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Winners for BEAT-PD DREAM Contest to Better Track Parkinson’s Named

Parkinson's challenge winners

The four winners of the Michael J. Fox Foundation (MJFF) and Sage Bionetworks Parkinson’s disease (PD) challenge to create new ways of using everyday technology to benchmark and predict disease progression remotely — including at home — have been announced.

Called the Biomarker and Endpoint Assessment to Track Parkinson’s Disease (BEAT-PD) Dream Challenge, the contest sought to determine whether Parkinson’s severity and progression can be assessed via sensor data collected as a person goes about daily life.

This year’s contest drew 43 teams, with winners sharing a $25,000 prize.

Teams had access to raw sensor (accelerometer and gyroscope) time-series data, hosted by BRAIN Commons, which they used to predict a patient’s treatment  status and symptom severity.

“We congratulate all the winners,” said Mark Frasier, PhD, senior vice president, Research Programs at MJFF, in a press release. “The Foundation has supported research into sensors and other digital tools for Parkinson’s for many years.”

BEAT-PD “projects are unlocking the potential of data collected by digital devices to help people with Parkinson’s, their physicians, and researchers. Now, more than ever, we understand the critical importance of remote monitoring for the safe and effective delivery of healthcare and the progress of clinical research.”

Winners of the BEAT-PD Challenge are:

The BEAT-PD Challenge built upon a previous data challenge, in which researchers showed that disease status and symptom severity could be predicted using data collected during the physician-monitored completion of certain tasks.

In the BEAT-PD Challenge, scientists sought to learn whether disease severity can be measured via passive sensor data gathered with consumer electronics and collected not during specific tasks, but day-to-day life. The ultimate goal is to be able to monitor disease progression at home.

In their efforts, teams ROC BEATPD, dbmi, and HaProzdor applied signal processing tactics to smartphone sensor data. Allowing for patient-specific characteristics, the results were subsequently used in machine learning models. Guan applied a deep-learning model using spatial and temporal sensor data augmentation.

The winners may now collaborate to optimize their models, and gauge them against clinician-validated symptom severity ratings. They also will co-author a publication on their findings.

Researchers can find more information and can apply to access these data here. Visit this site to learn more about the BEAT-PD Challenge and winners.

To host the challenge, MJFF and Sage partnered with Evidation Health, Northwestern University, Radboud University Medical Center, and BRAIN Commons.

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MJFF Offering Comprehensive Guide for Newly Diagnosed Patients

MJFF guide

The Michael J. Fox Foundation (MJFF) is offering a guide to help people newly diagnosed with Parkinson’s navigate the early days of their disease, and better prepare for the future.

Called “If I Knew Then What I Know Now: The Michael J. Fox Foundation Patient Council’s Guide for People Newly Diagnosed with Parkinson’s,” the resource is meant to provide encouragement, insights, and practical strategies to those living with this disease.

This year alone, about 60,000 people in the U.S. are expected to be diagnosed with Parkinson’s. Compounding matters, many of those diagnoses will come during a global pandemic.

The free 32-page guide was written by five members of MJFF’s Patient Council, which represents the patient perspective and works to educate the community.

Rachel Dolhun, MD, MJFF’s vice president of medical communications and a movement disorder specialist, also contributes tips for managing life with Parkinson’s. Among topics covered are disease information and specialists, building a support system, diet and exercise, and research participation.

“A Parkinson’s diagnosis brings many questions and concerns and a series of inevitable hurdles,” Soania Mathur, MD, guide contributor and Patient Council co-chair, said in a press release. “We may not have a choice in our diagnosis, but how we face those challenges is ours to determine.”

The guide comprises short, mostly first-person articles categorized into sections. A section called “I’ve Got What?” covers the diagnostic process, second opinions, the Parkinson’s journey, inheritance, and causes of Parkinson’s disease.

Another section, “Managing Emotions in the First Days,” has essays about disease acceptance, the relationship between symptoms and stress, and reasons for hope.

“Coming to terms with my Parkinson’s was not something that happened overnight,” one contributor  wrote. “I had to tell myself many times that my diagnosis was here, it was happening now, and it was unavoidable. And that I needed to start planning for what would come next.”

Added Michael J. Fox, the actor who founded MJFF after being diagnosed with Parkinson’s in 1991 at age 29: “My first thought was, ‘What the hell happened to me? What am I going to do?’ That took time to work through, but I found out that if I could accept what my situation was, and be honest about it, I could move forward.

“And my happiness grows in direct proportion to my acceptance,” Fox said.

In “Taking Control of Parkinson’s Disease,” authors discuss the best sources for advice, symptom management, early medication and treatment, caregiving, and making the most of doctor appointments. There is also an article about clinical trial participation, and a column by Bill Rasmussen, a Patient Council member and founder of the U.S. sports channel ESPN, who was diagnosed in 2014.

The guide also includes a question-and-answer section, titled “How and When Will I Know I’m Ready to Share My Diagnosis?” Another section addresses early onset PD, generally defined as a Parkinson’s diagnosis before age 50.

The publication also provides a listing of MJFF resources, covering many aspects of life with the neurodegenerative disorder.

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Fox Foundation Grant to Find Protein Biomarkers for Early Diagnosis

biomarkers

Erisyon, a biotechnology company specializing in the study of proteins, was awarded a grant by The Michael J. Fox Foundation (MJFF) to find and validate potential markers of Parkinson’s disease in its early stages.

The grant, reported to be worth $189,000, will go toward deploying single-molecule protein sequencing to detect and validate protein biomarkers that might inform an early diagnosis. The earlier a person is diagnosed, the sooner treatment can begin.

“Our single-molecule assay will help untangle the mysteries of using alpha-synuclein as a potential biomarker,” Talli Somekh, the company’s CEO, said in a press release. “This technology can help to identify the smaller aggregate proteins that cause Parkinson’s before they form large, insoluble particles in the brain.

“With the support of The Michael J. Fox Foundation, our study aims to quantify very accurately the biomarker for Parkinson’s at a much earlier stage of the disease,” Somekh added.

A Parkinson’s hallmark is the misfolding of the alpha-synuclein protein, which promotes its aggregation into clumps that are deadly to dopamine-producing nerve cells. These cells are responsible for releasing the neurotransmitter dopamine, which is critical for regulating brain cell activity and function.

Focused on personalized medicine and treatment discoveries through a better understanding of proteins, Erisyon aims to commercialize the first single-molecule protein sequencer to upend how disease is detected, treated, and monitored.

A 2018 study into the company’s proprietary new way of sequencing proteins showed the method was more sensitive than existing technology, identifying individual protein molecules instead of requiring millions of molecules at a time. The hope is that this technology — developed by researchers at the University of Texas at Austin — will make it easier to uncover diagnostic biomarkers for Parkinson’s and other diseases, and broaden understanding of how cells function.

Next-generation technology has made sequencing the entire genome of any living organism swift, affordable, and accurate, accelerating biological research. The new technology offers quick and comprehensive information about millions of proteins that play a role in disease and in the normal functioning of cells.

In many disorders, including Parkinson’s, cells produce proteins and other substances that act as unique biomarkers. Better detection of these biomarkers would help scientists understand what causes disorders such as Parkinson’s, allowing more accurate, earlier diagnoses. Molecular biomarkers are gauges that provide insights into a patients’ health, and are key indicators of disease progression and companion diagnostics.

The scientific standard for sequencing proteins is a tool called mass spectrometry, which can detect a protein if there are about a million copies of it. As such, it can be insufficiently sensitive for many applications. Mass spectrometry also it has what is called a low throughput, meaning it can detect only a few thousand distinct protein types in a single sample.

Erisyon reports that its technology, with its single-molecule sensitivity, can isolate and measure blood serum-based biomarkers whose concentrations are below the sensitivity of existing techniques. It also has a high-throughput, being able to measure at least one billion individual proteins in a single sample.

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Podcasts Make It Easier to Stay Informed

podcasts

Living with Parkinson’s disease is a daily battle. It can be difficult to navigate the disease on your own, but the right resources can make staying informed a little easier.

Since many Parkinson’s patients experience tremors on a regular basis, audiobooks and podcasts may be helpful in lieu of books or newspapers. Most podcasts offer quick access to relevant topics and weekly updates about current news and events occurring across the globe. The following talk about the science behind Parkinson’s, but also share personal insights.

The Michael J. Fox Foundation Parkinson’s Podcast

The Michael J. Fox Foundation is known for the work that it does in Parkinson’s research and awareness. This is especially evident in the foundation’s podcast, where you can find interviews with scientists and doctors. There’s also plenty of information about living with Parkinson’s. Interviewees give tips about common ailments associated with the disease and ideas about how to navigate them. One episode features listener questions for doctors. Another discusses the role of inflammation in a Parkie’s day-to-day life. Overall, this podcast is incredibly informative and provides great insight.

When Life Gives You Parkinson’s

In “When Life Gives You Parkinson’s,” Larry Gifford shares his personal journey with the disease. He explores common questions about Parkinson’s, with recent episodes featuring ideas about finding a cure. He also interviews other people who are battling the disease, providing insight from an array of different people. This podcast offers tremendous insight and information about Parkinson’s and what it’s like to live with its challenges. The perspectives make it more personable than your standard news outlet and yet, it can be just as informative.

Trembling EMT: My Parkinson’s Journey

Trembling EMT: My Parkinson’s Journey” discusses the early onset of Parkinson’s and what the process looked like for Eric Aquino, an emergency medical technician who was diagnosed with the disease in 2018 at age 40. The podcast takes listeners through the diagnosis process, treatment, and clinical trials. Clinicians generally don’t have Parkinson’s when they treat the disease, so they may be unable to relate to patients. Listening to a podcast like “Trembling EMT” can provide insight into the journey of another person, who is both a patient and a medical professional.

Substantial Matters: Parkinson’s Podcast

In this podcast, the Parkinson’s Foundation not only provides information about the science behind the disease, it also discusses ways to live with it in a more peaceful away. For example, episodes such as “How Mindful Techniques Impact the Nervous System” talk about the benefits of practicing mindfulness. Focusing on the present moment makes it much easier to navigate mood disorders such as anxiety and depression. This podcast also offers a handful of episodes in Spanish, information about clinical studies, and deep brain stimulation.

Whether you are someone who is navigating the depths of Parkinson’s research or you’re interested in finding personal insights about the disease, podcasts offer a terrific way to access that information. While there is science on some podcasts, others involve casual discussions about the disease. It can help to hear other people’s experiences with the disease — and you don’t have to be a medical professional to host a podcast.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Parkinson’s Expert Offers Tips About Enduring the COVID-19 Pandemic

Parkinson's and COVID-19

An estimated one million Americans have Parkinson’s disease. Nobody knows how many of them also are infected with COVID-19, but the experts do offer sound advice about how Parkinson’s patients can avoid getting sick in the first place.

Rachel Dolhun, MD, is vice-president of medical communications at the New York-based Michael J. Fox Foundation (MJFF). In an April 23 phone interview with Parkinson’s News Today, Dolhun boiled down her advice to six words: stay connected, stay active, stay present.

Rachel Dolhun, MD, is vice-president of medical communications at the Michael J. Fox Foundation. (Photo courtesy of MJFF)

“There are so many ways now that we can connect with other people and be part of a community, even though we’re physically apart,” said Dolhun, a board-certified neurologist and movement disorder specialist who joined MJFF in 2014. “Technology offers us so many routes to be together while socially isolating. We can do virtual chats, or we can just pick up the phone.”

These connections are crucial for people with Parkinson’s, who are at increased risk for many of the symptoms everyone has been experiencing lately — anxiety, depression, and feelings of loneliness and isolation.

Fox, an iconic Hollywood actor, established the foundation that bears his name in 2000, two years after publicly disclosing his Parkinson’s diagnosis at the age of 29. The foundation, headquartered in New York, says that 88 cents of every dollar it raises goes directly to research for Parkinson’s.

As MJFF continues to monitor the COVID-19 pandemic, it will be updating the Parkinson’s community via its COVID-19 Resource Hub, which includes access to webinars live and on demand.

“We at the foundation are offering ways to be with others during this time, whether it’s through Facebook watch parties or sharing through hashtags together while at home,” said Dolhun, who has created a number of tools and resources for patients including the Ask the MD series of blogs and videos, guides for living well, and Parkinson’s 360.

Staying active also is key to maintaining health during the current pandemic, Dolhun said.

“This is so important for overall well-being, but it’s really critical for people with Parkinson’s disease,” she said. “We’ve had to become creative and flexible during this time, by taking classes on line and doing good exercise routines. There’s really been a shift in thinking on staying active, just by going for a walk outside and getting fresh air.”

Turn off the news

Even if that’s not possible because of quarantines and lockdowns, Dolhun said, “you can walk in your own apartment, stand while you’re working, or walk while you’re taking conference calls.”

Equally important as staying connected and active is living in the present.

“Meditation is not for everybody,” Dolhun said. “There are many ways to be mindful. Try to focus on this present moment, what we can do instead of what we can’t do — and being in this moment instead of thinking 27 steps ahead.”

MJFF expert Rachel Dolhun, MD, suggests limiting exposure to news. (Photo by Larry Luxner)

Staying glued to the television, waiting for the latest numbers on coronavirus infections and deaths is not particularly healthy.

“Too much news can lead to anxiety. There’s a lot of news coming out nonstop, and it’s important to stay updated,” she said, warning that there comes a point when enough is enough. “You do not have to be constantly inundated with news. Just look for credible sources.”

Unfamiliar sleep patterns also can lead to anxiety in Parkinson’s, research shows.

“Many people with Parkinson’s were already having problems falling asleep or staying asleep even before coronavirus,” she said. “Now that our routines are off, we’re at home all day. That’s why it’s especially important for people with Parkinson’s to keep a routine, even if they don’t have the same schedule as before.”

Dolhun graduated from the University of San Diego with a bachelor’s degree in biology, got her medical degree from Wake Forest School of Medicine in Winston-Salem, North Carolina, and did her neurology residency and movement disorders fellowship at Vanderbilt University in Nashville, Tennessee. Before joining MJFF, she had a private practice in Charlotte, North Carolina.

Foundation plans COVID-19 survey

MJFF has raised more than $900 million for research about Parkinson’s disease. Since 2017, it has conducted an online study, Fox Insight, which seeks to learn more about life with Parkinson’s by capturing the experiences of people with and without the disease.

Participants complete study visits — online surveys about health, symptoms and lifestyle factors — every 90 days. Fox Insight is open to any English speaker 18 or older, and is the world’s largest Parkinson’s patient-reported outcomes group, with 46,600 participants.

Bastiaan Bloem, neurologist
Dutch neurologist Bastiaan Bloem, MD, is one of the world’s top experts on Parkinson’s disease. (Photo by Larry Luxner)

In coming weeks, the foundation will launch a Fox Insight survey that specifically focuses on the impact of COVID-19 on people with Parkinson’s.

In fact, several leading experts worry that the global COVID-19 pandemic could have immediate, detrimental effects on Parkinson’s patients.

Dutch neurologist Bas Bloem, MD, a professor at Radboud University Nimegen Medical Center in the Netherlands, recently told Parkinson’s News Today that while Parkinson’s patients do not have a higher risk of attracting coronavirus, “we do think they are more at risk of experiencing the severe complications” of this disease.

“We know, for example, that exercise suppresses the symptoms of Parkinson’s, whereas this crisis forces people to stay at home. And it also leads to chronic stress — and Parkinson’s patients are particularly susceptible to the negative effects of stress,” he said.

Bloem and a colleague, Rick C. Helmich, MD, outlined those concerns in a commentary article, “The Impact of the COVID-19 Pandemic on Parkinson’s Disease: Hidden Sorrows and Emerging Opportunities,” that was published April 3 in the Journal of Parkinson’s Disease.

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Redefining My Honeymoon Phase as My ‘New Normal’

clinical studies

This December marked the fifth anniversary of my diagnosis with Parkinson’s disease. Technically, I am still in the honeymoon phase — the first three to eight years of the Parkinson’s journey. Life is still pretty normal. Then again, what is normal?

Normal now consists of inconvenient symptoms including tremors, low blood pressure, rigidity, and anxiety. Oh, and lots of medicine. Taking numerous medications daily was never normal but it is now part of my daily routine, along with exercise. Does my evolving normal mean my honeymoon phase is nearing its end? Maybe. Maybe not. I am choosing to redefine my honeymoon phase as my “new normal.” Life is good, but it’s also different. I have moved from newly diagnosed to patiently awaiting a cure.

‘New normal’ puts us in the Cure-for-Parkinson’s Waiting Room. What should we do?

Keep moving and don’t stop!

My goal is to keep others moving alongside me. It’s easy to get comfortable and coast along, but that won’t get the job done in fighting this disease. Staying consistent and living well with Parkinson’s isn’t easy. It’s especially hard to do it alone. One of the most important tactics in this fight is finding others who share the same journey. Parkinson’s warriors and our coaches look out for one another. Parkinson’s comes at us full force and head-on every day. Together, we push back.

You can educate yourself and participate in the search for a cure through clinical studies, especially early in your diagnosis. The Michael J. Fox Foundation’s Fox Trial Finder is a tool that helps match volunteers with available clinical studies. There are two main types of clinical studies — observational studies and clinical trials. Observational studies involve tracking and collecting data for a better understanding of Parkinson’s. Clinical trials test promising drugs and other therapies.

Although many studies are done in a clinical setting, others are not. One long-term research effort is the Fox Insight study. It is completed online and done from home. Some studies are enjoyable. For example, I participated in a study in which I took a series of guitar lessons over six weeks along with others who have Parkinson’s. Researchers examined the effect of the lessons on quality of life, upper motor function, mood, and cognition. Yes, it was fun and we all became friends. However, it was very challenging. More importantly, researchers received valuable data.

There is a study for everyone!

Ultimately, a cure will be found through us — the people facing the disease every day.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Are You a Victim or a Winner?

victim

When I think of a victim, I think of someone who has had something bad happen to them. A victim could be someone who has been tricked or fooled in some way. Maybe the person has been harmed, or even killed.

Or it could be someone who has been affected by an illness.

Enter Parkinson’s disease

A diagnosis of Parkinson’s disease (PD) is a life sentence. It is an incurable, chronic illness destined to be your companion for the rest of your days. And a not so pleasant companion at that.

But must we take on the role of victim? Because we have been told that we must live with this disease we often loathe, must we live defeated? Must we live as if we have lost the fight against something that begs for control over our body? Give in and give up, throwing to the wind whatever hope we had left?

Enter the winner

A winner perseveres in the game, whether it is soccer, parkour, Monopoly, boxing, or cards. Winners are the champions of their games. A winner wins. They defeat their opponent with ability, strategy, and hard work.

We are playing a game with Parkinson’s disease. It is a never-ending game, and we must work hard and play strategically, giving it our all. Our life depends on it.

How to play the game

As with any game, if you don’t play to win, you most likely will lose. If you don’t play to win at Parkinson’s, you most likely are playing without hope.

Playing without hope is nothing short of a death sentence. It is as if we are deciding that there is nothing better. As if we think we know what the future holds. 

Instead of allowing dark clouds to hover above our heads, we should be playing this game of PD with unfettered hope. A hope that says and believes that someone is out there fighting with and for us. A hope that doesn’t give up.

The Michael J. Fox Foundation mission statement says, “Here. Until Parkinson’s isn’t. We went into business to go out of business. We act with urgency, focus and determination, and won’t stop until a cure is found.”

I don’t know about you, but that gives me hope.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Fox Foundation Offers Guide to Help with Parkinson’s Cognitive Symptoms

cognition and Parkinson's

The Michael J. Fox Foundation (MJFF) is offering a new guide to help people better understand Parkinson’s cognitive symptoms and ways of dealing with them.

The 33-page guide, “Navigating Cognitive Changes in Parkinson’s Disease,” was developed by the MJFF’s Patient Council — which includes caregivers, social workers, and physicians specialized in movement disorders and cognitive function — working together with Parkinson’s patients, their families, and their clinicians.

An hourlong webinar discussing topics addressed in the guide and including a question period is set for Sept. 19 at noon ET. Those interested can register here.

“The goal of this guide is to encourage people with Parkinson’s and their loved ones to learn more about cognitive changes and to take action — whether that’s opening a discussion to lessen fear and improve care or practicing healthy habits to boost brain health,” Rachel Dolhun, the guide’s author, and MJFF’s vice president of medical communications and a movement disorder specialist, said in a press release.

While a diagnosis of Parkinson’s disease is based on characteristic motor symptoms like tremor, slowness of movement, and rigidity, cognitive impairment is a significant non-motor manifestation of the disease.

Among the 6 million people estimated to be living with Parkinson’s worldwide, 40% are likely to develop dementia and 25% may develop milder cognitive changes. “These symptoms are, unfortunately, also some of the least talked about,” Dolhun wrote.

The guide explores different aspects of cognitive function and their roles in daily life, such as executive function, memory, language, attention, and visual-spatial skills. It provides several strategies to help patients and their families keep track of possible cognitive changes, which can be expressed differently in each patient.

It also encourages patients to practice activities known to be good for the body, and thought to also boost brain health. These include exercising regularly, eating a healthy and balanced diet, training the brain with “mind games” or crosswords, getting enough sleep, reducing stress, being socially active, and getting involved with the Parkinson’s or local community.

A large part of the guide is dedicated to dementia, one of the most concerning potential symptoms of Parkinson’s for many patients and their families.

It starts by clarifying what defines dementia, the differences between three causes of dementia — Alzheimer’s disease, Parkinson’s disease dementia (PDD) and dementia with Lewy bodies (DLB) — and current treatment options for this condition.

PDD and DLB share the presence of abnormal protein clumps in the brain known as Lewy bodies, as well as several symptoms. Currently, DLB diagnosis is distinguished from PDD if dementia occurs before or during the first year of motor symptoms related to Parkinson’s.

The guide also provides strategies to work through Parkinson’s cognitive changes and dementia, including: finding a physician with expertise on cognitive changes, being patient and flexible with oneself and one’s difficulties, communicating in an open and honest way, learning as much as one can about the disease, asking for and accepting help from others, joining supportive groups, and participating in clinical research.

Another section offers tips to help caregivers and relatives manage a patient’s hallucinations and delusions, which can be the most difficult manifestation of dementia.

Finally, the guide shares some of the latest information in ongoing research into disease-related dementia.

“The Patient Council welcomed the opportunity to provide input on this new guide in order to offer families the knowledge and resources to talk about a sensitive topic that’s sometimes inadequately addressed at home or even in the doctor’s office,” said Dave Iverson, a founding member of MJFF’s Patient Council and a broadcast journalist.

“More resources, research, and collaboration can help us address the complex issue of cognitive decline and support people who experience it,” said Todd Sherer, MJFF’s CEO.

The free guide, and a complementary video, are available for download here. The Sept. 19 webinar features Dolhun and other disease experts, and members of the Parkinson’s community.

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Parkinson’s Advocates Set to Lobby US Lawmakers for Greater Research Support, Patient Assistance

Parkinson's Policy Forum

Joined by leaders in Parkinson’s (PD) research and public policy, some 150 patients and advocates from across the nation will gather in Washington, D.C., on Monday for the 2019 Parkinson’s Policy Forum.

The annual advocacy event, taking place Sept. 9–10, is presented this year by the Parkinson’s Foundation and The Michael J. Fox Foundation for Parkinson’s Research (MJFF), with support from nine other organizations. With the aim of improving the impact of policy on PD research and care, the forum offers an opportunity for those living with Parkinson’s to not only connect, but to share their journey with elected officials.

”Policy and research must work hand-in-hand to speed scientific breakthroughs for patients and their families,” Todd Sherer, PhD, the Fox foundation’s CEO, said in a news release. “The Parkinson’s Policy Forum brings the community together to advocate for government policies that support research and care. Its goal is to improve quality of life for everyone impacted by the disease today.”

Forum attendees — mostly patients and care partners — will spend a full day with foundation and its scientific and policy experts brushing up on effective advocacy, and exploring ways to help shape their message. They’re off to Capitol Hill the next day, where advocates will apprise legislators of the ways in which policy can help — or hinder — Parkinson’s research and care. They’ll focus specifically on the economic burden of PD, as well as recent legislative moves to limit out-of-pocket prescription medicine costs for Medicare patients, and improve access to mental health services.

The nonprofit organizations said it’s vital that advocates and policymakers seize on current momentum in Parkinson’s, particularly in research and clinical drug testing. By next year, it is estimated that nearly 1 million U.S. residents will be living with the progressive disease.

”People with Parkinson’s disease and their families need legislative action with increased federal research funding to expand access to care that will help patients live healthier lives,” said John Lehr, CEO of the Parkinson’s Foundation. “The Parkinson’s Foundation leverages our nationwide network of healthcare professionals and research advocates to mobilize around PD community policy priorities. To better serve people with Parkinson’s and their families we must ensure they continue to have their voice heard by lawmakers.”

Visit this site for more forum information.

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Fox Foundation Awards $5M to Support Genetic Studies of Parkinson’s in Africa, Asia and India

Fox Foundation grant

With the overarching goal of helping scientists develop and test targeted therapies in Parkinson’s (PD), The Michael J. Fox Foundation (MJFF) is awarding $5 million in grants to three teams conducting genetic studies in African, East Asian and Indian populations.

The funding seeks to broaden these studies in order to better understand the role of genetics in PD onset and progression, and to expand treatment options for patients globally. Historically, the majority of research has focused on people of European descent. The grants will enable genetic testing of samples from more than 30,000 people.

“While the field has made significant strides in genetic research, we know we have more to learn about the changes in DNA that lead to Parkinson’s disease and impact its progression,” Brian Fiske, PhD, MJFF senior vice president of research programs, said a news release. “This is an all-star initiative with world-class geneticists, clinic networks and study volunteers coming together to paint a global picture of Parkinson’s and work toward cures for everyone.”

Since researchers discovered the first genetic mutation linked to PD in 1997, more than 80 others have been identified. Scientists are studying the cellular impact of these mutations, associated with about 15 percent of PD cases, in order to better understand Parkinson’s and possible ways of treating it.

Potential therapies aimed at proteins including LRRK2, one of the most commonly known genetic causes of Parkinson’s, are in clinical trials. Work like this is what the global Parkinson’s genetics program hopes to build upon. The non-profit foundation has long backed genetic studies, and diversity and inclusivity in clinical investigations.

Grants under this global program — with support from the Edmond J. Safra Foundation, a long-time partner of the Fox Foundation — will go to the following projects:

“Parkinson’s is a global issue, and we are grateful to The Michael J. Fox Foundation for fostering representation in research,” said Njideka Okubadejo, a professor of research at the University of Lagos in Nigeria. “We hope this partnership results in greater understanding of disease causes and contributors, and leads to new treatments for people living in Africa and beyond.”

Parkinson’s is the second most common age-related neurodegenerative disorder (after Alzheimer’s), and estimated to affect 7 to 10 million people worldwide.

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