Director’s Message

Headshot of Jeffrey Neul

Jeffrey L. Neul, M.D., Ph.D.

In August of 2022, I passed a milestone of having the honor of serving as the director of the Vanderbilt Kennedy Center (VKC) for five years. In reflection, I recall the excitement I had at the opportunity to be part of such an amazing institution that, for over a half of a century, had been working tirelessly to improve the lives of people with intellectual and developmental disabilities (IDD). I also recall the anxiety of being able to step into a role that had been previously held by a series of truly outstanding and inspirational leaders. Time has truly flown by over the last five years, of course influenced by dramatic events that have reshaped our world and by the evolution of the VKC over this time.

The evolution of the VKC is a clear representation of how things progress, and the upward trajectory of this progression is invigorating. During the last five years, we have successfully renewed the federal- and state-supported activities that are the bedrock of the VKC. The federally-funded Eunice Kennedy Shriver Intellectual and Developmental Disability Research Center (EKS-IDDRC) grant provides critical support enabling research at Vanderbilt to better understand and impact people with IDD, with a new focus on enhancing the inclusion of people with IDD into important research such as vaccine trials. The University Center for Excellence in Developmental Disabilities (UCEDD), also federally supported, connects the VKC with community organizations, providers, government agencies, and stakeholders to provide access to best practices, access, and advocacy with impact across Tennessee and nationally. Over the last five years, we have been able to celebrate milestones of important UCEDD-supported activities such as the 10-year anniversaries of Tennessee Works and Next Steps. Through the Leadership Education in Neurodevelopmental Disabilities (LEND) federally-funded training program, we prepare graduate-level health professionals in 15 professions – as well as family members and self-advocates – to assume leadership roles to serve children with neurodevelopmental and related disabilities. And the unique Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), supported from state contracts and partnerships, enables wide-ranging statewide activities directed towards early identification and intervention as well as school-based capacity building to support free and appropriate public education for people with autism across the state of Tennessee. TRIAD’s programs are often viewed as a model worthy of emulation across the nation.

The fundamental mission of the VKC is to improve the lives of people with IDD and their families through research, service, education, training, and advocacy. While our success in obtaining federal grants and state contracts is essential, philanthropic support is vital to achieving this mission. The generous giving of individual donors enables innovative pilot research studies in IDD, providing critical preliminary information that has been highly successful in furthering our understanding of and improving the care for people with IDD, and has been foundational in successful applications for external funding. Importantly, the amazing and long-standing support of Academy of Country Music Lifting Lives has enabled the ACM Lifting Lives Music Camp for over a decade and supported the Vanderbilt Music Cognition Lab to utilize the healing power of music for people with IDD.

While these successes are highly meaningful, I also reflect upon another quote from Rose Kennedy, the mother of John F. Kennedy and Eunice Kennedy Shriver, whose dedication to people with IDD led to the establishment of the VKC: “Life isn’t a matter of milestones, but of moments.” The last five years have been full of deeply meaningful moments of interactions with the incredibly dedicated people of the VKC. Through our shared mission, we have continuously worked to find ways to synergize activities, such as enlisting the VKC Community Advisory Council (CAC), a UCEDD-led program, to help guide the research activities of the IDDRC so we can best meet the needs of stakeholders. We also asked the CAC to develop a Center-wide equity statement that represents our shared values and goals for the improvement of how the VKC can best reflect and serve the diverse community we represent. Some moments are also bittersweet, such as the retirement in 2022 of our long-standing VKC social worker Carol Rabideau, and the founding director of Next Steps at Vanderbilt, Tammy Day. Additionally, we bid farewell to Erik Carter, who co-directed the UCEDD alongside Elise McMillan, and who was instrumental in bringing a more intentional focus on spirituality and belonging to the work of our Center.

Throughout this issue of VKC Discovery, we highlight various activities and programs in support of our mission. I hope you enjoy reading these highlights as much as we have experienced doing this work. I know that I am truly blessed and deeply grateful to have the opportunity to work on this important mission with such dedicated colleagues and a supportive community. While it is great to reflect upon what has happened over the last five years, I would like to offer a final quote from Pope John Paul II: “The future starts today, not tomorrow.”

Please join me today in making the future a better world for people with IDD and their families.