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Rachel Dolhun of The Michael J. Fox Foundation for Parkinson’s Research tells Pharm Exec about how she helps the Foundation to mobilize greater research engagement on both individual and community levels.
Rachel Dolhun, M.D., is Vice President, Medical Communications, at The Michael J. Fox Foundation for Parkinson’s Research. The focus of her role is on providing tools and resources to help people with Parkinson’s make sense of current treatment options and therapies in development, as well as learn more about the critical role they can play in research.
Here she tells Pharm Exec about how she helps the Foundation mobilize greater research engagement on both individual and community levels.
Pharm Exec: By raising awareness of better diagnostics and treatments for dementia, critical given our aging population, how will this change the way pharma companies look at geriatric care?
Rachel Dolhun: Estimates vary, but across diseases, there are approximately 50 million people living with dementia globally. And of the 6 million worldwideliving with Parkinson’s, 40 percent may experience dementia and 25 percent may experience milder cognitive changes as a symptom of their disease. With an aging population, and the numbers of people with Parkinson’s expected to double by 2040, treatments for dementia and cognitive changes are a huge unmet and under-addressed need. There are a few treatments available today to ease symptoms of dementia in Parkinson’s, but a cure - something to slow or stop progression - does not yet exist. The projected rise in disease prevalence makes this issue even more pressing. The Michael J. Fox Foundation is working to empower patients and families to learn more about their diseaseand to be proactive in their communication and treatment strategy. This community engagement can then catalyze research participation in groundbreaking clinical studies. Pharma companies should focus on what we can do together. Convening research, sharing results and engaging with patients canaccelerate ideas with the greatest potential to make a tangible impact on patients’ unmet needs.
Brain research has long challenged the pharma industry, so why should companies continue to take risks?
The pharma industry - and the patients and families living with these conditions - can’t afford for pharma not to take these risks.A Parkinson’s diagnosis, especially when it later involves dementia, has a ripple effect not only on patients, but their families, for industry and for society as a whole. The economic burden of Parkinson’s has reached nearly $52 billion in the United States, roughly double previous estimates. The numbers show that when the risks do pay off, they will be huge - not just in terms of dollars, but also in terms of care and our health system.
What could pharma companies learn from The Michael J. Fox Foundation in terms of driving success in brain research in Parkinson’s and beyond into other brain diseases?
At the Foundation, we put patients at the heart of everything we do. In order to cure Parkinson’s and find better treatments, we need to know what it’s like to live with the disease. And so, we’re committed to giving patients and their families a seat at the table, to engage with research and to help fuel the next generation of breakthroughs. Most recently, we launched “Navigating Cognitive Changes in Parkinson’s Disease,” a new guide to educate and empower families about potential symptoms of the disease and to share practical, actionable strategies. The guide was developed in collaboration with patients, care partners and clinicians because their experiences help us better understand the best path forward in Parkinson’s research and care.
What kinds of treatments are most exciting to you in terms of dementia care?
Today, there are therapies that can ease the symptoms of dementia and our research pipeline is brimming with potential treatments that are attacking dementia at its core, from many different angles. At the same time, technology and novel treatments are advancing to improve care and quality of life for patients and families. And people with and without cognitive changes can take control of their brain health. We’re learning more and more about the power of a healthy lifestyle (for example exercise and a balanced diet) for potentially preventing or delaying dementia. We’re starting to cut through the myth that dementia is a normal part of aging and that there’s nothing you can do about cognitive change.
As part of its mission to provide the Parkinson’s community with high-quality resources on every aspect of the disease, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) launched “Navigating Cognitive Changes in Parkinson’s Disease,” a guide to educate patients and families about potential thinking and memory symptoms in Parkinson’s, provides practical strategies to work through cognitive changes, and shares the latest research and therapies. Written by Rachel Dolhun, the guide was developed in collaboration with experts - patients and families who live with Parkinson’s and the clinicians who care for them.
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