Congress Passed the National Plan to End Parkinson's Act

Big news just in from Michael J. Fox foundation

The U.S. Senate today unanimously passed the National Plan to End Parkinson’s Act, the first-ever federal legislation dedicated to ending Parkinson’s disease, sending the bill to President Biden’s desk to be signed into law. The bill passed with overwhelming bipartisan support in the U.S. House of Representatives last December. 

Senate Majority Leader Chuck Schumer (D-NY) announces the passage of the National Plan to End Parkinson's Act in the Senate.

On behalf of the 1 million people living with Parkinson’s disease in the U.S. and their families, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) applauds Congress for this historic step forward in search of improved treatments, and ultimately, a cure for every patient impacted by this disease today and in the future.  

The Parkinson’s community — including tens of thousands of Parkinson’s policy advocates, partner organizations and champions in Congress — rallied together to help policymakers understand just how critical this legislation is. From adding your names to MJFF’s petition, calling and writing representatives and senators, pitching op-eds and sharing your stories on social media — advocates in all 50 states sent more than 70,000 messages to Congress urging their support. And nearly 1,000 advocates joined MJFF to meet directly with their members of Congress.  

We’re especially grateful to the bill’s lead sponsors, Senators Shelley Moore Capito (R-WV) and Chris Murphy (D-CT) and Representatives Gus Bilirakis (R-FL) and Paul Tonko (D-NY) for their exceptional bipartisan leadership in getting this bill passed. We also extend our deepest thanks to Senate Majority Leader Chuck Schumer (D-NY), Representative Jennifer Wexton (D-VA), Senator Bernie Sanders (I-VT), Senator Bill Cassidy (R-LA), House Majority Leader Steve Scalise (R-LA), House Minority Leader Hakeem Jeffries (D-NY), Representative Cathy McMorris Rodgers (R-WA), Representative Frank Pallone (D-NJ) and the many cosponsors from around the country for helping to get this bipartisan bill passed.   

A cross-country strategy to end Parkinson’s has the potential to: 

Dramatically increase federal research funding; 

Develop more effective pathways for treatments and cures; 

Improve early diagnosis; 

Spark new and improved models for patient care; 

Create standards and measures to prevent Parkinson’s disease; 

Address health disparities in diagnosis, treatment and clinical trial participation and 

Enhance public awareness of the disease. 

As the bill heads to the president’s desk, we look forward to continuing our work with policymakers to establish the advisory council and bring the National Plan to fruition for every patient and family impacted by this disease. 

Please join us in thanking the 215 representatives and senators who supported this bill in Congress and read the Foundation's press release to find out more about this historic bill.

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Potential Benefits of Samba Drumming for Parkinson's

Researchers at Cardiff University are hoping to launch a study to discover if there is clinical evidence that drumming classes are improving the lives of Parkinson’s disease patients.

A special samba drum class has been a refuge for Parkinson’s disease patients in Wales where they can move and socialise.

Now researchers in neurogenerative diseases are planning a study to see if samba really can help ease people’s symptoms. 

Parkinson's disease is a degenerative disease caused by a loss of nerve cells. Due to a loss of the chemical dopamine, it affects body movement as well as mental health, according to the World Health Organization (WHO).

Parkinson’s patients experience problems with balance, standing, and walking and sudden rigidity as well as cognitive decline from dementia.

The founder of Sparky Samba, Eirwen Malin, is a Parkinson’s patient herself. She says she started the club after her son went to a samba concert.

“A big issue for people with Parkinson's, they sort of lose that sense of rhythm, they lose the rhythm of walking. Some people have this freezing gait thing where they just suddenly can't go anywhere, especially if you're in a doorway or something,” said Malin.

“And I just thought that the samba rhythms would help them. And I put it out on my Twitter network, which isn't huge, but it is international. And they all said, yes, that's a really good idea, give it a go,” Malin added.

Since then, the class has been receiving government grants which have helped establish several more classes around Wales.

Over the past year, the patients here have reported an improvement in their mood and movement.

“Before samba, I was struggling to get out [of] the chair, so at least I am a bit more mobile now. Not quite so stiff, which is part and parcel of Parkinson's, the stiffness in the joints. I tend to still be leaning over to one side, so I've got to try to prop myself up. But I think without samba I would be struggling,” said Brian Dews, one of the participants in Sparky Samba.

Researchers at Cardiff University are hoping to launch a study to discover if there is clinical evidence that these classes are improving the lives of Parkinson’s disease patients.

Cheney Drew, who works on the university’s drug trials, believes evidence is needed to show exactly what helps Parkinson’s disease patients.

She has previously investigated the impact of drumming on people with Huntington’s disease, another neurodegenerative disorder which can also affect movement.

“One of the reasons that we're doing the trial [is] trying to tease out those complex mechanisms and understanding is actually the drumming itself?” said Drew.

“So there's a phenomenon called rhythmic auditory stimulation which has been shown to improve the way the brain talks to itself and the way that messages are relayed around the brain. But also there may be a social component. We don't know that,” said Drew.

She says controlling for the social component carefully will be important in the experiments to understand how Sparky Samba may be helping Parkinson’s disease patients.

The study will measure symptoms such as freezing of gait and quality of life rather than dopamine levels and other biological symptoms.

“We do look at things called biomarkers, which are biological changes that occur as part of the disease. They are often a really good marker of how the disease is progressing,” said Drew.

“However, we don't have really good biomarkers for Parkinson's yet and so all clinical trials are based on a rating of clinical symptoms. And that will include, as I said, quality of life, motor and cognitive symptoms”.

The study is expected to run for 12 to 18 months.

The WHO has said that more people are becoming disabled and dying from Parkinson’s disease globally. The prevalence of the disease has doubled in the 25 years with at least 8.5 million people having it in 2019.

SOURCE euronews

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Parkinson's Unity Walk 2024

Parkinson's Unity Walk

Saturday April 27th 2024 • 8:30am - 1pm, Central Park, New York, NY

The Michael J. Fox Foundation (MJFF) is thrilled to bring you the 2024 Parkinson’s Unity Walk on Saturday, April 27th, in New York City’s Central Park. Enjoy programming at the Bandshell, explore informational booths featuring industry representatives, national and local groups, and participate in a 1.2-mile walk. Families and friends of all ages and abilities are welcome for all portions of the event!

Let’s come together and walk to end Parkinson’s!

This year, the Parkinson's Unity Walk will be celebrating 30 years of joining as a community and walking together to end Parkinson's disease!

Location:
Central Park, NYC - Naumburg Bandshell
Entrance at East 72nd Street. & Fifth Avenue

Unity Walk Route Map

Free Registration

More info on michaeljfox.org/unitywalk

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Gut Microbiome Changes May Be an Early Sign of PD

New Study Finds That Gut Microbiome Changes May Be an Early Sign of Parkinson's Disease Long Before Traditional Symptoms Appear

The researchers hope these initial findings can help lead to earlier diagnosis (and treatment) of the neurodegenerative disease.

A new study published May 2, 2023 in the journal Nature Communications reveals another possible way we might be able to spot Parkinson's disease early—and even before noticeable symptoms arise.

According to this research, there are noticeable changes in the gut microbiota during the earliest stages of Parkinson's disease, and this may help doctors diagnose and offer targeted treatment before the disease progresses further.

Read article on eatingwell

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World Parkinson's Day and Parkinson's Awareness Month

April 11 is World Parkinson's Day and April is Parkinson's Awareness Month — a time to raise awareness and advance research toward better therapies and a cure for Parkinson's disease (PD). It's also a day to signal your commitment to a future without PD.

Rally your friends and family to make a donation to support PD groups, affordable treatments and finding a cure!

About Parkinson's Disease (PD)

The symptoms of Parkinson’s are mainly from the loss of dopamine-producing nerve cells which control movement. Low levels of dopamine affect how your body moves, making day-to-day activities such as eating, getting dressed or using everyday objects like a phone or computer difficult. The symptoms typically associated with Parkinson’s are tremor, muscle stiffness and slowness of movement, but nothing about PD is typical, everyone will have varied experiences.

Parkinson’s can cause a wide range of non-movement related symptoms including chronic pain, sleep disturbance, constipation, memory concerns, anxiety and depression; all of which can significantly impact quality of life.

Each individual diagnosis is different, a combination of symptoms and side-effects; this makes treating Parkinson’s so difficult.  We need a CURE!

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Parkinson's Hacks Help Man Walk

SCRIPPS News: Man with Parkinson's uses high tech devices to treat symptoms, continue liiving his life.

80% of Parkinson's patients suffer from a symptom called "freezing of gait." It’s when people suddenly lose the ability to take a step. 

SOURCE

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Fundraiser for Parkinson's Unity Walk (Facebook fundraising)

I am raising money for the Parkinson's Unity Walk via Facebook fundraising.  I've chosen this nonprofit because their mission spreads awareness of Parkinson's Disease and distributes to the research organizations listed below. I hope you'll consider contributing. Every little bit will help me reach my goal. I've included information about Parkinson's Unity Walk below.

www.facebook.com/donate/468755728571510/

The Parkinson’s Unity Walk is the largest single-day grassroots fundraiser for Parkinson’s disease research in the United States. Our mission has always been to raise money for Parkinson’s disease research. Thanks to our supporters and sponsors, more than $26.5 million in donations have been raised since the first Unity Walk in 1994 -- 100% of which has funded hundreds of research studies, taking us steps closer to finding a cure for Parkinson’s disease.

All donations are distributed to the following four organizations for the sole purpose of funding research grants: American Parkinson Disease Association, Parkinson’s Foundation, The Michael J. Fox Foundation for Parkinson's Research, and The Parkinson Alliance.

Our Walk is held every April in New York City’s Central Park. In addition to the 1.4-mile wheelchair-accessible walk route, we are a comprehensive event for Parkinson’s disease information and resources.

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