NEW YORK, September 17, 2021 / PRNewswire / – As part of its commitment to educate the Parkinson’s disease (PD) community and ensure that the breakthrough treatments we seek benefit the most people affected by PD, the Michael J. Foundation Fox for Parkinson’s Research (MJFF) today launches an educational resource in Spanish – “Parkinson 360: Testimonios Para Pacientes y Familias”. To date, most of the research and care for Parkinson’s disease has not been used and has not been fully representative of all people living with the disease. MJFF is committed to building inclusive ramps for diverse patient and family populations 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, relevant ideas and practical strategies for navigating life. with Parkinson’s disease.
Guide developed by Parkinson’s disease experts offers advice and wisdom to navigate the Parkinson’s journey
Originally developed in English by MJFF 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 people living with PD. In addition to the downloadable guide, patients, care partners and their families 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. looking.
“A diagnosis of Parkinson’s disease usually comes with many questions. A language barrier should not prevent people or families living with Parkinson’s disease from getting the answers they need, ”said María L. De León, MD, guide contributor and member of the MJFF Patient Council. “As a community, we need to understand the experiences and cultures of all people living with this disease to foster dialogue with patients. 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 advice on managing the clinical, emotional and social aspects of the PD journey, including:
- Honest and candid first-hand information about the PD;
- Perspectives on common issues, from diagnosis to living with the disease for years;
- Practical advice and strategies for navigating life with Parkinson’s disease; 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 with 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 funds raised by donors towards critical research. Additional funding for this translation was provided through the generous support of a member of the MJFF Board of Directors Alex krys, Managing Member and Co-Founder of Juniper Capital Partners, LCC, and his brother, Grammy Award-winning producer and member of the MJFF Patient Council Sebastien krys.
“In the Latin community, Parkinson’s disease is not something you hear a lot about. But pretty much everyone knows someone with Parkinson’s disease,” said Sebastien krys. “I am proud to have a platform to share my story and my journey. Information is paramount, and people everywhere – regardless of culture or language barriers – need better access to information. and specific resources. “
Building ramps for under-represented communities is key to advancing Parkinson’s research
Since its inception in 2000, the MJFF has worked tirelessly to accelerate promising advances in research and a cure for the estimated 6 million people with Parkinson’s disease worldwide. The Foundation is committed to working urgently to help the PD community find, understand and seize opportunities to partner with researchers in the pursuit of treatment. And yet, to date, most research on Parkinson’s disease has not included the broader community of people with the disease. As a result, our understanding of how Parkinson’s disease affects patients across racial, ethnic, socioeconomic, gender, sexual and geographic spectra is incomplete.
According to the National Institutes of Health, the Hispanic / Latino population represents only 7.6 percent of volunteers enrolled in all clinical research. While there is limited data on the number of populations specifically under-represented in PD research, the latest information from the 2020 US Census showed that Hispanics / Latinos make up 18.5% of the population. United States population, suggesting that there is a critical gap of under-represented groups such as Hispanics / Latinos participating in Parkinson’s studies as a whole. Today, our understanding of the biology and progression of PD has mainly focused on volunteers of European descent. By making research more representative of the community, scientists will gain a better understanding of PD, which will lead to strategies to reduce risks and develop treatments that benefit the greatest number of patients. Additionally, in all of the research, 85 percent of clinical trials are delayed and 30 percent never start due to a lack of volunteers. Engaging as many people as possible is essential to advancing PD breakthroughs, and the Hispanic / Latin American community holds unique value in accelerating critical research.
“We know that the next five to seven years will be pivotal for people and families living with Parkinson’s disease. 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 CEO and co. -Founder Debi Brooks. “There is currently an explosion in Parkinson’s disease research. To track these advances and ensure that treatments will work for the greatest number of patients with Parkinson’s disease, we must help scientists paint a more complete picture of the disease by engaging with all person and their family with Parkinson’s disease.
MJFF is committed to highlighting the greatest unmet needs of the Parkinson’s community and galvanizing researchers to address them. Currently, the Foundation funds several initiatives to make research more inclusive. Since 2018, the 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 messages and materials in four cities across the country to increase diversity and inclusion in Parkinson’s research. With the results of the first phase of the FIRE-UP PD study, researchers will test and further validate the factors that deter under-represented groups from engaging in Parkinson’s research. And, the landmark MJFF’s Parkinson’s Disease Progression Markers Initiative study has grown from nearly 1,400 to more than 4,000 participants worldwide, with and without Parkinson’s disease. Some PPMI recruiting sites will begin distributing bilingual material and offer Spanish speaking staff to help enroll new participants in the continuation of the study to better understand how we diagnose, monitor, 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 disease research, the Michael J. Fox Foundation is dedicated to accelerating recovery from Parkinson’s disease and improving therapies. for people living with the disease today. The Foundation pursues its goals through a highly targeted and aggressively funded research program, coupled with an active global engagement of scientists, Parkinson’s disease 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 heart of global Parkinson’s research, the Foundation forges ground-breaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants in Parkinson’s disease clinical trials with its online tool, Fox Trial Finder; promotes awareness of Parkinson’s disease through large-scale advocacy, events and awareness raising; 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
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