An interview with Donna Rajkovic of Team Fox Detroit, on July 25, 2023 by George Ackerman, Ph.D, J.D.
Biography
Donna’s journey with Parkinson’s disease began with a series of misdiagnoses, leading to a life-altering diagnosis in 2012. This revelation ignited her unwavering commitment to fighting the disease and creating a brighter future for herself and others. Her determination led her to participate in the groundbreaking Parkinson’s Progression Marker Initiative (PPMI) study, launched by The Michael J. Fox Foundation in 2010. The PPMI study aimed to identify crucial biomarkers for the onset and progression of Parkinson’s disease, paving the way for improved treatments. In April 2023, a significant breakthrough occurred with the discovery of a new biomarker—a test capable of detecting synuclein pathology.
In 2016, Donna embarked on a new endeavor by establishing Team Fox in the D (Team Fox Detroit), a grassroots community fundraising program of The Michael J. Fox Foundation. Through Team Fox Detroit, Donna provided opportunities for individuals, families, and loved ones affected by Parkinson’s disease in the metro Detroit area to raise awareness and funds for research. Recognizing the ongoing need for support, she founded Fox In The D as an independent 501(c)(3) organization in 2018. Through this initiative, Donna and her team have successfully spearheaded numerous fundraising initiatives, raising over $1.2 million. 100% of the proceeds were donated to The Michael J. Fox Foundation for research programs aimed at finding a cure.
Donna’s impact extends beyond Fox In The D. For over 12 years, she served as the President of The Serbian Sisters Ravanica, a ladies auxiliary group of St. Lazarus Serbian Orthodox Church. Additionally, for a decade, she held the position of second Vice President on the Church’s Executive Board. In these roles, Donna focused her efforts on funding youth programs, supporting the Church, and actively participating in community food drives for the homeless. Her contributions have positively impacted her local community and have made a meaningful difference in the lives of those in need, both locally and internationally.
As Donna’s Parkinson’s disease progresses, and with an upcoming surgical revision of her deep brain stimulator (DBS), she has made the difficult decision to step down from her executive roles. However, her passion for philanthropy remains undeterred, and she will continue to participate in various charitable endeavors whenever and wherever possible.
Supported by her loving family, Donna finds strength and support in her 32-year marriage to Mike and the remarkable bond they share with their three sons, Stevan, Daniel, and Alan. Her family has not only enriched her personal life but has also fueled her unwavering dedication to making a positive impact and creating a better world for future generations.
Through her philanthropic endeavors and unwavering support, Donna strives to inspire others to take action, drive change, and cultivate hope for a brighter future.
Please tell me a little about your background and what got you involved with awareness.
In 2012, after years of being misdiagnosed, I finally received a diagnosis of Parkinson’s disease, thanks to a DaTScan and my persistent symptoms. Upon learning my diagnosis, I felt the need to make a positive impact on myself and others suffering with the disease, so I decided to participate in the Parkinson’s Progressive Marker Initiative (PPMI) study funded by The Michael J. Fox Foundation for Parkinson’s Research.
MJFF launched the Parkinson’s Progression Markers Initiative in 2010 at 18 clinical sites in the United States and Europe. A longitudinal observational study, PPMI has built the most robust dataset and bio sample library ever assembled in Parkinson’s research, which is shared with the broader research community in real time for ongoing discovery and validation studies. Today the study has enrolled nearly 2000 participants and is actively enrolling Parkinson’s patients, at-risk individuals, and control volunteers at 51 clinical sites around the globe. Study data are downloaded by researchers worldwide for independent studies on average 2200 times a day. The study was designed to search for a biomarker that can objectively diagnose the disease by studying Parkinson’s progression in patients. This would not only prevent misdiagnosis in patients but could also lead to better treatments and potentially, a cure.
The primary objective of the study is to identify a biomarker that can objectively diagnose Parkinson’s disease by closely studying its progression in patients. Such a biomarker would not only prevent misdiagnoses but also hold the potential to improve treatment methods and, ultimately, contribute to finding a cure.
So, was it all worth it? Eleven years later, on April 12, 2023, the Foundation announced a biomarker BREAKTHROUGH, a tool, called the a-synuclein seeding amplification assay, which can detect pathology in spinal fluid not only of people diagnosed with Parkinson’s but also in individuals who have not yet been diagnosed or shown clinical symptoms of the disease. As a long time PPMI participant, and a fundraiser, I was invited by the Foundation to participate in their podcast about the human stories behind the Parkinson’s biomarker breakthrough.
Can you tell me more about your advocacy?
After enrolling myself in the research study, my husband and I attended several impactful events hosted by The Michael J. Fox Foundation in New York. These events brought together patients from across the nation who not only participated in research but also took the initiative to raise funds for furthering the Foundation’s research efforts. Inspired by their dedication, I felt compelled to deepen my involvement. As a result, in 2016, I took the initiative and established Team Fox Detroit. Alongside an organizing committee, our primary objective was to raise funds to support The Michael J. Fox Foundation’s vital research initiatives. Since then, I’ve been wholeheartedly committed to advancing their cause and contributing to the fight against Parkinson’s disease.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Through Team Fox Detroit, we raise awareness about Parkinson’s disease and instill hope for a cure. As we continued to make progress in fundraising for research, it became evident that our community needed more than just financial support; they wanted to be optimistic and to play an active role in making a difference. This realization prompted me to establish annual Research Roundtables in the metro Detroit area, where we bring together local experts, physicians, researchers, and representatives from The Michael J. Fox Foundation.
Through these Research Roundtables, our primary objective is to provide patients and their families with the most up-to-date advancements in Parkinson’s research and potential therapies. By facilitating these events, we empower individuals to be well-informed about ongoing studies and inspire them to actively participate in the pursuit of a cure. In 2018, we also hosted a webinar for Women and Parkinson’s because there is not enough information and discussion around how the disease affects women specifically.
Ultimately, our goal is to infuse hope and a sense of purpose within the Parkinson’s community, encouraging everyone to join the fight against this challenging condition. Together, we strive to bring about positive change and make a meaningful impact in the journey towards finding a cure.
What type of goals do individuals with Parkinson’s awareness have when working with you?
There are several key goals that are central to their involvement:
Staying Informed: Staying updated with the latest information on promising research trials and the results of current studies. They are eager to know about any potential new treatment approvals that may offer improved options for managing their condition. By staying informed, individuals can make more informed decisions about their healthcare and treatment choices.
Active Involvement in Advancements: They want to be part of the efforts to find better treatments, potential cures, and a deeper understanding of the disease by participating in research. When they participate in our events and activities, they become integral contributors to the fight against Parkinson’s, making a tangible impact in the pursuit of improved outcomes for themselves and others living with the condition.
Positive Support and Community: A supportive network of like-minded individuals who understand their journey, challenges, and aspirations. This positive support system fosters camaraderie, hope, and a shared determination to make a difference. Being part of this community gives them strength and encouragement as they navigate their Parkinson’s journey.
Contributing and Fundraising: They want to go beyond mere passive support and be actively involved in raising funds and supporting research initiatives. By participating in our fundraising events, they join forces with others, collectively raising awareness and resources to support vital research. This active contribution allows them to play an essential role in advancing the search for better treatments and a potential cure.
In summary, individuals working with us have a strong drive to stay informed, actively participate in the search for advancements, seek positive support from a supportive community, and contribute to the cause through fundraising efforts. Together, we strive to meet these goals, fostering hope, engagement, and progress in the fight against Parkinson’s disease.
What effect can your advocacy have on an individual with Parkinson’s awareness?
The impact of our advocacy on individuals with Parkinson’s can be profound and far-reaching. By being a part of our advocacy efforts, individuals with Parkinson’s can experience a sense of belonging and empowerment. They are no longer isolated in their journey; instead, they become part of a collective force working towards positive change.
Being involved in our advocacy provides individuals with a platform to actively contribute to finding solutions for Parkinson’s disease. This active participation instills a feeling of purpose and agency, as they are not simply accepting their diagnosis passively but actively engaging in efforts to improve their own lives and the lives of others facing the same challenges.
Crucially, our advocacy offers hope to those affected by Parkinson’s. Witnessing the progress being made in research, the development of new treatments, and discoveries brings a sense of optimism and reassurance that strides are being taken towards better understanding and managing the condition. This hope can be a powerful source of motivation, helping individuals to face their diagnosis with courage and determination.
Additionally, being part of Team Fox creates a supportive community where individuals can connect with others who share similar experiences. This camaraderie provides emotional support, understanding, and a sense of unity, which can be invaluable in navigating the complexities of living with Parkinson’s.
Overall, our advocacy has the potential to positively influence individuals’ outlook on their condition and their overall well-being. By offering hope, empowerment, and a supportive community, we strive to make a meaningful difference in the lives of those affected by Parkinson’s and inspire them to face the future with renewed strength and optimism.
What would you like to see as a future goal for your advocacy?
As a future goal for our advocacy, we aspire to maintain the same overarching objective shared with The Michael J. Fox Foundation, which is to find a cure for Parkinson’s and go out of business. Our ultimate vision is to see a world where Parkinson’s is no longer a burden on individuals and their families, where the disease is effectively treated, managed, or even eradicated entirely.
The idea of “going out of business” refers to achieving this ambitious goal to such an extent that the need for our advocacy and fundraising efforts diminishes. It envisions a future where Parkinson’s disease is no longer a prevalent issue, where groundbreaking research and medical advancements have resulted in effective treatments and a potential cure.
However, while we strive for this long-term vision, we also recognize the importance of the journey itself. Our advocacy will continue to focus on raising awareness, supporting research, and providing resources and assistance to individuals living with Parkinson’s and their caregivers. Each step we take, every dollar raised, and every effort made brings us closer to the realization of our future goal – a world without Parkinson’s disease. Until then, we remain committed to making a positive impact and enhancing the lives of those affected by Parkinson’s as we work tirelessly towards finding a cure.
What events do you participate in?
We actively participate in a diverse range of events to support the Parkinson’s community and raise funds for our cause. Some of these include supporting local Parkinson’s events and other Team Fox initiatives. Additionally, we host various engaging activities throughout the year, such as annual Valentine’s Day, Father’s Day, and Christmas raffles, annual charity golf outings, family bowling events, and research roundtables. Notably, our annual gala in the fall serves as a significant highlight, bringing together our community to celebrate our collective efforts and further our mission in finding a cure for Parkinson’s disease.
How does this also assist the caregivers?
The involvement of caregivers in our committee and events provides crucial support on their caregiving journey. They can actively participate, contribute, and connect with others facing similar challenges, gaining emotional support and valuable insights. Additionally, our events grant caregivers access to resources and expert knowledge, empowering them to enhance their caregiving skills and better care for their loved ones. In essence, their participation ensures they are part of a supportive community and equipped with the necessary resources for their caregiving role.
How can someone get in touch? What is your website?
If someone wants to reach out to us, they can do so through social media such as Facebook, Instagram, Twitter or email at info@teamfoxinthed.com. Our website is www.teamfoxinthed.com.
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
My favorite quote: “Alone we can do so little- together we can do so much” – Helen Keller
Remember, you are not alone on this journey. Embrace the strength of unity and be fearless in sharing your story. You never know who might be experiencing similar challenges, and by opening up, you not only help others but also find healing within yourself.
In this community, there are many voices ready to advocate for those who may not have the strength to speak up. Together, we can make a profound difference, standing strong and supporting each other in the fight against Parkinson’s disease.