Guest blogger Peter Burne is a member of the Parkinson’s Progression Markers Initiative (PPMI) Patient Council. Peter recently attended the annual PPMI meeting in New York City. Below Peter shares his impressions from the meeting and why he decided to get involved.

Early in May I had the opportunity to attend the Parkinson’s Progression Markers Initiative (PPMI) annual meeting held in New York City. PPMI is a five-year international study sponsored by The Michael J. Fox Foundation (MJFF) to identify biomarkers that reveal the progression of Parkinson’s disease (PD). A biomarker is a substance, process or characteristic in the body that is associated with the risk, presence or progression of a disease.  A good example of a biomarker is high blood pressure for potential cardiovascular disease.

There is currently no known biomarker for PD. Finding one would provide scientists with a critical tool to predict, objectively diagnose and monitor the disease. It would also allow researchers to determine which medications work and which do not, important information for pharmaceutical companies that might invest in developing drugs to treat Parkinson’s.    Continue reading “All These People, Working for Us” »

How your brain processes dopamine may define whether you’re more prone to bust your can or sit back and slack.  This, according to a new study from Harvard Medical School and Vanderbilt University published in a recent issue of the Journal of Neuroscience.

WebMD reports that study participants who had higher levels of dopamine in two areas of the brain known to play a role in how we process reward and motivation were busy bees. Those who were less willing to work hard had higher levels of dopamine in a different brain area which is involved in emotion and perception of risk.

Dopamine is a buzz word for people with Parkinson’s disease (PD), whose brains produce lower levels of the neurotransmitter.  While this lack of dopamine itself is known to lead to PD motor symptoms such as rigidity and slowness of movement, it may also create biochemical reactions throughout the brain that can lead to non-motor symptoms such as apathy and depression. Continue reading “Dopamine: Drill Sergeant or Lazybones?” »

Researchers funded by The Michael J. Fox Foundation (MJFF) have identified the best clinical scale for measuring patient response to therapies to treat dyskinesia, the debilitating, uncontrollable movements that are often a side effect of Parkinson’s disease (PD) drugs.

The study, led by co-coordinating principal investigators Chris Goetz, MD, and Glenn Stebbins, PhD, of Rush University Medical Center, demonstrated that the Unified Dyskinesia Rating Scale (UDysRS) most sensitively tracks treatment effect.

Establishing UDysRS as a validated tool for use in dyskinesia clinical trials could have important implications moving forward. In the past, clinicians used several different scales measuring dyskinesia, without any real evidence that they accurately measured if drugs were working. Now, researchers should be able to better design accurate clinical trials to verify that a dyskinesia drug is — or isn’t — working.

It’s an important step toward bringing dyskinesia-targeted drugs closer to pharmacy shelves.

MJFF spoke with Stebbins and Scientific Advisory Board member David Weiner, MD, to gauge what the study results could mean for the development of new dyskinesia therapies, a major unmet need for those living with Parkinson’s today.  Read the entire interview here.  Excerpts are below. Continue reading “Weighing Different Scales: Unified Dyskinesia Rating Scale Comes out on Top, Could Speed Development of New Dyskinesia Treatments” »

In spring 2009, personal genetics company 23andMe announced that it would recruit 10,000 people with Parkinson’s to contribute DNA for research to illuminate the role of genetics in PD. Three years later, 7,500 people with Parkinson’s across 49 U.S. states and 26 countries have joined what has become the largest Parkinson’s community for genetic research worldwide.  23andMe researchers are making progress toward building a greater picture of the underlying causes of the disease, genetic and otherwise.

“23andMe’s unique initiative leveraging DNA technology, the Internet, and patient participation is already enhancing understanding of Parkinson’s disease,” says Todd Sherer, PhD, CEO of The Michael J. Fox Foundation (MJFF). “Ongoing results could open new approaches to developing drugs.”

There are many reasons for conducting genetic studies tied to PD.  One is to better predict an individual’s risk for developing the disease in the long-term.   Another reason is that, by studying genetic mutations, researchers hope to better understand the molecular processes taking place during the course of PD, in both genetic and sporadic cases of the disease. This could lead to improved drugs to counteract these processes.

MJFF has been a publicity partner to the PD Research Community, helping spread the word to people with Parkinson’s about the opportunity to speed research progress by mailing in a saliva sample to 23andMe to collect the DNA it needs to analyze people’s genetics.

Today, Sherer, Michael J. Fox, and Foundation Co-Founder Debi Brooks are visiting 23andMe’s Mountain View, California offices to see the operation first hand.

“The Foundation has played a major role in research progress we’ve made to this point,” says Emily Drabant, PhD, Research Development Manager at 23andMe. “Today’s visit gives us the chance to share updates with Todd, Michael, and Debi personally — and think through opportunities to continue our fruitful collaboration.”

Read on to learn more about some of 23andMe’s advances in research.

Continue reading “Navigating the ‘Many Roads to Rome’: MJFF Partner 23andMe Drives Genetic Research Toward Drugs to Treat Parkinson’s Disease” »

The Michael J. Fox Foundation Partners with Sanofi on Area of Critical Need for People with Parkinson’s Disease

Cognitive dysfunction is a troublesome reality for many people living with Parkinson’s disease (PD). Symptoms can range from slowness of thinking or difficulty organizing and sequencing one’s thoughts to memory loss to the eventual onset of dementia.

Even more troubling is that there are few treatment options for people suffering from these symptoms.

“Parkinson’s drugs that we have today focus mainly on the motor symptoms of the disease,” says David Weiner, MD, a Michael J. Fox Foundation (MJFF) Scientific Advisory Board member. “But for many, cognitive impairment can be a more significant hurdle to navigating daily life. A therapy to treat these symptoms is therefore one of the principal areas of unmet medical need for people with PD.” Continue reading “Cognition-Targeted Research Catches On” »

Denise Dvorak

Similar to many Parkinson’s patients, the road to diagnosis for Denise Dvorak was a long one. But once she finally found out that the symptoms she was experiencing were Parkinson’s disease, this 44-year-old life-long educator quickly set out to find out more about her condition.

Her search for knowledge led her to The Michael J. Fox Foundation’s website, where she immediately noticed different ways that she could take action. As a newly diagnosed patient, the Parkinson’s Progression Markers Initiative (PPMI) caught her eye. Sponsored by The Michael J. Fox Foundation for Parkinson’s Research, PPMI is a landmark study to identify biomarkers, necessary tools to evaluate Parkinson’s disease progression — and to develop disease-modifying therapies. Continue reading “A Personal Investment in PPMI” »

Steve DeWitte

While Steve DeWitte is new to The Michael J. Fox Foundation’s (MJFF) Patient Council, he is not new to patient advocacy. Although his involvement started small, “it quickly grew,” he says. “I started to receive notes of thanks from fellow People with Parkinson’s (PWP) for my efforts on their behalf.” His outreach expanded, once he realized he was making a difference that benefitted others.

Shortly after his Parkinson’s diagnosis in 2005, Steve established a support group for young-onset patients in Connecticut. Membership has grown from eight members in 2006 to more than 150. Alongside a growing number of dedicated volunteers, the Parkinson Young-Onset Support Group of Connecticut incorporated as a 501(c)3 charity last year, and launched a second support group. Continue reading ““Don’t Worry. Keep the Faith:” Optimism about the Options Ahead for Parkinson’s Patients” »

Sunday Night Australia taped exclusive interviews with friends of the Foundation last month, including Parkinson’s Progression Markers Initiative (PPMI) control participant Marc Jaffe, his wife Karen and Dr. Ken Marek, the study’s principal investigator.  PPMI is The Michael J. Fox Foundation’s landmark Parkinson’s biomarkers clinical study.

Dr. Marek explains that the crucial part of PPMI is to be able to understand the disease process so that we can develop drugs to help slow the progression of, or even prevent, the disease.

As a participant in PPMI, Marc explains that as a caregiver for someone who has PD, there is only so much you can do for them.  By participating in PPMI as a control, he is able to give more. Continue reading “Parkinson’s Biomarkers Study Participants Share Their Experience” »

“Parkinson’s comes into someone’s life,” says Co-Founder and Executive Vice Chairman Debi Brooks, “and I think there is a moment in which everyone pauses and asks, ‘What can I do?’ What inspires me at the Foundation today is that there are more and more ways to answer that question. Every day, people are finding their own way to be engaged. Together, our combined efforts make us more powerful.” Continue reading “Parkinson’s Community Answers the Question: “What Can I Do?”” »

Hal during the 2010 NYC Marathon

For Team Fox member Hal Halvorsen, running a marathon wasn’t something he saw in his future.  But then again, neither was getting Parkinson’s.  So in August of 2003, shortly after he was diagnosed, he made the decision to change his “couch potato ways” and started running.  He bought a treadmill, began to walk, then run.  He had never run in his life before, but was soon signing up for his first race.  In October of 2004, he ran a 5K in Baltimore with son Adam for the “Movers and Shakers” which raised money for the National Parkinson’s Foundation.  It was the first time he had raised money for a Parkinson’s organization, and became his first of many races.  He ran a half marathon in 2005 and began to think bigger. “I began to think I could run a marathon.  That’s when I discovered Team Fox.  I found I could raise money for a cure with Team Fox and run the 2007 NYC Marathon.”  Since, Hal’s run the 2009 Boston Marathon and the NYC Marathon again in 2010.

Inspired to raise more funds and awareness for Parkinson’s research, Hal and wife Mary started the Belvidere Fox Trot 5K in 2010 in their community.  Held in April to highlight Parkinson’s Awareness Month, this 5K run and 1 mile community walk is a way for the Halvorsen family to fundraise together and engage the community.  To date, Hal has raised over $13,000 for Team Fox and Parkinson’s research! Continue reading “Team Fox Member Hal Hosts 3rd Annual “Belvidere Fox Trot 5K”” »