Editor’s Note (October 5, 2022): The Michael J. Fox Foundation (MJFF) cordially invites you and your family to our live Spanish webinar, "Navigating the Emotional Journey of a Parkinson's Diagnosis: Information for Patients and Families." We will present reflections from our Foundation Patient Council Members and more on Parkinson's disease, where they will also be able to answer your questions. Looking for more ways to stay connected? We encourage patients and their families to download our free guide and resources on michaeljfox.org/parkinson360-espanol.

Nota del editor (5 de octubre, 2022):  La Fundación Michael J. Fox (MJFF) le invitamos cordialmente a usted y a su familia a nuestro seminario virtual en español, en vivo: “Navegando el Viaje Emocional de un Diagnóstico de Parkinson: Información para Pacientes y Familiares.” Presentaremos reflexiones de nuestros Miembros del Consejo de Pacientes de la Fundación y mas sobre la enfermedad de Parkinson quienes también podrán responder a sus dudas y preguntas.  ¿Busca más formas de mantenerse conectado? Alentamos a los pacientes y sus familiares a descargar la guía y los recursos gratuitos en michaeljfox.org/parkinson360-espanol.

Assigning one label or description to Parkinson’s disease (PD) is difficult as the disease itself is very heterogenous. There’s an old adage in the Parkinson’s community — “when you’ve met one person with Parkinson’s…you’ve met one person with Parkinson’s. This diversity within our community brings us closer to understanding the disease and ultimately a cure.

Celebrating diversity is at the heart of Latino Heritage Month — a time to recognize the histories, cultures and contributions of generations of Americans who came from Spain, Mexico, the Caribbean and Central and South America. At The Michael J. Fox Foundation (MJFF), we’re proud to share the varied stories, experiences and identities of the Latino/LatinX/Hispanic Parkinson’s community who help drive our mission forward to end Parkinson’s disease.

Fellowship trained movement disorder specialist and MJFF Patient Council member, María L. De León, MD, of Nacogdoches, Texas, is an avid research advocate who voices the importance of inclusivity and breaking down barriers to care and research. As a Mexican American woman, María reflects on her personal journey and shared advice for patients and families navigating the disease and seeking culturally relevant resources in MJFF’s “Parkinson 360: Testimonios Para Pacientes y Familias” guide:

“A Parkinson’s diagnosis typically brings with it many questions. A language barrier should not prevent people or families living with Parkinson’s from getting the answers they need. As a community, we must understand the experiences and cultures of all people living with this disease to empower patient dialogue. My advice to patients and families is to become an advocate for your care and disease management — and an important first step wherever you are in the journey is this guide.” 

Recognizing the power of diversity in Parkinson’s research, Ignacio Fernandez Mata, PhD is a neuro-geneticist, assistant professor of molecular medicine at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University and MJFF Third Thursdays Webinar panelist on genetics in PD. Dr. Mata shares how his Spanish roots led him to a passion of including those underserved in research:

“There’s a lot we can learn from studying non-European populations. Exploring our genetics and cultural diversity will ultimately help us better understand the causes of Parkinson’s disease, its progression, as well as our commonalties and barriers to the disease. As the field gets closer to precision medicine, it’s even more important to engage these underrepresented populations in research to help reduce these already existing health care disparities and provide quality care to all individuals regardless of ethnicity.”

MJFF Patient Council member Claudia Revilla, who was diagnosed with young-onset PD at age 45, is an advocate and active Parkinson’s research participant through MJFF’s Fox Trial Finder. Originally from Monterrey, Mexico, Claudia traveled back to her hometown in 2014 to share how Latinos living with Parkinson’s can get involved and why it’s important:

“Our genetic pool is as colorful as our culture and it is because of such a unique ethnicity that we can provide information that can be helpful in finding biomarkers, treatments and the cure for Parkinson’s disease. Back when there was little research, all we had was our abuelita’s (grandma’s) advice and remedies. Today, my advice as an abuelita of the future is to participate in research and then enjoy that cup of chamomile tea.”

Raising more than $135,000 for Parkinson’s research through his annual “Los Producers Charity Show,” MJFF Patient Council member Sebastian Krys is an Argentine-born music producer and distinguished winner of 20 Grammy Awards. Sebastian was diagnosed with PD in 2019 and shares his message on the importance of community to help cure Parkinson’s (#JuntosContraElParkinson):

“I’m proud of the fact that we’re shining a light on something that rarely gets talked about in the Latin community. Information is everything. And people everywhere need better access to accurate information and resources. Disease doesn’t care where you live.”

Running with heart and a passion for friends who become family, Team Fox supporter Crystal Duran of Bolingbrook, Illinois, has crossed many finish lines and athletic feats in support of her friends like MJFF’s “Fox Ninja,” Jimmy Choi. Crystal shares why she laces up her sneakers for Team Fox:

“As a Hispanic person I’ve seen my immigrant family and community fight until the end, keep working hard and caring about the people around us — that’s the Team Fox community to me — they take care of friends, family and the people in our community.”

Throughout Latino Heritage Month and beyond, MJFF celebrates the experiences of our diverse community. Listen to MJFF’s recent Spanish-language webinar, “Mitos y realidades de la Enfermedad de Parkinson.” And continue to browse stories all year long to learn how the Parkinson’s community is working tirelessly to accelerate better treatments and a cure for PD.

Editor’s Note: The Foundation is seeking to grow its diverse community of people touched by Parkinson’s disease. If interested, please email your story to shareyourstory@michaeljfox.org along with the best contact information to reach you. We may share your story in future communications.