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Parkinson Voice Project’s Speech and Swallowing Therapy Program Goes Global

Parkinson Voice Project

Samantha Elandary has been dreaming for years of making the Parkinson’s speech and swallowing therapy program she developed in her Dallas, Texas, living room available worldwide.

If she sounds excited these days, it’s because the pace of progress at her nonprofit group, Parkinson Voice Project (PVP), has shifted from a trot to a gallop over the past two years — thanks to initiatives boosting the number of trained U.S. and overseas speech therapists, and making it easier for patients in other countries to obtain course material.

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Parkinson’s patients play a game at a Loud Crowd speech therapy session in Dallas. Parkinson Voice Project CEO Samantha Elandary is standing at left. (Photos courtesy of PVP)

One initiative is an online course that lets speech pathologists take PVP training without coming to Dallas, Elandary told Parkinson’s News Today in a phone interview. Another is making the therapy workbook available online to non-U.S. patients, since the paper version would cost too much to ship.

This summer, PVP also plans to produce its therapist training video, available now in English and Spanish, in other languages, starting with French. In addition, a new grants program is defraying start-up costs for U.S. and overseas clinics that want to introduce PVP, prompting many to join in. The second year of grant winners was announced in April — Parkinson’s Awareness Month.

Yet another initiative is the creation of a $50 million endowment to cover the project’s operating costs and fund its grants program.

All this has led to a surge in the number of therapists and patients using the two components of the project — Speak Out! and its follow-up, Loud Crowd — which are now available in all 50 U.S. states and 13 countries, Elandary said.

Between 2012 and 2017, the project trained about 300 therapists in Dallas, many of them from outside Texas. Since 2017, the combination of the online training course and the grants program — which covers the $289 course fee and other expenses — has quadrupled the number of trained therapists to 1,300. More than 40 were from other countries.

Elandary is thrilled with the progress, although she would be the first to say her team is just scratching the surface, given that the world is home to between 7 million and 10 million Parkinson’s patients. She said the benefits go beyond speech improvement.

“More important than that, the same muscles we use for speaking are the same muscles we use for swallowing,” she said. She noted that swallowing difficulties lead to aspiration pneumonia, accounting for 70 percent of Parkinson’s deaths.

Elandary was born with a cleft palate that gave her firsthand experience with speech difficulties. She entered the University of North Texas in Denton intent on teaching English. But she liked the courses in her speech therapy minor so much that she earned a master’s in the field.

Trial and error

In her first five years of working at a hospital after graduation, she helped patients with speech problems caused by larynx operations, brain injuries, strokes, and Parkinson’s.

Then a supervisor asked her to head the Parkinson’s program. “I loved it,” she said — and her career course was set.

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Samantha Elandary

But the federal government capped Medicare’s therapy benefits in 1998, and “it became very clear that people with Parkinson’s were not going to receive the treatment they needed,” she said.

So Elandary left the hospital that year and opened a Parkinson’s program in her home. Her group sessions started in the living room, but quickly spilled into the dining room, the kitchen, and the back office.

Recognizing the need for a better Parkinson’s speech-improvement program, she began developing one by trial and error.

Her final version has two phases. The first, Speak Out!, consists of 12 weeks of one-on-one therapy to increase voice strength and clarity. Parkinson’s patients lack the neurotransmitter dopamine that controls the speech process automatically, she said. Unless they consciously exercise their voice — what she calls speaking with intent — most lose capacity, speaking too softly, hoarsely, or unintelligibly.

The six-part Speak Out! regimen involves repeating particular sounds in certain cadences, plus reading out load. After completing the first phase, participants move on to Loud Crowd, whose goal is to maintain voice strength through conversations, games, singing and other activities.

Loud Crowd is also a great chance for participants to socialize, said Gay Gilmore, a retired nurse who takes part in the sessions.

“These sessions become a lifeline for many people,” she said. “They keep you in touch with others facing the same challenges — and they help your voice. The program has enabled me to be more in charge of myself, more in charge of what I have to say.”

Gilmore recalled one woman in particular who blossomed after becoming a Loud Crowd member.

“She was really withdrawn at first,” Gilmore said. “But she would brighten a little more at every meeting, and her voice would become a little stronger.” Over time, she had no trouble speaking up — and became talkative, Gilmore said.

Adapting for a worldwide reach

Sticking with Elandary’s initial goal of providing therapy to any patient who needs it, regardless of means, PVP adopted its nonprofit model in 2005. All patients get training free-of-charge. When they finish, they are encouraged to “pay it forward” by donating to the charity.

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Pam Cogburn, a speech therapist at Parkinson Voice Project in Dallas, works with patient Gay Gilmore on a voice-strengthening exercise.

Elandary began a pilot project in 2012 to train two Oklahoma speech therapists so they could replicate the program. Seven years later, 35 Oklahoma speech language pathologists have been trained by PVP. In addition, more than 900 Parkinson’s patients have been treated, and 15 Loud Crowd groups have formed at five hospitals.

Japanese therapists became the program’s first non-U.S. participants in 2013.

But the biggest step in accelerating PVP’s growth worldwide was creating the online training course.

“It was the hardest project I’ve ever done, but it is the one that has finally gotten us making some headway,” Elandary said. It started with her writing a 250-page script, which the charity’s medical advisory board checked “to make sure the neurology was right.”

Then it needed to be filmed and professionally voiced over. Four years and $100,000 later, it was ready.

The online course teaches speech therapists both how to work with patients on exercises, and how to motivate them.

The idea of the grants program came from a Loud Crowd member in Dallas. She wanted to ensure that therapists would not only be trained in Speak Out!, but would also start Loud Crowd programs — since maintaining voice strength is so vital to a Parkinson’s patient’s well-being, Elandary said.

In 2018, the program’s first year, 93 American clinics received grants. So far this year, the number of applications has jumped to 149 — and PVP has already shipped 1,009 patient workbooks to clinics outside Dallas.

“People with Parkinson’s can make such good progress in a short amount of time” with the right therapy, Elandary said. “I hate for them not to have access to this therapy that could really make a difference in their lives.”

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Israeli Scientist’s Robotics Research May One Day Help Parkinson’s Patients

robotics research

For years, Israeli neurologist Tamar Flash has had a fascination with the octopus, and the way the invertebrate’s eight arms propel it effortlessly through the water.

She’s convinced this has major implications for diagnosing and treating Parkinson’s disease — and possible other disorders as well.

“My major interest is the brain’s representation of movement, or the principles underlying the organization, control, and perception of movement by humans,” she recently told Parkinson’s News Today. The octopus has no bones. It’s totally soft. It’s just made of muscles.”

Modeling the movement of the octopus, she said, may eventually help scientists develop “soft” robots for rehabilitation clinics and even nursing homes.

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Israeli neurologist Tamar Flash in her lab at the Weizmann Institute of Science in Rehovot. (Photos by Larry Luxner)

“The first generation of robots were made of steel,” she said. “But if we want robots to help handicapped people, we better make them from soft materials that are hyper-redundant and can come in contact with humans without injuring them.”

She added: “My mother had a stroke. She needs a helper all the time. But robots can help these people get out of a chair and walk with them. Parkinson’s patients fall a lot, but nobody knows how to detect falling. The robot has sensors, so if you have good enough sensors and can predict when the person is starting to fall, you can catch and stabilize them.”

AI leads the way

Flash is a crucial member of the Weizmann Artificial Intelligence Center, a $100 million initiative of Israel’s Weizmann Institute of Science in Rehovot.

“There are major efforts throughout the world to understand how the disease develops,” she said. “We now know that the disease starts maybe years before it shows any symptoms. The misfolding of proteins perhaps starts in the gut and progresses to the brain. We also know that movements obey the laws of motion. You move, and I can understand what you’re going to do. This is something we study in the lab, using motion capture systems and by recording full body movements.”

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Exterior of the Weizmann Artificial Intelligence Center in Rehovot, Israel.

She said Parkinson’s is a movement disorder, affecting the way humans think and perceive the world around them.

“But it’s first and foremost a motor disorder,” she said. “The question I’m interested in is representation of space and time in the brain, connecting perception with action through intelligent behavior.”

Flash said the basic problem with neurological diseases such as Parkinson’s is that there’s no way to quantify movement disorders.

“You go to the doctor, he looks at you and says ‘I think you have Parkinson’s.’ But there are other diseases that look similar,” she said. “He gives you medication but cannot tell you how much you’ve improved. Each disease has its own signature of abnormalities. If you can come up with new tools to identify or even assess the level of performance in patients, this will help in diagnosis. We can help neurologists quantify the deficits.”

Pentagon, EU funds research

Her lab also measures locomotion — not only arm movement but also the ability to walk in a straight line and how the brain coordinates different joints.

“We need a basic understanding of what it means to have intelligence,” she said. “There’s a lot of hype now about artificial intelligence, but if we want to bring the AI revolution to the real world, we need robotics. When we move, to us it seems so simple. But it’s not simple at all.”

A neurologist, Flash has been working in this field since the early 1980s. She studied at Harvard MIT’s division of health sciences and technology, and has a PhD in medical physics. Over the years, Flash’s work has been funded by the U.S. Navy and the Pentagon’s Defense Advanced Research Projects Agency, and more recently by the European Union.

Besides helping Parkinson’s patients, robotics applications include endoscopy, or doing surgery inside the body.

“It would eliminate the need to have a very highly practiced physician. A robot can also do delicate things, and many more surgeries without getting tired,” she said, adding that robots could also help people who have had strokes. “After all, canes are a very old, obsolete technology.”

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Wearable Sensors Help Assess Medication State in Levodopa-treated Parkinson’s Patients

Wearable sensors

Wearable motion sensors can allow doctors to objectively assess medication states in Parkinson’s disease patients being treated with levodopa, a new study shows.

The study, “Assessment of response to medication in individuals with Parkinson’s disease,” was published in the journal Medical Engineering & Physics.

Levodopa is the most common medication used to treat motor impairment in patients with Parkinson’s disease.

Unfortunately, long-term treatment with levodopa causes troubling motor impairments that are attributed to frequent fluctuations in the “on” and “off” periods. This refers to a phenomenon in which patients on levodopa switch between mobility and immobility, the latter developing when the dose has worn “off” but it is not yet time for the next dose.

The current method to address this problem is by adjusting therapy (i.e. medication frequency and dosage). However, this requires the doctor to know when the patient in the on and off state. This information is frequently obtained from patients’ self-reports, which can be biased.

The development of a wearable, sensor-based assessment system that can detect information about patients’ duration in medication on and off states can help improve therapy adjustment for Parkinson’s patients. Not only would this strategy help reduce motor fluctuations, but it would also improve associated healthcare costs.

Researchers from Florida Atlantic University’s College of Engineering and Computer Science have combined an algorithm and a sensor-based assessment system that can detect patients’ responses to treatment and medication states.

To test the system, researchers recruited 19 Parkinson’s patients and mounted two wearable KinetiSense motion sensors on their most affected wrists and ankles.

The team then collected movement signals as the participants performed daily activities, including resting, walking, drinking, dressing, hair brushing, unpacking groceries, and cutting food, in their medication off and on states.

The algorithm was trained using approximately 15% of the data from four activities and then tested on the remaining data. Hence, data from the two sensors can provide objective measurements instead of a patient diary or self-report.

“In a real-life scenario, the developed algorithm will be trained during a patient’s first visit. Then it will be used to detect the response to medication (on/off medication states) on a continuous basis and report objective information about the duration in on and off states to the treating neurologist for remote medication adjustments,” researchers said.

The algorithm was able to detect the response to medication during subjects’ daily activities with an average of 90.5% accuracy, 94.2% sensitivity, and 85.4% specificity.

Furthermore, the algorithm performed equally well for all the activities, with an average accuracy of 91.3% for the activities in the training phase and 88.4% for the new activities.

“The developed sensor-based algorithm could provide objective and accurate assessment of medication states that can lead to successful adjustment of the therapy, resulting in considerably improved care delivery and quality of life of patients,” researchers said.

The authors stress that this approach is novel in that it is customized to each patient rather than a “one-size-fits-all” approach.

“Once the algorithm is trained, it can readily be used as a passive system to monitor medication fluctuations without relying on patient or physician engagement,” Behnaz Ghoraani, PhD, an assistant professor in FAU’s department of computer and electrical engineering and computer science, said in a press release.

“There is a great need for a technology-based system to provide reliable and objective information about the duration in different medication phases for patients with Parkinson’s disease that can be used by the treating physician to successfully adjust therapy,” said Stella Batalama, PhD, dean of FAU’s College of Engineering and Computer Science.

“The research that professor Ghoraani and her collaborators are doing in this field could considerably improve both the delivery of care and the quality of life for the millions of patients who are afflicted by this debilitating neurodegenerative disease.”

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Early Genetic Mutations May Contribute to Mitochondria Dysfunction and Parkinson’s Development, Study Suggests

mitochondria NESCs PD

Genetic mutations and consequent impaired activity of mitochondria — known as the powerhouses of the cell — may be a first step contributing to the development of Parkinson’s disease later in life, a new study suggests.

The study, “Neural Stem Cells of Parkinson’s Disease Patients Exhibit Aberrant Mitochondrial Morphology and Functionality,” was published in Stem Cell Reports.

Parkinson’s disease is characterized by the degeneration and death of a specific group of nerve cells — called dopaminergic neurons —  in the midbrain, which are responsible for producing a neurotransmitter called dopamine. This neurotransmitter acts as a chemical messenger used by nerve cells to communicate.

It remains unclear what exactly triggers these damaging effects, but several studies have provided evidence that both genetic and environmental factors play a critical role.

Mitochondria are small organelles inside cells that provide energy and are known as the cell’s “powerhouses.” Parkinson’s patients are known to have impaired mitochondria activity, which is believed to contribute to the underlying mechanisms of the disease. Still, mitochondria’s role in Parkinson’s disease remains elusive.

An international team of researchers has now found that stem cells carrying a mutated LRRK2 gene —  previously linked to familial and sporadic Parkinson’s cases — recapitulate key mitochondrial defects described only in mature dopaminergic neurons.

The team analyzed 13 cultures of human-derived neuroepithelial stem cells (NESCs) — early progenitors of brain cells — that were obtained from three Parkinson’s patients carrying the mutated LRRK2 gene and four age- and gender-matched healthy donors.

They found that patient-derived NESCs had significantly altered patterns of mitochondrial gene expression compared with NESCs from healthy donors. Also, LRRK2 mutated stem cells had more mitochondria but these had aberrant structures and showed reduced capacity to produce energy. Gene expression is the process by which information in a gene is synthesized to create a working product, such as a protein.

Overall, these findings indicate that mutated LRRK2 “interferes with mitochondrial dynamics, suggesting reduced mitochondrial quality,” the researchers wrote.

Further analysis confirmed that Parkinson’s patient-derived NESCs had increased production of toxic oxygen reactive species (ROS) — involved in oxidative stress — and had reduced survival compared with stem cells from healthy donors, which was consistent with impaired mitochondria activity.

Oxidative stress is an imbalance between the production of free radicals and the ability of cells to detoxify them. These free radicals, or ROS, are harmful to the cells and are associated with a number of diseases, including Parkinson’s disease.

In addition, patient-derived NESCs showed impaired ability to clear these damaged mitochondria, meaning that they were unable to restore the normal mitochondria balance and prevent their toxic effects.

“The detection of these (mitochondria features) in a developmentally early neural stem cell model” supports the hypothesis that “preceding mitochondrial developmental defects contribute to the manifestation of the (Parkinson’s disease) pathology later in life,” the researchers concluded.

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Pilot Project Tests Wrist Device That Monitors Symptoms at Home

wearable technology

A pilot project in the United Kingdom is testing a wrist device that is worn like a watch, called Personal Kinetigraph (PKG), to help Parkinson’s patients and their specialist healthcare providers to monitor their condition at home.

The PKG, developed by Global Kinetics, will be tested in the “Developing Home-based Parkinson’s Care” project, led by researchers at the University of Plymouth and University Hospitals Plymouth NHS Trust (UHPNT).

The wearable technology monitors patients’ motor symptoms, using a proprietary algorithm to process the data. Participants also are asked about their non-motor symptoms, including changes in mood, to supplement the movement data delivered by the PKG.

Patients will wear the device for six-day stints, during which their care team will identify and implement necessary treatment changes. The specialist Parkinson’s team will work remotely to ensure necessary help — calls or clinical appointments — is offered when needed.

In the U.K., current guidelines recommend that Parkinson’s patients see a specialist every six months, no matter the stage of their condition. Care is usually provided by a consultant and community Parkinson’s disease nurse specialist (PDNS).

However, results from a recent survey showed that almost half of these appointments (46%) are delayed by more than six months. In 60% of the cases, patients can go an entire year without an appointment. Some regions of the U.K. don’t have the specialist service, and 50% of vacant PDNS positions are due to long-term sick leave or resignation, the audit showed.

“The UK prevalence of Parkinson’s disease will increase by a fifth by 2025, so the challenges associated with providing a timely and patient-centered service will also be much higher,” Camille Carroll, the project leader and an associate professor at the University of Plymouth’s Institute of Translational and Stratified Medicine (ITSMed), said in a press release.

“The existing service puts a lot of pressure on nurses, and attending clinics is arduous for both patient and carer as it presents logistical and physical challenges that add to burden and distress,” said Carroll, also a consultant neurologist at UHPNT.

“We want to help people with Parkinson’s to live the best lives they can for as long as they can, and this project aims to empower patients to take control of their own condition,” she added.

The project will start with 150 patients from Plymouth city, West Devon and East Cornwall.

“The new project is designed to reduce the burden of attending hospital clinics; improve motor and non-motor Parkinson’s symptoms; ensure appropriate and timely contacts to health-care services; and result in improved quality of life for people with Parkinson’s and their carers,” Carroll said.

“If successful, the intervention will prove a means of providing a resilient and sustainable service faced with the future demands of a condition that is increasing in prevalence and complexity,” she added.

The project also will bring together both clinicians and caretakers by providing “co-design workshops” to ensure that patients’ needs and expectations are assessed and met.

A Parkinson’s patient from Looe who is enrolled in the project is pleased with the device’s ease of use.

“Using the PKG is simple and gives the specialist an easy and quick way of monitoring my Parkinson’s disease remotely. Hopefully the new service design will make life easier for others like myself living with the condition,” John Whipps said.

“One of the hardest things with Parkinson’s is trying to decide when your Partner needs their extra doses of medication. The PKG results help take the guesswork out of that, which is really valuable for ensuring the best care possible,” said Sue Whipps, his wife and caregiver.

The pilot project is being delivered in partnership with the Cure Parkinson’s Trust, Flourish Workplace, Sheffield Hallam University, Global Kinetics Corporation, Parkinson’s UK, Fre-est, Radboud University, the South West Academic Health Science Network (SWAHSN) and UCB Pharma.

It’s been funded with £75,000 ($97,619) from the Health Foundation and £15,500 ($27,176) from a Parkinson’s UK Excellence Network Service Improvement Grant.

“The PKG is an exciting example of how technology has the potential to transform care in conditions like Parkinson’s,” said Julie Dodd, director of Digital Transformation at Parkinson’s UK.

“People tell us that one of the most frustrating things about the condition is how unpredictable it is, no two days are the same, which makes it incredibly hard to plan,” Dodd added.

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Antioxidants Protect Against Levodopa Toxicity, Mouse Study Shows

antioxidants

Antioxidants like vitamin C may protect against the toxic effects of levodopa, researchers report.

Their study, “Reducing oxidative toxicity of L-dopa in combination with two different antioxidants: an essential oil isolated from Rosa Damascena Mill., and vitamin C”, was published in Toxicology Reports.

Levodopa (L-DOPA) treatment effectively reduces early motor symptoms in Parkinson’s disease, but conflicting evidence suggests the therapy may further damage dopamine-producing neurons due to the overproduction of reactive oxygen species, a molecular phenomenon known as oxidative stress.

Oxidative stress is an imbalance between the production of free radicals and the ability of cells to detoxify them, resulting in cellular damage as a consequence of high levels of oxidant molecules.

In theory, combining levodopa therapy with antioxidants may decrease treatment-related side effects and help relieve symptoms.

Investigators from Trakia University in Bulgaria investigated whether L-DOPA-induced oxidative stress could be reduced by combining two distinct antioxidants — an essential oil isolated from Damask rose, and vitamin C.

To do so, healthy mice were divided into four groups. All animals, except the ones in the control group, received two intraperitoneal injections (injected directly into the body cavity) of L-DOPA and, after that, benserazide, a compound that increases the amount of L-DOPA crossing into the brain and its subsequent conversion to dopamine.

Two of the four study groups were pre-treated with injections of either rose oil or vitamin C before they were treated with L-DOPA and benserazide.

Scientists then screened for the presence of oxidative stress by measuring blood concentrations of particular proteins and lipids (fatty acids) that are known oxidative stress markers.

In comparison to the control sample, L-DOPA-only treated animals had a significant increase in molecular markers of oxidative stress, meaning that levodopa treatment induced oxidative stress in healthy animals.

Importantly, those same markers were significantly decreased in both groups pre-treated with antioxidants, compared to control animals.

“It must be emphasized, that Rosa damascene [Damask rose] oil exhibited behavior very similar to the classic antioxidants – vitamin C, making it potential candidates for extensive experimental research to their possible use as protectors against oxidative toxicity triggered by drug therapy of neurodegenerative diseases,” researchers concluded.

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Researchers Receive $1 Million to Identify New Genes Involved in PD

Genes and Parkinson's

A project to identify new genes involved in the development of Parkinson’s disease has received $1 million in funding from the National Science Foundation (NSF). 

The grant will be shared between researchers at Penn State University and the University of California, San Francisco.

Genome wide association studies (GWAS) have had some success in identifying genes that play a role in Parkinson’s disease. This approach involves scanning markers across the complete sets of DNA, or genomes, of many people to find genetic variations associated with a specific disease. Once these genetic associations are found, researchers can use them to develop improved strategies to detect, treat and prevent the disease.

However, this approach is limited as it can identify only a fraction of the genes potentially involved in the disease, and has had limited success in identifying disease-causing genetic variants.

“Genetics can play a key role in understanding the causes of and developing treatments for some diseases,” Benjamin Shaby, assistant professor of statistics at Penn State and one of the project’s researchers, said in a press release. “Studying a single type of genetic information usually results in very poor ability to detect weak signals.”

To circumvent this problem, Shaby and Daisy Philtron, assistant research professor of statistics at Penn State, will develop tools to combine different study approaches — GWAS along with family-based genetic studies — to identify those genetic variants that GWAS may not be able to detect.

“We will develop new models that can study several types of genetic information simultaneously,” Shaby said. “Our approach will allow for integration of disparate data types such as microarray data, genome-wide association data, and pedigree data.”

The researchers will use statistical tools, called hierarchical models, to combine the different sources of information. The model’s principle is that each gene in a person’s genome is inserted into one of three possible groups — the “null group,” the “deleterious group” or the “beneficial group.”

As the name indicates, genes in the “null group” have no link with disease progression, while genes in the “deleterious group” or “beneficial group” have negative and positive roles in disease progression.

The three-group structure has advantages compared to traditional methods of gene analysis. First, the outcomes are not influenced by the simultaneous analysis of thousands of genes; second, it doesn’t exclude data from different experiments, meaning that in the end the results are reinforced.

These two parameters render the new analysis more powerful to detect weak signals, and reduce the risk of false positive results — genes identified as having an effect when in reality they don’t. Also, the model’s structure allows for the ongoing integration of new data.

“The work is exciting because of its inherent flexibility to incorporate new data types as they become available,” Philtron said. “We hope that our integrated analysis will detect important signals that may be missed in analyses of individual data types.”

The project, called “Combining Heterogeneous Data Sources to Identify Genetic Modifiers of Diseases,” will run for five years.

Researchers will use Parkinson’s disease as their model disease, but the newly developed model can then be applied to other complex diseases with a genetic component.

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Parkinson’s Foundation Annual New York Fundraiser Set for May 7

Parkinson's fundraiser

The non-profit Parkinson’s Foundation will host its annual fundraiser, the New York Gala, on May 7, with a goal of surpassing the $750,000 raised last year.

The event’s master of ceremonies will be Willie Geist, host of NBC News’ “Sunday Today with Willie Geist,” and co-host of MSNBC’s “Morning Joe,” who also hosted last year. Geist’s father, Bill, also a veteran television broadcaster, has Parkinson’s.

Featuring a cocktail reception, a live auction, dinner and dancing, the event brings together national leaders in Parkinson’s care, philanthropy, scientific study, business and media. It also will honor corporate leader Alex Gorsky, chairman and CEO of Johnson & Johnson, and Edward G. Rendell, former Pennsylvania governor and former Philadelphia mayor. Rendell announced in 2018 that he has Parkinson’s.

“Receiving expert care from a Parkinson’s specialist has made all the difference in my experience living with the disease,” Rendell said in a press release emailed to Parkinson’s News Today. “I am humbled that the Parkinson’s Foundation would recognize me as an advocate for advancing research, and I am thrilled to join leaders of this community at the Foundation’s gala this year.”

The event, to be held at Cipriani in New York City, is the largest fundraiser of the year for the foundation, which is aimed at advancing research and care for Parkinson’s disease patients, and ultimately finding a cure. Members of the host committee are Karen Elizabeth Burke, MD, PhD; Dick and Sky Field; Devon and Mike Pastor; Arlene Levine; Isobel Robins Konecky; and Stephanie Goldman Rosen.

“The Parkinson’s Foundation is especially excited about this year’s gala as a culmination of the many milestones achieved since our last gathering, such as the launch of our Genetics Initiative,” said John Lehr, the foundation’s president and CEO.

The Genetics Initiative is the first national study to offer free genetic testing, with counseling, for Parkinson’s-related genes. The goal is to track, by next year, the genetic makeup of 15,000 individuals with Parkinson’s across roughly 50 U.S. sites. Genetic testing, which often is not covered by health insurance, may help improve care and identify prospective patients for enrollment in clinical trials.

Since 1957, the foundation has invested more than $330 million in Parkinson’s research and clinical care. According to the foundation, 60,000 U.S. residents are diagnosed with the neurodegenerative disorder each year.

Individual tickets to the gala are $1,250; tables also are available. For more information or to donate to the foundation, contact Katie Dixon at 305-537-9957, or email kdixon@parkinson.org.

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Acadia Supports Events to Mark Parkinson’s Disease Awareness Month in U.S.

Parkinson's Awareness Month activities, Acadia

Acadia Pharmaceuticals is marking Parkinson’s Awareness Month by supporting a host of events and activities in April throughout the U.S. Although some events have occurred, several are annual events needing participation.

“We encourage patients and their families to attend an event, which includes important resources to help them navigate their unique journey with Parkinson’s,” said Steve Davis, Acadia’s CEO, in a news release.

“We are collaborating and pledging our support to Parkinson’s patient advocacy organizations across the country to help make educational events possible year round, because we understand how critical this support and engagement can be for patients and their caregivers,” he said.

World Parkinson’s Awareness Day was April 11.

Sponsored events include:

  • Moving Day walks hosted by the Parkinson’s Foundation. Created in 2011 to celebrate patient movement, and to raise funds and awareness of a disease that affects nearly one million U.S. residents and 10 million people globally, the nationwide events are scheduled for April 27 through May 19.
    The event features a family-friendly walk course, a children’s area, a caregivers’ relaxation tent, and a “movement pavilion” with yoga, dance, Pilates, Tai Chi, and other activities. The money raised helps the foundation deliver quality care, fund cutting-edge research, and provide free resources for patients and their families. To date, the annual walks have raised nearly $22 million. Click here to find a walk or to start one.
    ”Moving Day walks are a critical component of the Parkinson’s Foundation’s efforts to raise money and help improve life for people affected by Parkinson’s disease,” said John Lehr, the foundation’s president and CEO. “We appreciate Acadia’s support to help make events including Moving Day possible.”
  • The American Parkinson’s Disease Association’s Optimism Walks. Designed to mobilize and inspire, each walk of up to three miles is an opportunity for patients and advocates to help the organization raise funds to provide support, education, and research. To date, walks are slated through October. Go here to register or to find a walk.
  • The Davis Phinney Foundation for Parkinson’s Victory Summit. Held this year in Austin, Texas, on April 13, the upbeat educational and motivational symposium featured presentations from leading movement disorder neurologists and therapists.
  • The Parkinson’s Foundation’s Centers for Excellence Leadership Conference brought together all 45 centers to discuss network updates, novel investigations, and the latest Parkinson’s topics. Held this year from April 3–5 in Chandler, Arizona, the conference fostered new ideas and partnerships among clinicians and scientists.
  • The Parkinson’s Association of San Diego Step by Step 5K Walk on April 7 helped the association offer critical resources to roughly 60,000 patients and caregivers in San Diego County, California.

Acadia also continues its support for The Michael J. Fox Foundation (MJFF) Parkinson’s Disease Education Consortium, an alliance of biotechnology and pharmaceutical companies committed to providing high-quality educational resources for the Parkinson’s community.

Acadia is focused on developing and commercializing novel therapies to treat unmet medical needs in central nervous system diseases such as Parkinson’s.

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Treadmill Walking Linked to Greater Gait Stability, Less Cognitive Control in Parkinson’s, Study Says

treadmill test

Treadmill walking, but not over-ground walking, can improve gait stability in patients with Parkinson’s disease, a study has found.

The research, “Treadmill walking reduces pre-frontal activation in patients with Parkinson’s disease” was published in Gait & Posture.

It is widely known that Parkinson’s patients have difficulties preforming learned motor skills automatically, a phenomenon referred to as decreased motor automaticity. Automaticity is the ability to perform movements without having to pay attention to the details of the movement, particularly for actions that require low levels of precision or for movements that are frequently made, such as walking.

Evidence indicates that the gait changes observed in Parkinson’s patients are associated with impaired rhythmicity and increased activation of the prefrontal cortex — a brain area responsible for higher thought processes, such as decision making, planning and reasoning. It’s believed that prefrontal activation occurs to compensate patients’ reduced automaticity.

Researchers from the Tel Aviv Sourasky Medical Center, in Israel, decided to investigate whether treadmill walking, when the pace is determined and fixed, reduced prefrontal activation in Parkinson’s patients (which improves  automatic motor skills) in comparison to over-ground walking.

Twenty Parkinson’s patients (10 men and 10 women; mean age 69.8 years) were asked to walk at a self-selected walking speed over-ground (in a 32-yard corridor) and then on a treadmill. Each walking condition was tested five times.

On the treadmill, patients had to walk for 30 seconds after they reached the steady state for their self-selected comfortable walking speed.

Using a non-invasive imaging technique called functional near-infrared spectroscopy (fNIRS), researchers assessed the participants’ prefrontal activation by measuring the changes in hemoglobin (the molecule in red blood cells that carries oxygen) concentrations within that brain region.

Gait and prefrontal activation were assessed during the two walking conditions in the “on” medication state (when medication does not wear off and motor symptoms are controlled). All participants completed the over-ground trials in approximately 30 seconds each.

Compared to over-ground walking, prefrontal activation was significantly decreased during treadmill walking, as measured by a lower hemoglobin concentration in that brain region.

Gait stability was greater on the treadmill, in comparison to the over-ground walking condition.

“From a clinical perspective, our findings add further support to the idea that training on the treadmill may be useful to improve gait stability while also freeing cognitive resources to allow for more targeted and challenging training such as dual task training,” researchers said. Dual-tasking involves performing a primary motor task, such as standing, and a secondary task, like talking, simultaneously. It is the primary means of assessing the automaticity of a given motor task.

Further research is warranted to assess the mechanisms behind prefrontal activation and how disease severity or medication regimens may influence the body’s response to an external pacemaker, such as treadmill exercising.

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