As an organization built by patients for patients, we are constantly seeking to enhance the way the Foundation serves and supports everyone affected by chordoma. Improving the lives of patients and their loved ones is not just our goal, it is a standard to which we hold ourselves every single day.
For the last nine years, we have gathered your input in a variety of ways – from focus groups to surveys to individual conversations – and have turned to your insights to guide our efforts again and again. Today, as the Foundation works to offer more robust patient services and prepares to support new clinical trials, we need your insights more than ever.
That is why we am so proud to announce the formation of our new Community Advisory Board (CAB), which will formalize and strengthen our mechanism for getting input from the chordoma community, and complement our Medical and Scientific Advisory Boards in steering the Foundation’s activities.
Comprised of dedicated patients, volunteers, and advocates, the CAB will advise 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.
What will the CAB do?
The CAB will build on of the work begun through our Board’s Education and Outreach (E&O) committee, which recently completed its two-year charge to help develop the Foundation’s strategy for more fully serving the chordoma patient community. The E&O committee helped develop a comprehensive community survey identifying critical issues and needs among the patient community, provided advice around the creation of our Patient Navigation Service, and supported the development of our Expert Recommendations for the Diagnosis and Treatment of Chordoma booklet.
Moving forward, the CAB will serve as a sounding board and source of input and ideas as the Foundation continues expand its suite of services for the patient community, and will also provide valuable feedback to the Foundation’s growing research, fundraising, and communications teams.
In addition to sharing ideas and perspectives at the request of CF staff, the CAB will from time to time spearhead certain important initiatives. Three such initiatives the CAB will focus on this year include:
- Helping to create a web-based version of our Peer Guide training program
- Organizing the International Chordoma Community Conference (CCC), to be held in Boston on July 16,
- Supporting the enhancement and expansion of our Patient Navigation Service.
Looking ahead, we also anticipate that the CAB will play an important role in developing and reviewing new educational materials, and providing input into the design of future clinical trials.
Meet the inaugural CAB members
The Foundation’s Board of Directors recently appointed six inaugural CAB members representing a range of experiences and perspectives within the chordoma patient community. All of the members of this group have a long history of involvement with the Foundation are bound together by their common interest to improve the lives of others touched by chordoma.
- (Inaugural Chair) Heather Lee, PhD: A founding Board member of the Foundation and past Board chair, Heather has made an indelible mark on the character of the Foundation. In particular, during her time on the Board, Heather was a staunch advocate for focusing on meeting the vast needs of the chordoma patient community, and, among other things, she spearheaded our Community Conference series, Peer Support Program, and the formation of the Board’s E&O committee. Heather and her family became involved with the Foundation during her son, Justin Straus’, six-year battle with chordoma. A certified Senior Professional in Human Resources (SPHR), Heather is a principal at Developmental Associates, LLC a North Carolina-based human resources consultancy.
- Edward Les, MD: Ed is a pediatric emergency medicine physician in Alberta, Canada and a clival chordoma survivor. A former CF Board member, Ed will serve as the CAB’s Medical Liaison, acting as a link between our Medical Advisory Board (MAB) and the CAB. In this role, Ed will bring important questions, issues and concerns of the chordoma patient community to the MAB and vice versa.
- Nadine Aoun-Cordova: Nadine is a paralegal by day and a soccer mom by night. In 2010, she was diagnosed with a cervical spine chordoma and was treated with radiation at Memorial Sloan Kettering. She is committed to the Foundation and most recently volunteered at the Chordoma Community Conferences in 2013 and 2015.
- Brittany Fuchs: Brittany is a graphic designer whose husband, Todd, is a chordoma patient currently living with his third recurrence. He has undergone multiple surgeries, radiation, drug therapy, and suffered a stroke. Brittany has been among the Foundation’s most dedicated volunteers, raising funds for research and helping with a variety of programs including our Doctor Directory, Community Conference, and other events. For their remarkable efforts to support the Foundation, Brittany and Todd were this month’s Featured Champions.
- Susan Garbett: 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. She is passionate about helping caregivers and families with solutions to the day-to-day challenges they encounter.
- Chris Jones: Chris is an IT Project Manager whose 18 year old daughter was diagnosed with chordoma, and underwent both surgery and radiation treatments. He is passionate about supporting, educating, and guiding newly diagnosed patients to seek multiple opinions and ultimately receive treatment from chordoma experts. This led him to become a group moderator in a chordoma survivor support group on Facebook.
We are grateful to each of our inaugural CAB members for their participation and look forward to working together to take the Foundation’s work to new heights.
Over the next year, we aim to further diversify and grow the CAB, with the goal of reaching 10-15 members. If you are interested in nominating someone for the CAB, or being considered yourself, please contact our support team.