Community Advisory Board
Our Community Advisory Board (CAB) is comprised of dedicated patients, volunteers, and advocates. The CAB advises the Foundation’s staff and Board of Directors on a range of programmatic and operational matters, ensuring that everything we do – from patient services to research to marketing – supports patients and their families in the best possible way.
Chris Jones – Chair
Chris is a retired executive whose 18-year-old daughter was diagnosed with chordoma and underwent chemotherapy, surgery, and radiation treatments. Chris’s passion is supporting, educating, and guiding newly diagnosed patients to seek multiple opinions and ultimately receive treatment from chordoma experts. This also led him to become a Chordoma Foundation Peer Guide and a group moderator in the international chordoma support group on Facebook.
Edward Les, MD – Medical Liaison
Ed is a pediatric emergency medicine physician in Alberta, Canada, and a clival chordoma survivor. A former CF Board member, Ed serves as the CAB’s Medical Liaison, acting as a link between our Medical Advisory Board (MAB) and the CAB. In this role, Ed brings important questions, issues, and concerns of the chordoma patient community to the MAB and helps the staff relay insights and recommendations from the MAB to the patient community.
Sue is a master’s prepared nurse educator who taught for more than 40 years. She retired from teaching in 2016, when her adult son was diagnosed with clival chordoma. Since then she has focused on supporting others in the chordoma community and helping them understand the diagnosis of chordoma and the importance of seeking a chordoma expert physician for treatment.
A retired kindergarten teacher and author, Susan wrote about her personal experience as a chordoma patient in her latest book Confronting Chordoma Cancer: An Uncommon Journey. As a Foundation Peer Guide, she is passionate about helping patients and caregivers with the day-to-day challenges they encounter.
Steven is a retired partner and former chair of the insolvency and restructuring group of the Canadian law firm, Osler, Hoskin & Harcourt. Steven was diagnosed with skull-based chordoma in 2012 and has since become a co-founder of the Canadian Chordoma Network, which raised more than $300,000 in 2017 for chordoma research. Steven was the founding Co-Chair of the Odette Cancer Centre Patient and Family Advisory Council and is a member of the Quality Committee of the board of Sunnybrook Health Sciences Centre. In 2013 Steven received the Queen Elizabeth II Diamond Jubilee Award for his contributions to the community, including his roles as a co-founder, director, and secretary of Kids Help Phone, and in 2017 he received a Lifetime Achievement Award from Kids Help Phone.
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.
Maureen’s 18-year-old daughter Angela was diagnosed with clival chordoma in 2015. Angela underwent two surgeries in Vancouver British Columbia and 38 radiation treatments in Seattle before leaving the chordoma battlefield. Since Angela’s diagnosis, Maureen has become passionate about educating the Canadian healthcare system about chordoma and sharing advances in research and treatment. She exercises this passion by supporting other chordoma warriors as a moderator of Chordoma Connections, the Foundation’s private, online community, and is an active and vocal member of the independently managed Chordoma Survivors Facebook group. In her daughter’s memory, Maureen continues to advocate for changes in the Canadian healthcare system in the hopes that others may have an easier road to travel.
Steven works in principal investments in the global power and renewables sector, residing in London. In 2012, while Steven was recuperating from a near-fatal hit and run car accident, a follow-up MRI incidentally revealed a sacral chordoma. He was treated at Memorial Sloan Kettering, and since recovering has made it his mission to raise funds for the Chordoma Foundation and awareness about chordoma. Over the last 3 years, his annual half marathon fundraisers have raised more than $125,000 for the Foundation. For his efforts, Steven was highlighted as one of our Featured Champions.
Joe is retired after a 38-year career with GE in sales and marketing. He was diagnosed with lumbar chordoma in 2015 and underwent surgery at Johns Hopkins University followed by proton therapy. Continuing his current rehabilitation program, Joe seeks to help new patients explore and understand the treatments and services available to them and support the patient education efforts of the Foundation.
Jeff has been in the technology field for more than 18 years and currently works at Cisco Systems. He was diagnosed with clival chordoma in 2003, and has since had four recurrences, all treated with surgery at the University of Pittsburgh Medical Center, followed by radiation at Massachusetts General Hospital. Jeff lives in Kansas, MO with his wife, Erin, and their three young daughters. He hosts an annual Golf Tournament and Bowling Event in support of the Foundation and is eager to help find a cure for chordoma by helping others with fundraising. For his efforts, Jeff was highlighted as one of our Featured Champions.
Megan’s husband, Joe, was diagnosed with sacral chordoma in 2016. The Chordoma Foundation was instrumental in helping Megan and Joe navigate his diagnosis and treatment. Dr. Jean-Paul Wolinsky, then at Johns Hopkins, was able to remove the tumor en bloc with clean margins. During his journey, Megan served as Joe’s primary caregiver, and she is passionate about supporting patients and their families. As an outgrowth of their experience and other healthcare issues they have faced, Megan returned to school, receiving her certificate in Patient Advocacy through UCLA in December 2019. Megan also holds a bachelor’s degree in International Politics and a master’s degree in International Finance from Georgetown University’s School of Foreign Service. Megan and Joe live in Atlanta, Georgia, with their two teenagers. She is an active member of the local community, including serving as the president of the Alumni Association at Marist School. Since Joe’s diagnosis, Megan has been an active member of the Chordoma Foundation’s capital campaign committee and worked on fundraising and awareness initiatives to support the Foundation’s goals. She is honored to be part of the Community Advisory Board and to help further the mission of the Chordoma Foundation.
Tim is a Nurse Practitioner by background who works as an executive in a large healthcare system. His youngest daughter was diagnosed with a cervical chordoma at age 13 in 2013 and underwent both surgery and radiation treatments. In addition to his passion and commitment toward the Chordoma Foundation, he is also a board member for the Make-A-Wish® Foundation of Philadelphia, Northern Delaware & Susquehanna Valley.