Community Advisory Board

What is a Community Advisory Board (CAB)?

A Community Advisory Board was established to provide ongoing community input throughout the conduct of this study on Down syndrome (DS), aging, and dementia. The purpose of the CAB is to ensure that the study is feasible, relevant, and responsive to the needs and priorities of individuals with Down syndrome, their families, caregivers, and the broader DS community. The CAB will provide feedback on participant recruitment strategies, study materials, community outreach efforts, cultural and linguistic appropriateness of study procedures and materials, and the interpretation and dissemination of study findings. The CAB serves in an advisory capacity only and does not have decision-making authority over study conduct or scientific decisions.

Five individuals have agreed to serve on the Community Advisory Board. The Board consists of one self-advocate with Down syndrome, one sibling of a deceased individual with Down syndrome, two mothers of individuals with Down syndrome (one of whom is a clinician and one who is also a community leader), and one father who is also a community leader. All CAB members have lived experience within the Down syndrome community through their personal, family, clinical, and/or advocacy roles. Members were identified and invited through the study team’s established relationships with the Down syndrome community based on their experience, interest, and willingness to contribute to the study.

How will the Community Advisory Board operate?

The CAB will meet approximately every 3-4 months (3-4 meetings per year) for one-hour sessions, conducted either virtually or in person. During these meetings, members may review recruitment and outreach materials, participant-facing documents, educational resources, and other study-related materials intended for the community. Their role is limited to providing recommendations and feedback to improve the accessibility, acceptability, and cultural appropriateness of the study. CAB members will not have access to participant data or other confidential research information. They will be expected to maintain the confidentiality of any non-public study materials discussed during meetings.

Meet the Community Advisory Board:

Tracy Sanok

More information coming soon!

Leone Murphy, APN

Leone Murphy is the mother of a daughter, Michelle, who is 52 years old and has Down Syndrome. Since Michelle was born, Leone has been a staunch Advocate for those who have IDD. She is currently the Chairperson for the Arc of New Jersey’s Medical Advisory Board. Leone is also the Co-chairman for the New Jersey Family Support Group for those who have Down Syndrome are aging and developing Alzheimer’s Disease. She has extensive nursing and health care experience working with the IDD community.

A message from Leone

“I am honored to be a member of the Rutgers University Advisory Board. Those who have Down Syndrome and their families are moving into uncharted territory. This new research project at Rutgers is integral to the development of reliable services to maintain their health and well-being.”

Celeste Cecchetti

Celeste is the mother of two sons, Sean 37 and Andrew 35, she and her husband Rich are residents of the Jersey Shore and have been married 41 years. Inspired by her son Sean, Celeste has spent more than three decades advocating for inclusion and meaningful community participation for individuals with Down Syndrome.

She established the Wall Township Challenger program, which promoted sports participation for children with special needs alongside their peers, and was recognized with Monmouth County’s Outstanding Volunteer Award for her efforts.

Celeste and Sean have continued that advocacy together through the National Down Syndrome Society (NDSS). For the past two years, they have attended the organization’s advocacy conference in Washington, D.C., where they have shared their family’s story and met with New Jersey’s Senators and Representatives to advocate for issues affecting individuals with Down syndrome and their families.

Her experiences alongside Sean through childhood, inclusive education, adulthood, employment, and community life have given Celeste a deeply personal, lifelong perspective on both the joys and challenges experienced by individuals with Down syndrome and the families who love and support them.
In addition to her advocacy work, Celeste helped her sister, Cara, open the Life is Good store in Spring Lake, New Jersey, in 2005 and continues to manage the business today. She holds a Bachelor of Science in Business Administration from Thomas Edison State University.

As Sean and his peers enter a new stage of adulthood, Celeste is committed to ensuring that they have a meaningful voice in the research, resources, support, and care surrounding healthy aging and Alzheimer’s disease. She hopes to bring to the Rutgers Advisory Board not only her decades of advocacy experience, but the perspective of a mother who has spent a lifetime helping her son build a full, connected, and meaningful life.

Jane Boyle

Jane’s sister Ellen Boyle was born with Down Syndrome in 1965 and died from end stage Alzheimer’s Disease at age 52. After their parents deaths, Jane and Ellen lived together with Jane as legal guardian and primary caregiver as Alzheimer’s Disease progressed from early stages to hospice at home.

Beginning in 2019, she and Leone Murphy established and co-facilitate a virtual, statewide, and monthly family support group focused on Down syndrome and Alzheimer’s Disease that features presentations by national and state experts.

More information about the support group here!

Jane retired from a 40+ year career leading non profit foundations in healthcare and higher education settings and continues to consult with on board and resource development issues.

Vince Schmidt