NEW YORK, Sept. 17, 2021 /PRNewswire/ -- As part of its commitment to educate the Parkinson's disease (PD) community and to ensure that the breakthrough treatments we seek benefit the widest range of people impacted by PD, The Michael J. Fox Foundation for Parkinson's Research (MJFF) today launches a Spanish-language educational resource — "Parkinson 360: Testimonios Para Pacientes y Familias." To date, most Parkinson's research and care has not served and been fully representative of all people who live with the disease. MJFF is committed to building inclusive on ramps for diverse populations of patients and families to meaningfully engage in education and research. Originally launched in 2016, the newly translated guide — available at michaeljfox.org/parkinson360-espanol — provides patients and families seeking Spanish resources with candid and relatable insights and practical strategies about navigating life with Parkinson's.
Guide Developed by Parkinson's Experts Offers Tips and Wisdom on Navigating the Parkinson's Journey
Originally developed in English by MJFF's Senior Vice President of Medical Communications, Rachel Dolhun, MD, "Parkinson 360: Testimonios Para Pacientes y Familias" was written to include the voices and personal stories of individuals who are living with PD. In addition to the downloadable guide, patients, care partners and loved ones can use michaeljfox.org/parkinson360-espanol as a hub to access additional translated resources, including a webinar and a guide on exploring opportunities to participate in research.
"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," said María L. De León, MD, guide contributor and member of MJFF's Patient Council. "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."
The 58-page "Parkinson 360" guide also offers tips on managing the clinical, emotional and social aspects of the PD journey, including:
- Honest and candid first-hand insights on PD;
- Perspectives on common questions from diagnosis to living with the disease for years;
- Practical tips and strategies to navigate life with Parkinson's; and
- Information on the latest treatment options and a variety of resources to get involved in research.
"Parkinson's 360" in English was made possible through support from the Foundation's Parkinson's Disease Education Consortium. "Parkinson 360: Testimonios Para Pacientes y Familias" was supported by a grant from Genentech, a member of the Roche Group. Funding from our industry partners allows the Foundation to maintain editorial oversight in the creation of high-quality educational resources, while directing donor-raised dollars toward critical research. Additional funding for this translation was provided through the generous support of MJFF Board member Alex Krys, managing member and co-founder of Juniper Capital Partners, LCC, and his brother, Grammy Award-winning producer and MJFF Patient Council member Sebastian Krys.
"In the Latin community, Parkinson's is not something you hear about very much. But practically everybody knows somebody with Parkinson's," said Sebastian Krys. "I'm proud that I have a platform to share my story and journey. Information is everything, and people everywhere — regardless of culture or language barriers — need better access to accurate information and resources."
Building Onramps for Underrepresented Communities is Vital to Advancing Parkinson's Research
Since its inception in 2000, MJFF has worked tirelessly to accelerate promising research breakthroughs and a cure for the estimated 6 million people worldwide with Parkinson's disease. The Foundation is committed to working urgently to help the PD community find, understand and embrace opportunities to partner with researchers in the pursuit of a cure. And yet, to date, most Parkinson's research has not been inclusive of the broader community of people with the disease. As a result, our understanding of how Parkinson's affects patients across racial, ethnic, socioeconomic, gender, sexuality and geographic spectrums is incomplete.
According to the National Institutes of Health, the Hispanic/Latino population represents only 7.6 percent of volunteer enrollees across all clinical research. While there is limited data on the numbers of underrepresented populations specifically in PD research, latest information from the 2020 United States Census showed that Hispanic/Latinos make up 18.5 percent of the United States population, suggesting there is a critical gap of underrepresented groups such as Hispanic/Latinos participating in Parkinson's studies overall. Today, our understanding of PD biology and progression has mainly been in volunteers of European descent. By making research more representative of the community, scientists will have a better understanding of PD, which will lead to strategies for reducing risk and developing treatments benefiting the widest range of patients. Further, across all of research, 85 percent of clinical trials face delays and 30 percent never get off the ground due to a lack of volunteers. It is vital to engage as many individuals as possible to move the dial on breakthroughs in PD, and the Hispanic/Latino community holds a unique value in accelerating critical research forward.
"We know the next five to seven years are instrumental for people and families living with Parkinson's. Our goal is to mobilize the community and connect people to the important role they each play in accelerating better treatments and a cure," said MJFF CEO and Co-Founder Debi Brooks. "There's an explosion currently happening in PD research. To keep up with these advancements and to ensure treatments will work for the widest range of Parkinson's patients, we need to help scientists paint a fuller picture of the disease by engaging with every person and family with Parkinson's."
MJFF is committed to underscore the greatest unmet needs of the Parkinson's community and galvanize researchers to address them. Currently, the Foundation is funding multiple initiatives to make research more inclusive. Since 2018, MJFF has partnered with the Community Access, Recruitment and Engagement (CARE) Research Center at Massachusetts General Hospital and Harvard Medical School on FIRE-UP PD (Fostering Inclusivity in Research Engagement for Underrepresented Populations in Disease). To date, this study has developed culturally relevant messaging and materials in four cities around the country to increase diversity and inclusion in Parkinson's research. With findings from the first phase of the FIRE-UP PD study, researchers will further test and validate factors deterring underrepresented groups from engaging in Parkinson's research. And, MJFF's landmark Parkinson's Progression Markers Initiative study is expanding from nearly 1,400 to more than 4,000 participants around the world — with and without Parkinson's. Select PPMI recruiting sites will begin distributing bilingual materials and offer Spanish-speaking staff to help enroll new participants in the study's pursuit of better understanding how we diagnose, track, treat and potentially prevent PD.
About The Michael J. Fox Foundation for Parkinson's Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding $1 billion in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world. For more information, visit us at www.michaeljfox.org, on Facebook, Twitter, Instagram and LinkedIn.
SOURCE The Michael J. Fox Foundation for Parkinson's Research