An interview with Shelley Kurian, Founder of DFW Parkinson’s Resource on October 16, 2023 by George Ackerman, Ph.D, J.D.
Please tell me a little about your background.
I embarked on my entrepreneurial journey 13 years ago by founding an event management company in Dallas, TX. This experience laid the groundwork for my subsequent ventures into small business consulting and nonprofit leadership. Having always been driven by a passion for philanthropy and service, I seized the opportunity in 2019 to run a corporate nonprofit, leveraging the skills and knowledge I had gathered over the years through my other endeavors. This journey has led me to where I am today – the proud founder of a new nonprofit, DFW Parkinson’s Resource, which serves as a one-stop Parkinson’s resource hub for Dallas/Fort-Worth.
Can you tell me more about your advocacy?
My advocacy centers on guiding those impacted by Parkinson’s through the comprehensive resources needed for effective disease management. I’m deeply committed to ensuring no one feels isolated on this path and that everyone is empowered with the knowledge and resources to live their fullest life. This is what led to the establishment of DFW Parkinson’s Resource. Through this initiative, my aim is to create a stronger, more informed, and connected community for those affected by PD.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My initiation into the world of Parkinson’s came through Skypass Foundation, a corporate nonprofit I had the honor of leading for four years. During my time at Skypass, I created and managed nine programs for people with PD. This experience profoundly connected me to the people and the cause, leading me to discover my calling: harnessing my skills to uplift and support this community.
What type of goals do individuals with Parkinson’s have when working with you?
DFW Parkinson’s Resource was founded to address the pressing query faced by many affected by Parkinson’s: “Where do I begin?” Navigating this journey can be daunting, especially considering the multifaceted care team essential for a person with Parkinson’s. In Dallas, we’re privileged to have a plethora of available resources. However, the challenge often lies in awareness and accessibility. Those working with us aim to gain insights into these resources, enabling them to curate the ideal care team and receive the comprehensive support they need.
What effect can your advocacy have on an individual with Parkinson’s?
- Empowerment through information: By providing a centralized resource hub, those affected by PD are equipped with the knowledge and access they need to available support systems. As the saying goes, knowledge is power – and in this case, it can help reduce fear, uncertainty, and feelings of isolation.
- Streamlined Access to Care: By guiding individuals on where to begin their journey and how to establish a comprehensive care team, the overwhelming process of navigating resources is simplified, which can lead to better care coordination and optimized health outcomes
What would you like to see as a future goal for your advocacy?
I envision a comprehensive support network in DFW where individuals with Parkinson’s can readily access a diverse range of specialists knowledgeable about the disease. Beyond that, I’m particularly driven to address two critical areas: Young Onset Parkinson’s Disease (YOPD) and mental health. Despite the abundance of resources available for the general Parkinson’s population, there’s a noticeable gap in YOPD-centric programs in DFW. Furthermore, in terms of mental health, I aim to spotlight and augment resources for this community, empowering them to proactively seek the help they deserve. At the core of my mission is a simple yet profound aspiration: ensuring every person with Parkinson’s feels acknowledged, valued, and bolstered at every stage of their journey.
What events do you participate in?
In the past, I’ve actively participated in events such as the DAPS (Dallas Area Parkinson Society) Keep Moving Symposium and the Parkinson’s Foundation Moving Day. I’m committed to maintaining my involvement in these events. We just wrapped this year’s symposium put on by DAPS, and I had the privilege of being one of the event sponsors and spreading the word about DFW Parkinson’s Resource. Poetically, the event took place exactly one month after our launch date!
How does your advocacy also assist the caregivers?
We recognize the importance of the caregiver journey and providing support to them is important to us. By providing easy access to local resources, DFW Parkinson’s Resource acts as a guiding light, helping caregivers coordinate and seek the best care options for their loved ones. Additionally, our website features a dedicated section for caregivers, highlighting resources tailored to their unique needs. Furthermore, some of our programs allow for audience-specific filtering, enabling caregivers to effortlessly find support programs designed just for them.
How can someone get in touch? What is your website?
Dfwparkinsons.org
How can others also become advocates for awareness?
Empowering oneself with knowledge, aligning with reputable organizations, and partnering with fellow advocates can lay a great foundation for impactful advocacy. Using social media platforms to generate awareness and attending local events is also a great way to show support. Additionally, I believe that advocacy is most powerful when it’s personal. While a direct experience or familial connection to Parkinson’s can be influential, it isn’t the sole path to personal resonance, and I say this as someone that neither has PD, nor has a family member with PD. Sometimes, forging meaningful bonds with those affected or seeing reflections of oneself or loved ones in their stories can be just as compelling and convicting. Advocacy can come calling at any time, and we have to be ready to answer the call. One of my favorite quotes about advocacy, particularly within the context of finding a personal connection to the cause, comes from one of my mentors, Krish Dhanam:: “The reason to love the young, engage with the middle-aged and tend to the elderly is not a public requirement of society, but a personal recognition of self – that you were, are or will be in all of those stages yourself.”
In your opinion, what is the key to effective advocacy?
Effective advocacy marries passion with strategy and flexibility. True advocacy often springs from a deep-rooted personal passion. This fervor must be accompanied by thoughtful messaging, deliberate choices in partnerships, and continuous engagement that appeals to both the intellect and emotions of the audience. Moreover, adaptability is crucial, given that the needs and dynamics of your target audience may shift over time.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
In facing each day, you embody the true essence of heroism, confronting challenges that many may never understand or appreciate. Within you lies a unique strength and resilience that will always be greater than your Parkinson’s.
