France and their families to face their diagnosis and to get the best information to manage their journey.

Français

Je vis en France, près de Paris, où je travaille en tant que bibliothécaire dans une université. J’ai été diagnostiquée d’un chordome sacré alors que j’avais 28 ans, juste après la naissance de ma fille. Après une dure bataille, je vais désormais bien et je profite de la vie et de ma famille. Je sais combien on peut se sentir perdu face au diagnostic d’une maladie rare et grave. J’aimerais que mon expérience puisse aider des patients de France et leurs proches à faire face à leur diagnostic et à trouver rapidement des informations pertinentes pour piloter leur parcours.

Cliquez ici pour accéder au site français.

Irene Badura

Germany – Irene Badura

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.

Deutsch

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

Italy – Cesare Carminati

Cesare’s father was diagnosed with a clival chordoma in 2001 at the age of 50, when Cesare was 13. Since then, together with his mum Giovanna, he’s been supporting his father through 3 surgeries, 2 radiation therapies and a clinical trial. Cesare lives close to his father, near Milan, he’s married to his wife Chiara. He’s a Chinese business consultant and a passionate cyclist.He hopes his experience could help others who are beginning to fight against chordoma. It is a long journey, It never gets easier, you just go faster.

Italiano

Al papà di Cesare è stato  diagnosticato un Cordoma del clivus nel 2001, da allora, insieme alla madre Giovanna, lo ha aiutato ad affrontare 3 interventi, 2 radioterapie e uno studio clinico. Vive vicino ai genitori, tra Bergamo e Milano, è sposato con Chiara. Cesare è un esperto di Cina, docente di lingua cinese, e ciclista appassionato.  Spera che la sua esperienza possa aiutare coloro che iniziano questa battaglia.

Clicca qui per accedere al sito italiano.

Italy – Federica Monti

I am an Italian research fellow in law. My father was diagnosed with a clivus chordoma in 2016, while we were happily planning my wedding day. Suddenly the world fell upon us. The Chordoma Foundation provided us with useful information about the disease as well as references of skilled doctors in my country. All these made us feel not alone anymore in our “new fight”. The Chordoma Foundation was decisive, in finding the right way. My goal is to help other people who receive a chordoma diagnosis in finding the right treatment, offering support through my personal experience, instilling hope in all new patients.

Italiano

Sono una ricercatrice universitaria in giurisprudenza. A mio padre è stato diagnosticato un cordoma del clivus nell’anno 2016, proprio mentre stavamo felicemente organizzando il giorno delle mie nozze. Improvvisamente il mondo ci è crollato addosso. Grazie alla Fondazione Cordoma abbiamo ricevuto informazioni estremamente utili sulla malattia, nonché i riferimenti degli specialisti nel mio Paese. Tutto ciò ci ha fatti sentire meno soli, nella nostra “nuova battaglia”. La Fondazione Cordoma è stata decisiva, nel trovare la strada giusta. Il mio obiettivo oggi è quello di poter aiutare coloro che ricevono una diagnosi di cordoma, affinché possano trovare la strada verso i giusti trattamenti, offrendo loro supporto attraverso la mia esperienza ed infondendo loro speranza.

Clicca qui per accedere al sito italiano.

Italy – Francesca Romana Lacroce

Francesca is a sociologist, with a subsequent specialization in health economics. She has been working in healthcare for more than 10 years, held roles in multiple functional areas including organization of services for patients. She currently works as program manager in a Research Center for Artificial Intelligence and Big Data in Healthcare. She is committed to breaking down barriers that limit the access to treatment for all patients. Francesca dedicates her commitment to Chordoma Foundation to Amedeo and to the memory of Claudia, and to all the people who, as patients or as caregivers, fight this disease.

Italiano

Francesca è una sociologa, con una successiva specializzazione in economia sanitaria. Lavora in ambito sanitario da più di 10 anni, ricoprendo ruoli in diverse aree funzionali inclusa l’organizzazione dei servizi per i pazienti. Attualmente lavora come program manager in un Centro di ricerca per servizi di Intelligenza Artificiale ed elaborazione di Big Data in Sanità. Il suo impegno è affinchè siano abbattute tutte le barriere che limitano l’accesso alle cure per tutti i pazienti.

Dedica questo suo impegno a Amedeo e alla memoria di Claudia. E a tutte le persone che, come pazienti o come caregiver, combattono con coraggio questa malattia.

Clicca qui per accedere al sito italiano.

Caroline Kooy

The Netherlands – Caroline Kooy

Since 2016, Caroline has been a patient advocate in the Netherlands for bone sarcomas, specifically chordoma. In this capacity, she is involved in the Chordoma Foundation and the Dutch Patiëntenplatform Sarcomen. In 2020 she initiated a collaboration between European patient organizations servicing bone sarcoma patients. Her goal is to achieve synergy through cooperation: “Bone sarcomas need progress”. In addition to her volunteer activities, she is an entrepreneur with a focus on sustainability. Through her professional background, Caroline has an extensive network across Europe.

Nederlands

Caroline is sinds 2016 belangenbehartiger in Nederland voor botsarcomen, met name chordomen. In die hoedanigheid is zij betrokken bij de Chordoma Foundation en Patiëntenplatform Sarcomen. In 2020 startte ze een samenwerking tussen Europese patiëntenorganisaties voor botsarcoompatiënten. Haar doel is om door samenwerking synergie te bewerkstelligen: “Botsarcomen hebben vooruitgang nodig”.

Naast haar vrijwilligerswerk is ze ondernemer met focus op duurzaamheid. Door haar professionele achtergrond heeft Caroline een uitgebreid netwerk in Europa.

Hier vindt u de link naar de Nederlandse website.

United Kingdom – Kate Mason

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.

United States (Illinois) – Noreen Potempa

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.

United States (North Carolina) – John Mainey

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.

South America – Jonathan Roye

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.

Haga clic aquí para acceder al sitio web en español

Spain – Antonio Bonafonte

Antonio is a Telecommunications Engineer. He worked for more than 25 years as a professor at the Universitat Politècnica de Catalunya until 2019, when he decided to continue his research career in Artificial Intelligence in the industry. In 2021 he was diagnosed with Chordoma and was treated with surgery and radiation. The resources offered by the Chordoma Foundation shed light on many of his questions and helped him face the disease with serenity. Since 2022 he has been a volunteer, happy to help others in similar situations to get the best information.

Español

Antonio es Ingeniero de Telecomunicaciones. Trabajó más de 25 años como profesor en la Universitat Politècnica de Catalunya hasta 2019, cuando decidió seguir con su carrera investigadora en Inteligencia Artificial en la industria. En 2021 fue diagnosticado con Cordoma y fue tratado con cirugía y radioterapia. Los recursos ofrecidos por la Chordoma Foundation (Fundación Cordoma) arrojó luz a muchas de sus preguntas y le ayudaron a afrontar la enfermedad con serenidad. Desde 2022 es voluntario, encantado de ayudar a otros en situaciones similares a obtener la mejor información.

Haga clic aquí para acceder al sitio web en español

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