Patients with Parkinson's put on boxing gloves to fight back

STORY BY JACK WADDELL AND PHOTOGRAPHY BY ANNIE RICE
March 25, 2016
 



Courtney Meyers trains Terry Skinner to hit the speed bag at the MU Human Performance Institute. A program called Rock Steady helps patients with Parkinson's disease, a disorder of the central nervous system that affects movement and often causes tremors.


COLUMBIA — Fist after fist, Terry Skinner punched the heavy black bag with all his might. He had 30 seconds left before he got a break, and he looked winded.
He began to hit the bag slower and slower as he started to struggle. Skinner had already worked through several exercises that day, and they were catching up to him.


“Keep going, you’re almost there,” said his trainer, Courtney Meyers. “Don’t give up on me.”
Skinner, 68, a retired director of advising and planning at the Missouri Lottery, isn't the type to give up. He didn't give up during the recent Wednesday boxing session, and he didn't give up after being diagnosed with Parkinson’s disease 10 years ago.
Skinner participates in the Rock Steady Boxing program at the MU Human Performance Institute, an improvised gym in a strip center off Nifong Boulevard. Rock Steady is an exercise program for Parkinson’s patients. It's a multimodal regimen that targets common effects and problems that people with Parkinson’s experience daily.
The boxing sessions are the culmination of a series of stretching, agility exercises and boxing workouts tailored to the struggles each person is having with the disease.
“It’s the hardest workout I’ve ever had,” Skinner said. “It forces you to push yourself, and when you have Parkinson’s, you need to push yourself."Recent research suggests that the boxing workouts promote better overall physical functioning. People like Skinner say it's rigorous, yet fun, and it builds a support system for those with Parkinson's.


Targeting stiffness, flexibility
Rock Steady Boxing is a national program that arrived in Columbia in mid-February. It was the first Parkinson’s boxing program in Missouri, and it has sparked a lot of local interest, said Patsy Dalton, leader of the Columbia Parkinson’s support group. When Rock Steady trainers came to a Parkinson's support group meeting to talk about the program, Dalton said the response was immediate.
“From what I could tell, quite a few people were actively planning to sign up for the program after they talked to their doctor,” she said.
The program is designed for anyone with Parkinson’s, said Becky Edwards, physical therapist and supervisor of Rock Steady Boxing. “We can really tailor the program to anyone just by modifying the activities done during a session,” she said.
The disease has a number of symptoms, and they can be different for each person. The four main motor symptoms are tremors, stiffness, instability and slowness in movement, according to the National Parkinson’s Foundation.
Meyers, a trainer, said the most common symptom is stiffness. It can cause extreme discomfort and affect almost everything a person does. That's why stretching at the beginning and end of a session is so important.
It's not all about boxing. Sessions incorporate actions like sitting down, getting out of a chair or getting up off the floor to help balance and flexibility in problematic situations.
“Anything we do in Rock Steady Boxing is supposed to help people in their daily life and routine,” Meyers said. “It’s the little things that people like you and I don’t have problems with, but they struggle tremendously with, that we target during the boxing.”


Boxing techniques
A session starts with several stretches and agility exercises, but after about 30 minutes, it’s time to really fight back.
The boxers put on big red boxing gloves for various exercises like hitting the heavy bag and punching the trainer’s gloves in a simulated boxing match.
The boxing technique targets all of the symptoms and has proved effective in reducing tremors, Edwards said. Thinking about punching with a certain hand, then coordinating that thought with motion, are the keys. 
“What we’re experiencing is that while they are boxing, a lot of them don’t have tremors,” Edwards said. “And when they do this boxing, it carries over into other activities in life and can reduce the amount of tremors.”
Watching a session, you can see people fall into a rhythm and release much of the stiffness that is obvious at the beginning of a session. Even without seeing them, you could hear them. The voice sometimes weakens with Parkinson's, so auditory exercises are designed to target that problem. 
“We want them to say what they are doing — yell it, or even scream it,” Meyers said.
The boxers will say “jab,” “hook” or “uppercut” as loudly as they can as they execute the motions.
“The overall goal of cheering and shouting is not just to get pumped up but to strengthen their voice," Edwards said. “They feel like they’re being loud because it takes a lot of effort to talk, but, in all actuality, they’re not being loud at all.”
Overall results
Overall, the goal is to reduce the pain and help each person feel better inside and out.
“Right now it’s hard for us to see where our boxers are at because the program is new,” Meyers said. “But we hear people say they feel a lot better, more flexible and better with themselves in general.”
Research shows that Parkinson's progresses more slowly in those who work out. Recent research has found that those engaged in boxing programs, as opposed to traditional workouts, showed even better results.
Stephanie Combs-Miller, a researcher at the University of Indianapolis, followed patients with Parkinson’s over two years and looked at the effects of boxing versus traditional exercise. Her team of student researchers measured the functioning of the participants, and those who boxed were ranked higher in several categories.
“Boxing certainly showed more positive results,” Combs-Miller said. “The people that boxed tended to maintain a higher level of functioning than the other folks, and that’s a big deal with Parkinson’s disease.”
Combs-Miller said this does not mean the boxers got better, though.
“We didn’t see an improvement over the two-year span of time, but they maintained their functioning and weren’t getting worse,” she said. She attributed that to the program's high-intensity and multimodal exercises.
“If you go out walking, you’re only getting one mode of exercise — you’re not varying it very much,” she said. “Boxing is addressing multiple different modes of exercise, so you’re addressing all of the things that people with Parkinson’s are having trouble with.”


Support systems
Dalton's husband has Parkinson's disease. So she knows what she's talking about when she says having a good support system is crucial.
“So many of us are given the diagnosis, but we’re not given very much information on how to handle it,” Dalton said. “It’s a complex disease, and not a lot of people understand it.”
While boxing is about fitness, the routine also gives people a place to meet others who know what they're experiencing.
“They understand each other and know what each other are going through," she said. "In other places, people might not understand them.”
 Combs-Miller agreed with this notion, saying that the camaraderie between the boxers is also helpful in fighting the disease.


“It’s comprised of people with Parkinson’s, and I think that alone can have a huge impact on their quality of life,” she said. “It establishes a cohesive group, and that keeps them motivated to continue boxing.”
Jay Brunk, 62, a boxer who drives to Columbia from St. Genevieve to put on the gloves, was diagnosed about five years ago and said he is pretty functional right now. He's optimistic that the boxing will hinder the progression of the disease.
The other benefit is that he really likes to hit the bag.
“I get a sense of satisfaction,” he said. “I feel like I’m doing something, and I’m doing it well.”


Supervising editor is Katherine Reed.


Check out “Fighting through Parkinson's” by Columbia Missourian on Vimeo.

The video is available for your viewing pleasure at https://vimeo.com/160372155

http://www.columbiamissourian.com/news/patients-with-parkinson-s-put-on-boxing-gloves-to-fight/article_f2a6d450-ef1f-11e5-bf73-c31226057b2f.html

Parkinson's Disease Therapeutics in Major Developed Markets to 2021:

DUBLIN, March 23, 2016 

PD Is the Second Most Common Neurodegenerative Disease Worldwide

  

The global Parkinson's Disease (PD) prevalence was estimated at 16.1 million in 2011, and after Alzheimer's disease it is the second most common neurodegenerative disease worldwide. 

Parkinson's Disease (PD) is a progressive disease and, although not fatal, it can develop severe symptoms and complications that significantly impact upon the patient's quality of life. Symptoms for each stage can be categorized into early, moderate and advanced stages. Major motor symptoms of Parkinson's Disease (PD) include tremors and difficulty walking. Parkinson's Disease (PD) also gives rise to non-motor symptoms, such as dementia, depression, hallucinations and loss of taste and smell. 

There are several different drug classes available to relieve Parkinson's Disease (PD) symptoms. The aim is for treatments to increase dopamine levels, which is substantially diminished in brains affected by Parkinson's Disease (PD). The most common therapies include levodopa, dopamine agonists and Monoamine Oxidase-B (MAO-B) inhibitors, with the choice of therapies dependent on patient symptoms and lifestyle. As the disease develops, the medication will need to be taken more strictly, due to the effect of drugs wearing off (known as off- time), which causes symptoms to return before the next dose. 

With the current marketed drugs focusing primarily on symptomatic relief, Parkinson's Disease (PD) remains incurable, with a huge unmet need for disease-modifying therapies. However, due to the lack of clearly established clinical trial methodologies, replication of the benefits demonstrated by neuroprotective agents in the laboratory to human trials has proved challenging. More importantly, due to an incomplete understanding of the underlying mechanisms that cause the disease, a viable therapeutic target to halt or slow disease progression is currently not in scope, which limits the effectiveness of current product development programs. 

http://www.prnewswire.com/news-releases/parkinsons-disease-therapeutics-in-major-developed-markets-to-2021-pd-is-the-second-most-common-neurodegenerative-disease-worldwide-300240450.html

UPDATE 1-FDA staff says Acadia's drug for Parkinson's disease psychosis is effective

March 25, 2016

U.S. Food and Drug Administration staff members said on Friday Acadia Pharmaceuticals Inc's drug to treat psychosis associated with Parkinson's disease was an effective treatment for the condition.

The drug, Nuplazid, is a new chemical compound and could be the first drug specifically approved in the United States for Parkinson's disease psychosis (PDP). (1.usa.gov/1PuYUCe)

Parkinson's disease is typically associated with impaired motor function.

However non-motor symptoms, such as psychosis characterized by hallucinations and delusions, occur in about 25 percent of Parkinson's patients, said Alan Carr, an analyst with investment banking and asset management firm Needham & Co.

This translates into an addressable population of 250,000 for the drug in the United States, according to Carr.

Existing antipsychotics, including Quetiapine, Clozapine, Risperidone and Zyprexa, are not labeled for use in PDP.

They offer limited effectiveness and are poorly tolerated, which is underscored by a black box warning for increased mortality in elderly patients.

A black box warning is the strongest warning imposed by the FDA, and is designed to call attention to serious or life-threatening risks.

FDA staff members on Friday did not recommend such a warning for Nuplazid.

Nuplazid was granted the FDA's breakthrough therapy status in 2014 on the basis of a late-stage study that showed it reduced psychosis symptoms, with a relatively clean safety profile. (bit.ly/1PuZPCO)

FDA scientists released their report ahead of a meeting on Tuesday of an independent medical advisory panel. While the FDA is not obligated to follow the panel's recommendations, it typically does so. The FDA is slated to decide on the treatment's approval by May 1.

Nuplazid will likely win approval and be adopted as the treatment of choice, some industry analysts have said. (Reporting by Natalie Grover and Arathy S Nair in Bengaluru; Editing by Chizu Nomiyama and W Simon)

http://www.reuters.com/article/acadia-pharm-fda-idUSL2N16X0AU

Mobile Phone App for Parkinson’s Patients Tests New Model for Data Sharing

24 Mar 2016

With mobile phones now practically the third arm of modern (wo)man, researchers have begun to harness the processing power of these increasingly ubiquitous devices for data collection. Because people carry their phones everywhere, they can capture behavioral data on a daily basis. Researchers led by Andrew Trister and Stephen Friend at Sage Bionetworks, a nonprofit research organization in Seattle, developed a mobile phone app called mPower that lets Parkinson’s patients record their movement and memory over time. Such data chronicles the day-to-day variability in symptoms and may help researchers spot trends more quickly, Trister and Friend report in the March 3 Scientific Data. They intend to analyze mPower data to understand medication effects on Parkinson’s symptoms.

“This seems to me an avenue of research well worth pursuing,” John Harrison at Metis Cognition, Wiltshire, U.K., wrote to Alzforum (see full comment below). “This approach may yield interesting information about patient behavior, as well as their responses to treatment.” For example, with advancing disease, Alzheimer’s patients tend to stay at home more, and any device with a GPS could track this behavioral change, Harrison noted.

Along with the publication of their paper, the authors released the first batch of data from the mPower study to researchers worldwide. This was possible because 78 percent of the 12,000 people who participated in the study agreed that qualified researchers could access their data. Allowing research participants themselves to make this decision, a priori, provides a new model that might streamline the process of data sharing, Friend and co-author John Wilbanks, also at Sage, suggest in a Nature Biotechnology editorial. Normally, data-sharing decisions are made by researchers through formal mechanisms such as data access committees. While scientists tend to shy away from saying so on the record, privately, many complain that these committees and their attendant bureaucracy can slow or limit the flow of information to other scientists. mPower represents a pilot project for a new approach to data sharing.

Several academic and industry groups are developing mobile phone apps to collect data from people with various neurodegenerative diseases (see Jun 2012 news; Dec 2012 news). Being a movement disorder, Parkinson’s disease is particularly suited to this type of data collection. Pilot studies have reported success in monitoring various PD symptoms via remote digital devices such as smartphones (see Goetz et al., 2009; Arora et al., 2015). 

These studies inspired the researchers at Sage. Friend co-founded the nonprofit in 2009 along with Eric Schadt of Mount Sinai School of Medicine, New York, to foster collaborative research and develop better models for complex diseases. The organization focuses particularly on neuroscience and cancer research. Trister and Friend wondered if mobile phones could improve disease management by capturing the variability in symptoms and how medications affect symptoms. To test this idea, first author Brian Bot and colleagues developed mPower for the iPhone, using Apple’s ResearchKit software. The authors released the free app in the United States in March 2015 through the Apple App Store. Healthy people as well as Parkinson’s patients were encouraged to download and use it.

Before using the app, participants must read through informed consent materials and decide whether to release their data only for Bot and colleagues’ study, or much more broadly to researchers worldwide. During the first six months after the app’s release, 14,684 people downloaded it and completed the enrollment process. Later, 2,483 people withdrew from the study, and 2,681 opted to share data only with the mPower team. This left data from 9,520 people in the broadly available set. Of those people, 6,805 completed a baseline survey. In that group, 1,087 said they had been diagnosed with Parkinson’s, 5,581 had not, and 137 provided no information on diagnosis.

Once enrolled, participants were asked to fill out the Parkinson Disease Questionnaire 8 and a subset of the Movement Disorder Society Universal Parkinson Disease Rating Scale (MDS-UPDRS) every month. In addition, the app prompted them to complete four activities three times each day: a memory test, walking a short distance, tapping the screen for 20 seconds to test hand coordination and speed, and saying “aaaah” for 10 seconds to track the strength of their voice. The app requested that participants complete one session before taking their medication, one shortly after taking it, and the third at another time of day.

In this initial study, few participants followed through. Only 898 users, of whom 150 were Parkinson’s patients, completed tasks on at least five separate days. About 20 percent of those stuck with the tasks for more than a month. Even so, participants generated hundreds of statistical measures that are allowing the authors to analyze differences in how people respond to medication, Trister wrote to Alzforum. For example, the researchers are investigating how medication affects tremor, as measured by the accuracy of tapping a target spot, versus movement speed and gait, and whether there are distinct patterns of response for different people. The authors hope the findings might eventually improve symptom management. Trister noted that he is working to make the app more useful to patients and to build a community around the study. “We hope these incentives will reduce the attrition rate,” he wrote.

Data for All

The authors released the first six months of data, stripped of any identifying information, through Synapse, a data-sharing service run by Sage Bionetworks. To access the data, outside researchers must establish an account with Synapse, explain what they intend to do with the data, and complete an ethics questionnaire. In addition, they must agree not to try to identify participants, not to sell the data or use it for marketing purposes, and to publish any results in open-access journals.

As Wilbanks and Friend explained in their Nature Biotechnology editorial, they chose this format to facilitate broader use of the data than is typically allowed by a data access committee. Such committees are a common means of controlling data sharing. Usually formed at the universities where the principal investigators work, committees evaluate data requests on a case-by-case basis. However, because these committees represent the interests of the principal investigator, data requests can be met with “high friction,” Friend told Alzforum. “The literature indicates that data access committee mechanisms can encode conflicts of interest, leading to data withholding,” Wilbanks and Friend noted in their editorial (see also Shabani et al., 2015). 

Others agree that data sharing, particularly in human genetics, often falls short. A 2015 Nature editorial cited the example of a breast cancer project, BRCA Share, that touted the ideals of open data while withholding its findings from the public database ClinVar, run by the National Institutes of Health. “In truth, [BRCA Share] creates more of a walled garden of genetic data than an open field,” the editorial concluded.

Similar problems exist in the neurodegeneration field. For some diseases, genetic data sharing has worked well, for example in the Parkinson’s database PDGene. On the other hand, an update of AlzGene, hosted on Alzforum, has been delayed by difficulty obtaining data published in 2013 (see Alzgene; Lambert et al., 2013). 

Some investigators cite participant consent as a roadblock to sharing; however, many research participants express frustraton that data generated from their time, effort, and tissue donations are not shared more readily among scientists. Alison Goate at Mount Sinai School of Medicine wrote to Alzforum, “All Alzheimer’s Disease Research Center/Alzheimer’s Disease Center recruitment currently uses a consent that enables broad sharing of data.” This is mandated by the NIH. Consent is only an issue for genetic samples collected a long time ago, Goate added. For his part, Friend believes that there is a will to share. “I think the Alzheimer’s world wants to be the most cutting-edge place for the sharing of genetic data and for working together as a community. [That vision] hasn’t been fully realized yet,” he told Alzforum.

Data sharing requires standardization and privacy safeguards, researchers noted. Friend pointed out that for general use, data must include the context in which it was gathered, such as whether Parkinson’s movement tests were recorded before or after medication. Data has to be properly annotated, he stressed. For sensitive genetic data, researchers will have to be particularly careful to scrub identifying information and to ensure data is used properly, Friend added. He believes this can be accomplished through streamlined mechanisms like those in the mPower study. In their editorial, Wilbanks and Friend conclude, “Our experience suggests that participants who give their time and their sensitive personal information to researchers often assume that their data will be distributed widely to the full research community, not ‘owned’ as an asset to extract value from, solely by the researchers who happened to collect it.”—Madolyn Bowman Rogers

http://www.alzforum.org/news/research-news/mobile-phone-app-parkinsons-patients-tests-new-model-data-sharing

Harvard-Singapore team unveil potential Parkinson’s cure

March 23, 2016

By Sasha Anthony 

A team of international scientists announced a medical breakthrough in Singapore on Thursday that could improve millions of lives: existing anti-malaria drugs have the ability to treat Parkinson’s disease, according to new research by Nanyang Technological University (NTU) and Harvard Medical School’s McLean Hospital.

Parkinson’s is a fatal degenerative disorder that impacts the central nervous system, causing people to lose control of motor movements. Seven to ten million people worldwide are currently diagnosed with the disease and there is no known cure.

Professor Yoon Ho Sup and his team at NTU

NTU SingaporeAfter screening over 1000 drugs approved by the U.S. Food and Drug Administration, the scientists discovered that chloroquine and amodiaquine—two common anti-malaria treatments—could bind and activate a class of proteins in the brain vital to fight Parkinson’s. Called Nurr1, these proteins protect the brain’s ability to generate dopamine neurons, which are essential to the body’s movement of muscles. Patients with the disease gradually cease the production of dopamine neurons, thus losing motor control.

“Backed by various lines of scientific evidence, Nurr1 is known to be a potential drug target to treat Parkinson’s. Despite great efforts from pharmaceutical companies and academia, no one has managed to find a molecule which can directly bind to it and activate it, except for us,” said Professor Kwang-Soo Kim from Harvard’s McLean Hospital.

Read MoreScientists cure disorders in mice by resetting their brains

In laboratory tests on rats, the team found that by activating Nurr1, the rats with Parkinson’s appeared to have their symptoms alleviated.

Current treatment for the disorder is aimed at replenishing dopamine levels via medication or surgical methods but while these methods improve mobility functions in the early stage, they cannot slow down or stop the disease, Professor Kim explained.

“Our research shows that existing drugs can be repurposed to treat other diseases and once several potential drugs are found, we can redesign them to be more effective in combating their targeted diseases while reducing the side effects,” said NTU Associate Professor Yoon Ho Sup.

Parkinson’s typically affects people over the age of 60, according to the National Institute of Neurological Disorders and Stroke (NINDS), and as countries battle with rapidly ageing populations, cases of neurodegenerative diseases like Parkinson’s are widely expected to rise.

The scientists are now aiming to design better drugs for the disease by modifying chloroquine and amodiaquine with the hope of carrying out clinical trials soon.

http://themedics.info/harvard-singapore-team-unveil-potential-parkinsons-cure/

Emily Andrews’ Parkinson’s disease kitchen aid wins major Powerhouse Museum award

March 24, 2016 1:17am

Kate CrawfordMosman Daily

2015 HSC student Emily Andrews with her award-winning utility board. Picture: Braden Fastier

AS  a Mosman schoolgirl, Emily Andrews took a simple chopping board and designed an effective aid for Parkinson’s sufferers.

She thoroughly researched Parkinson’s disease and extensively tested the kitchen aid — even asking her grandparents to try their hand at the chopping board.

For her efforts, Emily’s design was not only selected by the Powerhouse Museum for its current exhibition of innovative designs by HSC students but also won the top award, the MAAS Innovation in Design Award.

Emily’s invention is on display at the Powerhouse Museum.

Emily designed the chopping or preparation board for her HSC Design and Technology subject last year at Wenona.

She had seen online clips about Parkinson’s disease and recognised that for sufferers with hand tremors, food preparation could be a difficult and risky business.

“I wanted to design something applicable to simple daily activities, something that would be practical but also psychologically empower people with Parkinson’s,’’ she said.

Emily consulted neurologists and also got valuable advice from Clyde Campbell, of Mosman, who has Parkinson’s disease and is the founder of the Shake It Up foundation.

Emily was helped by Clyde Campbell, founder of the Shake It Up foundation.

“The design would also help elderly people so I tested out prototypes on my grandparents and also took the design to a nursing home,’’ she said.

The final design includes a special knife guard, a food caddie to keep food items stable and magnet to hold metal bowls.

Emily hopes that the board will attract the interest of a manufacturer.

The exhibition called Shape 2015 continues at the Powerhouse Museum until May 8. Details: maas. ­museum.com

http://www.dailytelegraph.com.au/newslocal/north-shore/emily-andrews-parkinsons-disease-kitchen-aid-wins-major-powerhouse-museum-award/news-story/47de0f4f58dd86b20f94a37e5d15cdbb

Michael J. Fox Foundation for Parkinson's Research and Parkinson's Action Network Announce Plans for Integration

NEW YORK, March 24, 2016 

The Michael J. Fox Foundation for Parkinson's Research (MJFF) and the Parkinson's Action Network (PAN) announced today that PAN will cease to operate as an independent organization, with PAN integrating into the Foundation so that the two organizations can operate as one to advance public policy priorities and better treatments for people living with Parkinson's disease (PD). The move leverages MJFF and PAN's respective expertise in drug development and public policy in support of the 1 million Americans, and 5 million worldwide, living with Parkinson's — the second most common neurodegenerative disease after Alzheimer's.

"The landscape of Parkinson's therapeutic development has evolved significantly since The Michael J. Fox Foundation was launched in 2000, as have key policy decisions related to health care delivery and reimbursement. The policy and advocacy priorities of people living with Parkinson's have necessarily shifted alongside," said MJFF CEO Todd Sherer, PhD. "Working as a single entity, MJFF and PAN will bring the passion and commitment of our joint community to bear on articulating and advancing key public policy priorities affecting millions of PD patients and families."

A "Continued and Deepened Engagement of the Nationwide Parkinson's Community"


This week, following approval by the Boards of both organizations, PAN filed for dissolution with the California Attorney General, with approval expected within eight weeks. In the coming months, PAN will transition its activities to MJFF as part of the Foundation's new public policy department, which will operate primarily out of Washington, DC. Ted Thompson, who served as president and CEO of PAN from 2014 to 2016, joins MJFF as senior vice president of public policy.

Historically, PAN has served as the unified voice of the Parkinson's community on public policy and advocacy issues. A new Unified Parkinson's Advocacy Council comprises representatives from state, regional and national PD organizations to gather field-wide input on priorities and policy matters. PAN's grassroots leaders program, which has been essential to strengthening local support for policies that benefit patients, will transition to MJFF. A Public Policy Council will provide expert guidance on policy strategies.

"As two patient-founded organizations, PAN and MJFF share a deep respect for keeping patients at the center of our priorities and programs," said Thompson. "We are enthusiastic about the prospects for a continued and deepened engagement of the nationwide Parkinson's community as we plot a new path forward for Parkinson's public policy."

Advances in Drug Development Call for Integrated Public Policy Strategy

Today, more PD drug candidates are reaching late-stage clinical testing and entering complex regulatory and reimbursement approval processes. For some untreated symptoms of Parkinson's disease, such as cognitive decline, regulatory pathways may not yet exist.

MJFF is a key player in the direction and design of many drug trials, and expanding its resources for public policy programming will allow the Foundation to play a more holistic role in partnering with drug developers who until now have navigated such processes and conversations on their own.

"More potential treatments in clinical testing calls for an integrated strategy to help regulators optimally support complex therapeutic development programs, and to ensure sufficient access to new therapies as they come to market," said MJFF CEO Sherer.

Dialogue with Grassroots Community Will Direct Next Steps
This spring, The Michael J. Fox Foundation and the Parkinson's Action Network launched a dialogue with patients and close supporters of both organizations with the goal of ensuring that programmatic activity reflects the top public policy concerns of the community. The conversations began with a webinar and a panel discussion at the annual PAN Forum moderated by journalist Mort Kondracke, a founding member of the boards of both MJFF and PAN. Additional feedback was captured through a survey. The conversation will continue throughout the transition process, with community members invited to share thoughts on policy priorities through the Foundation's closely monitored social media channels including Facebook (facebook.com/michaeljfoxfoundation) and Twitter (@MichaelJFoxOrg).

"This unification clearly builds on the strengths of both organizations," said Kondracke, who joined the Parkinson's advocacy community when his wife, Milly Kondracke, was diagnosed with and ultimately succumbed to Parkinson's disease — an experience recounted by Kondracke in his memoir Saving Milly. "PAN's public policy experience will enhance MJFF's work to find new treatments and a cure, and the MJFF community will amplify PAN's message of advocacy and engagement."

Public Policy Goals Extend Beyond Drug Development
With age the greatest risk factor for Parkinson's, the number of people with the disease is expected to double by 2030. As drug development programs march toward a therapy that can slow or stop progression and better treat symptoms, there is a need for infrastructure and access to support services.

PAN has advocated for legislation such as the Advancing Research for Neurological Disease Act of 2015, which aims to collect data on Parkinson's incidence and prevalence to examine disease distribution and plan for health care services. The organization also lobbies, for example, for repealing Medicare Therapy Caps that limit the physical, occupational and speech language therapy an individual can receive.

MJFF will continue to evaluate and prioritize programs such as these that lay the groundwork for better quality of life for people living with Parkinson's disease.

"It's not just new drugs that are important," said Israel Robledo, PAN Texas state director, a member of the PAN Board of Directors and an MJFF clinical research participation ambassador. "It's anything that improves a patient's quality of life: therapy services, telemedicine, or improved disability policies and veterans benefits. Our grassroots leaders have experience advocating for all of these issues, and we look forward to working with MJFF on these matters."

Learn more about MJFF's public policy work and read a white paper summarizing community priorities for Parkinson's public policy at www.michaeljfox.org/policy.

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 more than $600 million 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.

Information:

Papers filed with California Attorney General's Office for dissolution of PAN as independent 501(c)3

- Key PAN staff will join Foundation as part of MJFF's new public policy team

- Consolidation aims to streamline mission to advance Parkinson's policy priorities and better treatments for 1 million U.S. Parkinson's patients and 5 million worldwide

SOURCE The Michael J. Fox Foundation

Related Links

http://www.michaeljfox.org

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