Susana Carlos of the Davis Phinney Foundation

An interview with Susana Carlos of the Davis Phinney Foundation: Re-Centering Parkinson’s Voices & Elevating Community Leaders for Parkinson’s on May 19, 2024.



I am a recent Doctor of Public Health Practice (DrPH) in Diverse Populations & Health Equity graduate from Mercer University and previously earned a Master of Public Health in Community Health Promotion from the University of Minnesota-Twin Cities, and a Bachelor of Arts in Psychology (Minor in Cognitive Science) from the University of California-Los Angeles. I am also a Gates Millennium Scholar which this scholarship has honored me with the blessing of opportunity to pursue education for Public Health.


Please tell me a little about your background.

I grew up in Los Angeles, California and I am a second-generation Latina with grandparents who immigrated from Mexico. I spent several years in Minnesota working on various Public Health opportunities and now I live in Colorado where I work with the Davis Phinney Foundation! During my undergraduate years, I became passionate about sexual health education and participated in various education groups. I was quickly interested in the prevention aspects of public health and challenging systems to improve health outcomes, so I pursued graduate degrees in Public Health. I chose to do a Doctorate after earning my master’s because I felt that while my master’s degree prepared me for community efforts, health equity and the lens of targeting vulnerable populations with tailored approaches was missing. This prompted me to apply for the practice-oriented degree with Mercer and I am proud to say that I am among the first with this degree!


Can you tell me more about your organization?

The Davis Phinney Foundation for Parkinson’s focuses on helping individuals live well today. The foundation has found its footing in the Parkinson’s landscape in providing educational resources and cultivating leadership opportunities to support those looking for support. I work within the foundation’s Healthy Parkinson’s Communities Network program that applies a coalition-building approach to improving the environment for persons with Parkinson’s.


What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?

I began working with the Davis Phinney Foundation (DPF) in 2022 and I get to spend every day of my workweek blending my personal interests in leadership development and professional experiences in Public Health. I have always been interested in the mind-body relationship and agree that a holistic approach to health is necessary and this often has long-term systemic impact with multiple objectives. I was first familiar with Parkinson’s as an undergraduate learning about neurodegenerative diseases and I have always been interested in chronic health illnesses that have a myriad of factors and causes. My Psychology background mixed with my professional public health training have aided me in becoming versed in the Parkinson’s realm and I am constantly learning from the amazing people I get to work with. My goal for my professional career was to bring public health research and bridge the gaps for community impact. DPF allows me to act as a facilitator, mentor, public health professional for Parkinson’s leaders and I am grateful for the acceptance I have received from those around me as we work together for the common vision of improving health outcomes for persons with Parkinson’s. I prioritized my dissertation work as a doctoral student on my coalition-building management, seeking to determine how to empirically define coaction successes for impact. This work enhances my awareness as a facilitator and public health professional crafting leadership education on collective action.


What type of goals do individuals with Parkinson’s have when working with you?

Leaders in my Parkinson’s realm is focused on creating local coalitions, or community action committees to make strides towards improving the community for persons with Parkinson’s – through long-term impact bridging gaps and meeting unique needs for those local areas. Goals range from increasing awareness of Parkinson’s with the general community, increasing awareness of existing resources and services to live well, increasing access to services, improving, and advocating for improved local Parkinson’s programming or public programming, and increasing diversity for the Parkinson’s populations. The objective for each leader varies though entails a group addressing Parkinson’s through locally-defined activities, events, programs, services, as well as other advocacy.


What type of training and how long are the programs?

Folks who are interested in becoming involved with the HPC Network can reach out to us on the website. In your application, our team works on assessing your personal strengths to define opportunities for leaders to engage in a role that is aligned with these strengths, capacities, and would help that individual develop as a leader. Leadership with the Davis Phinney Foundation can range from more structured opportunities such as being an ambassador, who are spokespeople for the foundation as well as the “boots on the ground” connectors for persons with Parkinson’s. Engagement includes quarterly meetings with all programs, monthly cohort meetings, a structure orientation or onboarding that takes roughly 3 hours over one month. On the other side of the spectrum of engagement, the coalition leaders (Community Action Committee Leaders) have a more ambiguous path that provides a “choose-your-own-adventure” style approach to community organizing and consistent space for office hours on a weekly basis, bi-weekly educational meetings with peers, and support group meetings with all programs each week. Given the long-term commitment nature of coalition efforts, this role can be more involved and require a specific array of capacity as not all as interested in this work. As such, the leadership opportunities are endless and fall on a spectrum based on individual time, capacity, abilities, and current experience with Parkinson’s symptoms – though it is not solely persons with Parkinson’s who raise their hand to be leaders (i.e. caregivers, care partners, persons who work with persons with Parkinson’s, health professionals such as physical therapists, etc.).


What effect can it have on an individual with Parkinson’s?

These roles are empowering and puts the person with Parkinson’s into the driver seat where a collective is equipped to elevate the voices of persons with Parkinson’s to improve outcomes through funding, advocacy, education, or other access to services.


What would you like to see as a future goal for your programs?

The world has achieved a fully functioning cross-sector network of organizations, resources, and services for Parkinson’s such that each local region, statewide area, national and international areas allow persons with Parkinson’s to live well.


What events do you participate in?

The Davis Phinney Foundation hosts several events around the United States, including educational Victory Summits, HPC Summits for facilitating localized cross-sector collaboration, and participation in events where local partners invite us to table. Our leaders and staff often attend the table and participate in local community events as it works with our foundational capacities.


How does this also assist the caregivers?

Caregivers are a major part of our community leadership and learning! Connie Carpenter-Phinney is extremely active in the foundation’s efforts, and this carries into the programming, creation of resources and development of educational tools. In addition, community action committee leaders are from all devises of life including academic backgrounds, trades, professional careers, and are all linked by the desire to address Parkinson’s through systemic impact.


How can someone get in touch?  What is your website?

You can reach out to me at my Davis Phinney Foundation email,, or fill out the engagement application on the Healthy Parkinson’s Communities (HPC) website to get in touch with our team:


In your opinion what is the key to effective advocacy? 

Collaboration is key and often there are too many barriers or “red tape” to enacting change. It is critical for us as organizations, community entities or groups, leaders, and businesses to work together ass this takes significant changes from our healthcare system to policies on insurance coverages and beyond.


How can we better fundraise to support a cure for Parkinson’s?

Where can organizations collaborate to ensure funds are staying local and we are working to leverage resources versus perpetuate competition? There are so many projects that organizations could collaborate on that would mutually benefit many stakeholders and coordination is needed to define this. In addition to advocating for funding, research, and raising awareness, at the end of the day persons with Parkinson’s need to access resources and limited awareness exists for what is out there unfortunately. As such, we are streamlining projects and programs that can help directly find that cure.


What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?

Practice mindfulness and work using an Anxiety Toolkit to actively recognize patterns, seeking therapy when needed, cooking food at home and eating intuitively, prioritizing being outdoors for walks and hiking, playing with my dog or snuggling with her, and exercising when I can.


Why should people who don’t have Parkinson’s care about this?  

It takes our community collectively with its various skills, experience, and decision-makers to enact change. Persons with Parkinson’s experience changes in symptoms, cognitive capacities, and it is important to have an array of leadership to allow those who need to step back to prioritize their health.


Have you had any family members or relatives affected by Parkinson’s disease?

I do not but chronic health illnesses that require holistic approaches is something I am familiar with, including depression among mental health conditions and lifestyle diseases such as Type II Diabetes. Individuals need to have access to services, resources, healthy foods, support, and require an array to achieve the status of “living well” – therefore, this concept extends to Parkinson’s as well as many other diseases.


If you had one song that would tell us more about you or represent your life, which song would it be? 

Time of the Season by Zombies


If you had one final statement or quote you could leave for the Parkinson’s community, what would it be? 

Whether you are new to Parkinson’s or farther along your journey, you have so much experience to share with the world and raising awareness can look like so many different opportunities. Find your platform and contribute to the shared knowledge.


Is there someone you know that would also like to share their journey or advocacy? What is their name, website, and email?

I am certain all our leaders who are Ambassadors and Community Action Committee Leaders would be interested in sharing their Parkinson’s journey and community activism! We list all our ambassadors and communities on the website, and you can reach out if you would like to be connected with anyone in particular!