Since launching in January, more than 400 patients and caregivers worldwide (and counting!) have already joined the conversation in our new online community, Chordoma Connections Offering those affected by chordoma a private, web-based platform through which to ask questions, share experiences, and get support from others who have been there, the community also serves as a tool to capture and archive the collective wisdom of our chordoma “village” for the benefit of future generations.
Bringing this incredibly valuable resource to life has been a years-long team effort, with the Foundation, members of the community, and generous donors coming together to take our shared vision of digital togetherness from concept to reality. A key player in this effort is The Lee-Straus Family Fund for Patient Empowerment, established in 2015 to commemorate the tireless efforts of the Lee-Straus family to champion better experiences, resources, and support for chordoma patients and families around the world. With more than 13 generous donors raising more than $30,000, the Fund helped to fuel the creation and launch of Chordoma Connections and lay the groundwork for its lasting impact.
The Lee-Straus Family
Heather Lee, Steve Straus, and their children, Jason and Justin – who lost his courageous battle with chordoma in 2008 – have epitomized individual and family effort in inspiring hope in others and moving research forward. Since Justin’s death, just after his thirteenth birthday, the family has maintained an extraordinary level of commitment to the Foundation and the chordoma community.
When Justin was first diagnosed and being treated in 2002, there was no way to connect with other chordoma patients, particularly with parents of pediatric chordoma patients. As a result of that experience, the family resolved to work to ensure that other families would not have to feel the isolation and stress of navigating a chordoma diagnosis alone. This resolve translated into Heather’s focus on education and outreach as a member of the Board of Directors. She was a driving force behind the expansion of our patient services, helping to establish the Peer Connect program and Patient Navigation Service, and expand the educational content on our website.
The family’s legacy of service – from helping to launch the Foundation in its early years to Justin’s inspiring call to arms at the first-ever International Chordoma Research Workshop to Heather’s eight years of leadership on the CF Board – has left an indelible mark on the chordoma community. It is thanks, in great part, to their perseverance that chordoma patients have access to the many educational materials, support services, community conferences, and navigation resources now offered by the Foundation.
The Lee-Straus Family Fund for Patient Empowerment was created to acknowledge the family’s service, continue honoring Justin’s message of perseverance, and move forward the Lee-Straus’ efforts to expand education, outreach, and support resources for chordoma patients and families. We are grateful to the special group of donors who came together to support the fund and help make this vision a reality.
Moving forward
Chordoma Connections is the realization of the vision that Heather, Steve, and many of their peers had to create a community that individuals and families can turn to when they feel alone and to connect with others around the world who understand their experiences and have walked their same path. In recognition of all families, including the Lee-Straus family, who have struggled to connect with others affected by pediatric chordoma, a new pediatric group was launched within Chordoma Connections just this month, to help ensure that no family has to face pediatric chordoma alone.
No matter where you are on your journey with chordoma, your role in that journey, or your location in the world, there is a place for you in Chordoma Connections. Chordoma Connections allows for the exchange of valuable information, support, and conversations specific to your needs. Join the discussion today!