Originally formed in 2016, the Chordoma Foundation’s Community Advisory Board (CAB) has served as a critical source of input and ideas on our expanding suite of education and support services for chordoma patients and family members. Comprised of dedicated patients, volunteers, and advocates, this group also provides valuable feedback to 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.
The many initiatives the CAB has supported over the past two years include:
- Creating new educational resources such as our Expert Recommendations for the Diagnosis and Treatment of Chordoma booklet
- Developing and launching Chordoma Connections, the first online community designed specifically for chordoma patients and family members
- Expanding our Peer Guide program
- Enhancing and bolstering our Patient Navigation Service
- Strengthening the support and networking opportunities available to patients and family members at Chordoma Community Conferences
- Growing our community fundraising efforts
Meet the newest CAB members
Earlier this year, the Foundation’s Board of Directors appointed five new CAB members representing a range of experiences and perspectives within the chordoma patient community to join the existing ten CAB members in helping to take the Foundation’s work to new heights. Each of these individuals has a long history of involvement with the Foundation and are bound together by their common interest to improve the lives of others touched by chordoma.
|Sue Brenneman 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.|
|Caroline Kooy 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 LaForge’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.|
|Joe McGovern 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.|
|Steven Golick 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.|
We are incredibly grateful to all of our CAB members for their hard work and dedication and look forward to working together on more exciting initiatives over the coming months.