As you may have read in our October/November newsletter, the Chordoma Foundation recently welcomed longtime advocate and devoted dad Chris Jones as the newest Chair of our Community Advisory Board (CAB). Chris has served as a CAB member and a Chordoma Foundation Peer Guide since 2016 and also co-moderates the private Chordoma Survivors Facebook group. He brings countless hours of experience supporting the needs of patients and families to his new role.
The CAB is composed of 13 dedicated patients, caregivers, volunteers, and advocates who advise the Foundation’s staff and Board of Directors on a range of programmatic and operational matters, ensuring that everything we do is well-informed and designed to best support the needs of everyone we serve today, as well as patients diagnosed with chordoma in the future. We are thrilled to have Chris’s passion and leadership at the helm of the CAB heading into 2019 and hope you will join us in welcoming him to this new position.
As a parent who lost his 22-year old daughter Madison to chordoma in 2018, Chris is intimately familiar with the hope and heartache of caring for a loved one with this disease, and the significance of reliable, straightforward information about it. Even in the most difficult of circumstances, he has remained steadfast in his commitment to helping support, educate, and guide other patients and families through their journeys, empowering them to pursue the best care possible.
To quote Chris:
“When I finally learned of the Chordoma Foundation, they helped guide us to experienced chordoma centers. Only then were the treatment recommendations consistent. Patients only have one chance for their first surgery. While my daughter’s disease ultimately ran its course, it didn’t need to – or at least not so soon – had it been properly diagnosed initially. I remain committed to the Chordoma Foundation and am excited in my new role to help them improve the lives of people impacted by chordoma, to expand and distribute educational material, and to help patients and families navigate this challenging journey by making informed decisions. Chordoma is a solvable problem, and I want to help the Chordoma Foundation by being part of the solution … Madison wanted that.”
Chris inherits his role from inaugural CAB Chair and founding Board Member Heather Lee, whose tireless efforts to continually improve the way we serve and support patients and families have left an indelible mark on the Foundation. Among her many accomplishments over the past 10 years are the launch of the Chordoma Community Conferences, the growth of the Peer Connect Program, and the establishment of the Education and Outreach Committee, the precursor to the Community Advisory Board. We are incredibly grateful to Heather for helping develop and expand our support services by bringing the voice of community members into everything we do. We look forward to Heather’s continued engagement with the Foundation and are thankful for her leadership, passion, and perseverance.
Under Chris’s leadership, the CAB’s top priorities in 2019 will include:
- Distributing new treatment-focused educational materials in multiple languages to patients and families worldwide
- Developing survivorship-focused tools and resources
- Expanding the educational content on our website
- Maintaining and growing Chordoma Connections, the first online community designed specifically for chordoma patients and family members
- Engaging in meaningful third-party partnerships aimed at building a natural history study of chordoma
We are truly fortunate to have such a talented and committed group of volunteers involved in the CAB. We express our sincere appreciation to Heather, Chris, and all our CAB members for their continued hard work and commitment to excellence.
Save the date! June 8, 2019
Chordoma Community Conference at Northwestern Medicine
Join fellow patients, family members, and researchers in Chicago at the next Chordoma Community Conference. Hosted in collaboration with Northwestern Medicine on June 8, 2019, it will be an opportunity to learn about latest advances in research and treatment, connect with leading healthcare providers and other chordoma community members, and take action to achieve our shared vision for a better future for those affected by chordoma. Stay tuned for more information. Registration to open in 2019.