Thursday, December 23, 2010

A Season of Giving

From Eddie Pelto, Director of Development

Each December, many of us prepare for holiday festivities with family and friends. Sometimes this includes shopping for gifts – it is, after all, the traditional ‘season of giving.’

In keeping with that sentiment, it is also at this time of year that millions of people choose to make their charitable contributions. At PDF, year-end giving accounts for 20 percent of our overall annual revenue. As we have mentioned previously, much of this support comes from individual supporters around the country.

We rely on the generosity of new and returning supporters during the holiday season to make our plans for the coming year. This year alone we were able to give away $5.5 million dollars to researchers in the US and around the world who are searching for a cure for Parkinson’s disease. We could not have done that without the thousands of individual gifts we receive from you.

So at this time of year, we express thanks to those of you who made our programs possible. We also hope that you will remember PDF at this time of year.

If you want your donation to count for 2010 tax-returns, you must act before December 31st. Some last-minute actions you can take to invest today:

  • Charge the donation by credit card. Even though you don't pay the credit card bill until next year, the donation by December 31, 2010, is good for 2010 – you can make your donation securely online at PDF’s website or by simply calling us at (800) 457-6676.
  • Mail a check by Friday, December 31. As long as you put it in the mail, the donation is treated as made in 2010 even though the charity doesn't receive the check or cash it until 2011.
  • Make a gift of stock. If you wish to make a gift of securities please have your broker contact us at (800) 457-6676 to let us know of your contribution – it’s a fast and simple way to make a big difference.
  • Don’t forget matching gifts. Does your employer match contributions? Be sure to check with your human resources department and fill out the simple paperwork which could as much as double or triple your gift to PDF. You can also search for your company on PDF's website.
We consider your gift an investment in the programs that will bring us closer to the goal we all share: to understand and find the cure to Parkinson's disease and related movement disorders; and, for as long as this search continues, to ensure that those individuals and families who live with Parkinson's are able to achieve and maintain the best possible quality of life.

That is truly a gift that keeps on giving.

Happy Holidays!

Friday, October 22, 2010

GMP Stem cells

A recent press release by the California Institute of Regenerative Medicine announced the award of $6 million to the lab of Xianmin Zeng, Ph.D., of the Buck Institute for Age Research and The City of Hope, a small biotech research/treatment center in Californina, to generate human stem cells that may one day be suitable for clinical treatment in Parkinson's. What Dr. Zeng's lab has accomplished - and now has funding to try on a large scale - is the ability to grow and differentiate stems cells using defined culture conditions - an important aspect of Good Manufacturing Practice (GMP) that the US Food and Drug Administration (FDA) requires for any compound that will be used for human therapeutics.

What does "defined" mean? It simply means that one knows exactly what compounds are added to the culture media -- the fluid used to grow and nuture cells. Typically, when scientists grow cells for research use, they use undefined conditions where they don't know exactly what the fluid contains. For example, if you are cooking something that requires a banana flavor, you could chose the defined route of just using banana flavoring in a bottle, which is a single chemical called isoamyl acetate. Alternatively, you could choose the undefined route and use a whole banana, which not only contains isoamyl acetate but a whole bunch of unknown chemicals and proteins.

Why does this matter? Replication and Safety.

  • Replication: Because you don't know exactly what is contained in undefined media, it can be difficult to replicate. A classic example is from the early days of heart physiology. Many early advances in the field were made by Sydney Ringer. He created a defined media but used London tapwater as the source. He ran into difficulty trying to replicate his own experiments using distalled water. Turns out London tapwater has trace amounts of calcium which is essential for normal heart function...and he revised the formula for his now famous Ringer's saline solution.

  • Safety: The safety issue centers around the fact that cells in culture often need various proteins and growth factors...not all of them are known. For research, the convenient answer is to use an undefined media, often this mean using an animal derived serum. Another approach has been to use what are called "feeder cells" which also provide the trace amounts of proteins and growth factors to keep stem cells alive. However, both approaches can expose stem cells to nasty foreign biologic material like viruses (both known and unknown) that could be devisatating if subsequently transplanted in to people.

So the advance Dr. Zeng's lab has made in creating GMP-compliant culture conditions is an important step in moving stem cells closer to use in human therapy.

Friday, October 1, 2010

WPC: Final Thoughts

As the 2nd World Parkinson Congress comes to a close, PDF is humbled and honored to include the following closing thoughts from guest blogger and CRLI/WPC reporter, Diane G. Cook.

World Parkinson Congress: A “Tremor Safe” Zone

“Here at the World Parkinson Congress, we’re in a Tremor Safe Zone.” Those words were spoken by Davis Phinney to describe how it feels to be among thousands of others where it’s okay to have PD. No one notices the drag of foot, the slowness of step, the shakiness of hand, the softness of voice. Everyone does it! No self consciousness here!

But there’s something much more significant happening in Glasgow…it’s tangible. You can feel it in the smiles in the corridors, the instant friendships forged over a question posed of a speaker, the hug from a stranger, the expression of interest in a poster, the spontaneous gathering of people after lectures. There is a commonness of purpose and an honoring of each role in the fabric of how we will help ameliorate symptoms while working for a cure. Physicians, scientists, researchers, executives, nurses, therapists, people with Parkinson's, caregivers and the many others working to fight the devastating effects of this disease on many levels are in one conference hall … learning, exchanging views, questioning, and pushing the agenda forward.

One leaves each session in awe of the great minds at work, clear that there is a role for each one of us, stimulated by the learning, comforted by the cross fertilization of ideas, encouraged by the new partnerships and collaboration being forged, inspired by those overcoming limitations, and thankful that you somehow ended up in this special Parkinson’s disease community.

It doesn’t get any better than this! I, for one, am signed on for 2013 in Montreal and will offer my help in any way I can to make the 3rd WPC a significant step forward for the Parkinson’s community.

As I approach my last day, my focus turns to my next challenge: ”How will I translate the power of the Congress and the urgency of Now into my life back home.”


WPC Posters: More CRLI Grads Present

As we chatted about in a previous post, the 2nd World Parkinson Congress includes two poster sessions, one led by researchers about the science and care of Parkinson's and another led by Parkinson's community members who have made efforts in their community to move the cause forward.

We profiled a few of PDF's CRLI graduates yesterday and wanted to update you on some other individuals who have presented their work. Check out Israel's poster on the left and a list of others who presented during the week.

Israel Robledo
Parkinson’s Outreach. Hope For Tomorrow. Help For Today
(Robledo, I)

Israel works to educate people living with Parkinson’s in Midland, TX about clinical trials and, along with his wife Chris, he recently established a local non-profit to cover the cost of Parkinson’s medications and clinical trial participation for his neighbors in need. His poster discusses his first year of work and the lessens he has learned. Israel says that his participation in the WPC is not only an opportunity to talk about his work, but also to learn about the programs of others around the globe. He remarks,

“Sometimes we [people living with Parkinson’s disease] just live in our little shells because we feel that the disease is beyond us. But it’s not. We can help ourselves and others, too.”

Girija Muralidhar
The Neurowriters’ Guide To The Peripatetic Pursuit Of Parkinson’s Disease (PD): A Preview
Muralidhar, G (United States); Wittekind, P (United States); Kell, P (United States); Huseman, K (United States); Wheeler, J (United States); Brooks, L (United States); Herman, L (United States); Citron, J (United States); Willocks, P (United States); Ashford, L (United Kingdom); Cummings, R (United States)

Jean Burns
Working And Crossing National And Cultural Boundaries To Spread Parkinson’s Awareness
Capitanio, F (Spain); Burns, JE (United States); Martinez, C (United States)

Kate Kelsall and Valerie Graham
Role Of Patient Support In Shaping Expectations And Decision Making With Deep Brain Stimulation (DBS) Surgery
Klepitskaya, O; Kelsall, K; Graham, VW; McRae, CA (United States)

Jean Burns
Grassroots Effort To Make The PD Tulip The National Symbol For Parkinson’s Awareness In The United States
Burns, JE (United States)

WPC Roving Reporters: Day Three Science

The 2nd World Parkinson Congress continues its three days of sessions discussing the latest news in Parkinson’s science and care. PDF’s reporters have been listening in to a variety of these sessions. We've asked them to report back on what they have seen and heard, sharing the messages that mean the most to them as people living with Parkinson’s.

Jackie Hunt Christensen
Attended: Non-Drug Approaches to Treatments for Parkinson’s Disease

"This session covered how some symptoms of Parkinson’s disease might be improved by exercise; physical therapy; speech therapy; and non-drug, cognitive and psychological therapies.
  • Exercise: It was reported that exercise can improve motor performance and induce changes in the levels of dopamine and glutamate (a neurotransmitter that help us with learning, memory and other cognitive processes) and also affect the immune system function. Aspects of this type of exercise program focus on the intensity, specificity, difficulty and complexity of the task. All of those aspects make the participant use problem-solving skills. In other words, we’d be forced to think about our movements. More research is needed to determine how long these benefits of exercise last.
  • Physical Therapy: This can involve several types of exercises: aerobic, strength training, balance and coordination, and flexibility. Meta-analysis (a comprehensive review of many studies) showed that physical therapy can improve balance, strength, gait (speed as well as stride length) and quality of life. The type of exercise varies for each person, depending on a person’s age, previous experience with that type of exercise and access to any necessary equipment.
  • Speech Therapy: Not everyone with PD who has a speech problem is aware of it. The presenter said that speech problems tend to show up around seven years after onset of PD, and swallowing problems occur around 10 years after onset. Studies are being done on the vocal effects of choral singing (singing with a group). Researchers have compared the Lee Silverman Voice Therapy (“Think Loud!”) with speech amplification. Amplification was shown to increase speech intelligibility by 30%.
  • Non-drug, Cognitive & Psychological Therapies: Depression is very common in people with PD, but not everyone can tolerate antidepressants. Cognitive Behavior Therapy (CBT) is one non-drug method that is being considered for people with PD. CBT is a multi-week program in which patients learn to identify thought processes they undergo when upset or anxious, then work with a therapist to come up with ways to address those things."
Learn More:
Find resources for exercise
Read about complementary therapies

WPC Roving Reporters: Day Two Science

The 2nd World Parkinson Congress continues its three days of sessions discussing the latest news in Parkinson’s science and care. PDF’s reporters have been listening in to a variety of these sessions. They are reporting back what they have seen and heard….and sharing the most important messages they are hearing as people living with Parkinson’s.

Please note that this post was updated on October 5.

Kate Kelsall
Attended: Music as Pleasure and How It Can Empower You
Presenter: Concetta (Connie) Tomaino, D.A., MT-BC, LCAT, Executive Director of the Institute for Music and Neurologic Function in the Bronx, New York

"Some of the points in Connie’s presentation included:

  • We all experience music, but we all feel the beat differently.
  • The importance of singing songs one knows well to cue yourself (she sang “You are my ____”; the audience filled in the blank with SUNSHINE).

  • The prosody (rhythm, stress and the intonation) of singing matches that of the voice.

  • Songs can promote memory retrieval of past events that are associated with certain songs.

  • Music and songs can help with psychological issues such as depression or fatigue.

  • Choose music to move by and choose different music to lull yourself to sleep.

  • People with Parkinson’s have difficulty with articulation and lack of breath support. Singing can help with these issues. She illustrated with the song “Amen," noting she was able to help her patients increase their breath support from three syllables to 19 syllables."

Learn More:
Find resources on music and PD
Watch Ms. Tomaino's video presentation from PDF 2009 educational seminar

Jackie Hunt Christensen

Attended: Non-Motor Symptoms: Sleep, Pain, and Autonomic Dysfunction

"This session gave scientific validation to symptoms that many of us with Parkinson’s disease have been experiencing for years, often without acknowledgment from our physicians. Treatments haven’t been identified for most of these problems, but having them recognized as real phenomena that Parkinson’s disease may cause for some patients is a giant step in the right direction toward better patient care.

  • Sleep issues: It is estimated that 90% of people with PD will experience some sort of “sleep disturbance.” These can include reduced sleep; sleep fragmentation (waking up a lot during the night); Rapid Eye Movement (REM) Sleep Behavior Disorder (acting out our dreams, such as kicking, punching, screaming); or excessive daytime sleepiness. Some of these conditions can be worsened by PD medications.

  • Pain: Two-thirds of PD patients report pain that is directly related to their PD symptoms. This pain can occur in arms, legs, back, shoulders and usually occurs on the side of the body most affected by PD. It may improve after PD drugs are begun. Some people with PD may feel pain in a situation or experience that is painless for those without Parkinson’s. Others may feel extreme pain when people without PD feel only mild discomfort.

  • Autonomic dysfunction: The autonomic nervous system regulates “automatic” body functions. For those of us with Parkinson’s disease, autonomic dysfunction can include bladder problems; constipation; sexual dysfunction – in both women and men, excessive sweating, and sensitivity to cold."

Learn More:
Find resources for nonmotor symptoms in PD
Watch PDF's online seminar on nonmotor symptoms

Thursday, September 30, 2010

WPC Science Day Two: Genetics Updates

From James Beck, Ph.D., Director of Research Programs

Here are some additional scientific updates from this week's 2nd World Parkinson Congress (WPC).

Michael Schlossmacher, M.D., reported the results of his recent experiments that demonstrate that mutations in the GBA gene, which were recently identified as a major risk factor for Parkinson's disease (PD), actually contribute to an increase in the levels of alpha-synuclein in nerve cells. Alpha-synuclein is the protein that accumulates in dying nerve cells and is the hallmark of Parkinson’s disease. This result provides a biological explanation as to the significance of these GBA mutations and their relevance to PD. That is to say, Dr. Schlossmacher has shown how mutations in the GBA gene are related to an increased risk of PD. His work has gone through peer review and is currently awaiting publication—we will let you know when it is published and report on his findings in more detail.

Additionally, Haydeh Payami, Ph.D., a research scientist from the Wadsworth Center and Director of the NeuroGenetics Research Consortium in New York State, reported late-breaking results of the re-analysis of a large-scale genetics study her team published this past March in Nature Genetics. The re-analysis examined whether there was a genetic interaction with the onset of Parkinson’s disease and the amount of coffee study participants consumed. Her team found a strong link with a particular gene called GRIN2A, which makes one component of the receptor protein that binds to an important neurotransmitter called glutamate. When this receptor protein binds too much glutamate, it becomes over-activated and can lead to cell death.

What is the role of coffee? Well, the caffeine in coffee indirectly alters how much glutamate is released from neurons by blocking the function of another receptor protein—the adenosine A2A receptor. This in turn, may prevent the cell death observed in the presence of too much glutamate. Indeed, epidemiological evidence suggests that coffee drinkers may have a lower risk of PD. However, Dr. Payami introduced a wrinkle in this concept. She suggests that her teams’s genetic data reveals that only some people may benefit from the strategy of blocking the A2A receptor. You see GRIN2A comes in two forms and only 25 percent of the population have the version which Dr. Payami suggests is beneficial.

Please keep in mind that Dr. Payami's study results were part of a late-breaking science presentation at the WPC, meaning the results were fresh from the lab and will need to be validated and reviewed by her peers. So as compelling as the results are, it will be interesting to see if these findings will stand after a critical examination has been performed. Whether her hypothesis regarding which form of GRIN2A is important is right or wrong, she raised an a critical issue that may be impact future drug discovery—the significance of genetically characterizing research participants. We are all genetically different, so is it so surprising that some people respond better to certain drugs than others? Maybe this is why many drugs fail clinical trials? What do you think?

As the science advances, you can count on PDF to keep you updated.

WPC Roving Reporters: Day One Science

The 2nd World Parkinson Congress includes three days of sessions discussing the latest news in Parkinson’s science and care. PDF’s reporters have been listening in during this first day and a half. We have asked them to let us know what they have seen and heard….and to share the most important messages they are hearing as people living with Parkinson’s.

Here are two reports from Wednesday, September 29:

Steve DeWitte
Session Attended: Early Diagnosis and PD

“This session included four presentations. In the second, Andrew Siderowf, M.D., presented results from trials studying olfaction, or sense of smell. He and other colleagues said that there is now more certainty than before that olfactory failures (loss of sense of smell) may show themselves in people upwards of five years before the clinical symptoms of Parkinson’s are displayed. Over 80 percent of people with Parkinson’s suffer loss of their olfactory sense. This exceeds tremor as a common early onset identifier. With such results, neurologists in the future may be able to look for other markers to validate PD diagnosis earlier, and consider treatment options sooner.”

Jackie Hunt Christensen
Session Attended: Environment, Epidemiology and PD

"In this session, researchers discussed several environmental (meaning things that are in the world around us or that happen to us) factors that are associated with increased risk of developing PD. These include, among others increasing age; being male; head injury + alpha-synuclein gene; pesticide exposure; and non-smokers + LRRK2 gene.

One theory of PD hypothesizes that, in addition to the dopamine system, at least four other parts of the brain are affected. Sense of smell, sleep disorders and constipation MAY be early indicators of PD, but there is not enough evidence to allow any of those conditions to be used as biomarkers (indicators of disease that can be measured before a person dies).

Caffeine intake (coffee, tea or other caffeinated beverages) and smoking may be associated with lower risk of PD.

It's suspected that many things that we have done in our home and work lives could have unwittingly played a role in our Parkinson’s disease. Having certain genes could have increased our risk, too.

This was a very technical presentation, but in my opinion, many patients can learn to understand this information and ask thoughtful questions."

WPC Roving Reporters: Day One Insights

Each day during our coverage of the 2nd World Parkinson Congress (WPC)…we ask our WPC reporters, “What’s the most interesting thing you heard today?” Here are some answers from Wednesday, September 29:

From Kate Kelsall:

"The most interesting thing that I heard/saw today was a presentation by David Iverson entitled: Genetics and Me: Patient Perspective. Background of David Iverson:

David Iverson has been a producer, writer and correspondent for public broadcasting for 30 years. Most recently, he was the writer, correspondent and co-producer/director of the February 2009 PBS Frontline documentary My Father, My Brother and Me, which explored his family’s battle with Parkinson’s disease. Iverson is based in San Francisco, where he also hosts radio and television programs for public broadcasting, including the Friday edition of Forum on KQED public radio.

The three Iverson men all have one thing in common: PD.

He offered an interesting perspective on genetic testing that I hadn't considered. While David Iverson may want to consider genetic testing for himself, his decision impacts his entire family. If he decides to proceed with the testing while his family does not want to know the results, he has to live with the burden of the tests results, good or bad, and not be able to share with his family.

Because of this, he has decided not to proceed.

Inspiring thoughts in presentation:
  • It's all about balance and hope
  • Hope doesn't get you out but it gets you through
  • PD steals your movement and robs you of your voice
  • Life is fragile
  • Each of us has our own version of PD with no operating instructions
  • The power of family and the promise of science
  • Time is our enemy and time is our ally
  • Enduring power of the human spirit
  • Run with what you've got and keeping running toward tomorrow."

From Garry Ballenger:

"On the first day of the WPC, I spoke with a man at breakfast who turned out to be a neurologist from Italy. He works at a clinic in a small town in the northern part of the country. He had spotted me immediately as a person with Parkinson’s and related that he has been running an exercise program for his Parkinson’s patients, working with them three hours a day, every day, for four weeks. He has gotten good results. It fit my own view: vigorous exercise is the best thing you can do to stall the progression of PD. The more you do, the more you can do."

Learn More:

Wednesday, September 29, 2010

Parkinson's Quilt Debuts at WPC!

It was a year in the making...but last night marked the debut of the Parkinson's Quilt!

The quilt, a project of PDF, includes 2x2 foot panels from more than 600 people from around the world. After the WPC Opening Ceremonies yesterday, the Royal Burgh of Renfrew Pipe Band led thousands of attendees into the exhibit hall...

...and for the first time the world saw the Parkinson's Quilt.

We have all been touched by the personal stories told by the quilt panels. As PDF's Executive Director noted,

"Each quilt panel has a story to tell, whether it was created by a person with Parkinson's about his or her experience, or by a care partner, family member or friend, in honor of a loved one living with the disease. These individuals illustrate the truly global nature of the quilt, and of Parkinson's disease. When the quilt is displayed for the first time this week at the World Parkinson Congress, it will radiate the contributions of these individuals and others like them who have been touched by Parkinson's. It will also remind the world that we need increased awareness and funds to find a cure."

Some other quilt highlights:
  • Quilters have been stopping by the PDF informational booth to say hello and we're getting to meet the people behind these beautiful panels.
  • The exhibit includes a "Living Quilt" where people can create panels on site. So if you're in Glasgow, don't miss it!
  • Each day there are several "Meet the Quilter" sessions. Today, our very own WPC reporter/CRLI grad/video competition Pam Quinn chatted about her quilt panels.
  • Exciting announcement: In 2011, the Parkinson's Quilt will be available for rental to the general public. See PDF's website for more info.
  • See the official Parkinson's Quilt press release here, which links to several profiles of our quilters.
Quilt Photos

Why a quilt for Parkinson's? This sign tells visitors how the quilt aims to raise awareness of the impact of PD on people living with it and their loved ones...and on our urgency for a cure.

The Living Quilt is being assembled on site.

The Living Quilt.

WPC attendees admire the quilt.

WPC Posters: CRLI Grads Present

Today kicked off the not only the 2nd World Parkinson Congress (WPC) program - e.g., presentations about the latest Parkinson’s research and care - but also the scientific and lay poster sessions.

Most scientific meetings include posters by scientists, which summarize their most recent experiments. The WPC is unique because, alongside the scientific display, it features “Living with PD” posters. These posters display efforts undertaken by people with Parkinson’s disease, care partners and voluntary organizations around the world to further the cause.

PDF is proud to report that two of its Clinical Research Learning Institute graduates (who also serve as WPC reporters) presented posters about their work in the community. Today, they stood by their posters discussing their work with people from all over the world. They both chatted with us briefly during this time. Here’s a synopsis:

Renee LeVerrier
Yoga Teacher Training for Students with Parkinson’s Disease
(LeVerrier, R.; Rork DeAngelis, T; Thomas, CA (United States))

About Renee's Poster: As Renee says, "Yoga is becoming increasingly popular among all people, and people with Parkinson’s. For me, the focus is on making sure that yoga teachers know how to work with people with Parkinson’s, because it is different." She and her co-authors identified a need in the Parkinson's community for yoga instructors knowledgeable in disease who could tailor their teaching to its special needs. In this vein, Renee created a collaborative model for health care professionals to teach yoga instructors about Parkinson's. She has already conducted two workshops and 40 instructors have been trained.

Diane G. Cook
Addressing the Needs of Newly Diagnosed PD Patients: Development of a Model Curriculum (Cook, DG; Vierck, E (United States))

About Diane's Poster: Diane's poster discusses strategies that she has used to address the needs of people newly diagnosed with PD. She has done this within her own support group, using surveys to monitor what information people are looking for and planning a formal curriculum accordingly. Several of her leading topics include nonmotor symptoms of PD. She hopes to make this curriculum a prototype that others could use. Diane says of her experience today,

“My experience in presenting is that much of the value of the conference takes place in the discussions held in front of our posters and in the booths, where common experiences are shared and cards are exchanged to continue the dialogue. There is a fierce sense of collaboration!”

Congratulations to Renee and Diane. We'll update you tomorrow on other CRLI presenters.

WPC Science Day Zero: Orthostatic Hypotension

From James Beck, Ph.D., Director of Research Programs

Yesterday, an industry-sponsored session for clinicians and scientists was held prior to the official start of 2nd World Parkinson Congress. Largely a review of current medical management of PD, the session included one tidbit that I found particularly interesting - a comment made by Mark Stacy, M.D.

He said that orthostatic hypotension, that is low blood pressure upon standing, is the most common, unrecognized symptom of PD.

Up to 40 percent of people with PD experience orthostatic hypotension. Drugs that are currently approved to treat hypotension, like midodrine, work, but may work too well. The problem for people with Parkinson's is that their blood pressure is generally normal upon lying down or sitting, and problematic only when standing. But midodrine is not “smart” enough to figure this out. So while the drug fixes the problem of low blood pressure when a person is standing up, it also acts when a person is not standing, often causing the problem of hypertension, i.e., high blood pressure.

A solution may be in the works in the form of a drug called droxipoda, approved in Japan and under clinical development in the US by Chelsea Therapeutics (one of the industry sponsors of the session). Much like levodopa, or L-DOPA, a dopamine precursor given to replace dopamine, droxidopa or L-DOPS, is a precursor to the neurotransmitter norepinephrine and is given as its replacement. Preliminary evidence from clinical trials, presented by Phillip Low, M.D. from the Mayo Clinic in Rochester, MN, seems to indicate that droxidopa may benefit orthostatic hypotension in PD without causing hypertension when a person is not standing.

It will be interesting to follow the fate of this drug as it is tested. Do you agree orthostatic hypotension is a problem? Are you waiting for better treatment for it? Let us know in the comment section below.

WPC Opening Ceremonies III

Rhona Johnson, one of PDF's WPC reporters and member of our People with Parkinson's Advisory Council, would like to follow-up on previous posts discussing last night's WPC Opening Ceremonies. Rhona and others communicated that they were particularly moved at the ceremonies by the words of Bryn Williams, founder of

Here's Rhona's report:

"At the Opening Ceremonies last night, Bryn Williams, Founder of spoke eloquently of how PD impacts people living with the disease, their families, friends and carers. He issued an urgent challenge to them all the work for a cure, saying,

'Neurologists cannot do it alone. We cannot do it alone. People with Parkinson's are part of the solution.'

He urged us to work tirelessly and energetically to advocate and educate to find a cure."

What Do You Think?
If you have questions or comments for Rhona about her post, please click "Comment" or "Post a Comment" below.

WPC Day One

The first day of the 2nd World Parkinson Congress has begun. Scientific sessions are already underway and we hope to have some reports for you later today.

Who else is reporting on the WPC? Several other community members, including some of our very own reporters, are blogging all week long as well. We'll post some of these blogs below and start a new WPC Blogroll at right.

Do you know of others?
  • Kate: CRLI graduate Kate has a wonderful story up about how she came to the WPC.
  • Jackie: CRLI graduate Jackie is already blogging about her experience at the exhibits yesterday.
  • Sharon: This PDF quilter is blogging about her trip to Scotland.

Learn More:

What is the CRLI? Visit PDF's site to find out.

WPC Haiku from Renee

As we kick off the first full day of sessions of the 2nd World Parkinson Congress, we'd like to share (a bit belatedly so) a lovely Haiku emailed to us yesterday by Renee LeVerrier, as she waited for the opening ceremonies to begin

Pre-Congress Haiku

Cloudy sky, Glasgow fog
Cannot dampen spirits or
Clarity we seek

Renee is one of our WPC reporters and a graduate of PDF's Clinical Research Learning Institute. Later today, Renee is presenting a poster entitled, "Yoga Teacher Training for Students with Parkinson's Disease."

Learn More:

If you'd like to learn more about Renee and our other WPC reporters:

If you're interested in other creative works by people living with Parkinson's

WPC Opening Ceremonies Part II

Last night's opening ceremonies of the 2nd World Parkinson Congress included not only inspirational words, but also the form of the newly-announced Global Parkinson's Pledge.

With just one click, you can make your voice heard and help to make Parkinson's a priority around the world. The final two lines of the Global Parkinson's Pledge speak to its purpose:

"Furthermore, we celebrate the momentum created by the second World Parkinson Congress and commit ourselves to working together to build a global Parkinson’s movement, designed to elevate Parkinson’s disease as a priority health, social and economic issue around the world."

The Parkinson's community aims to have one million pledge signatures by the next World Parkinson Congress in Montreal in 2013!

Sign the pledge today to ensure Parkinson's is a priority around the world.

Tuesday, September 28, 2010

WPC Opening Ceremonies, Part I

The opening ceremonies of the 2nd World Parkinson Congress (WPC) included some inspiring and informative moments. Here are some quick highlights:

  • Andrew Lees, M.D., Master of Ceremonies, opened the program and introduced the evening's speakers, including Glasgow's Lord Provost who welcomed everyone to the city.

  • BBC News Presenter Jane Hill presented awards to Tony Cox and Pam Quinn, the winners of the WPC video competition. Special congratulations to Pam, a graduate of PDF's Clinical Research Learning Institute. (Watch her video!)

  • Grace Griffith wowed everyone with two songs, accompanied by a guitarist. (See Grace's work on PDF's Creativity and PD site).

  • Stanley Fahn, M.D., Co-Chair of the WPC and PDF's Scientific Director, discussed the history of the WPC, including the instrumental role of PDF and our Executive Director Robin Elliott in putting the first meeting together four years ago.

  • Gavin Hastings, Former Rugby Captain of Scotland and the British Lions, announced that his wife Diane is living with Parkinson's and discussed his commitment to fighting it.

  • PDF's on-site reporters, tell us they were especially moved by comments from Bryn Williams, who founded Wobbly Williams. (Read Bryn's full speech here).

  • The next WPC will take place in 2013 in Montreal.

We have posted a few photos on our Flickr account and can't wait to share more as the sessions get underway tomorrow.

Preparing for WPC Opening Ceremonies

The 2nd World Parkinson Congress opening ceremonies begin in less than an hour. Tonight, the Parkinson's Disease Foundation will join nearly 3,000 other attendees - people with Parkinson's, care partners, spouses, loved ones, researchers, doctors, health care professionals and many Parkinson's nonprofit groups from around the world.

Check out the opening ceremony agenda. We'll report back in a bit on tonight's happenings!

Wednesday, September 22, 2010

Bringing the WPC to You

In just five days, members of the Parkinson’s community will gather for the 2nd World Parkinson Congress in Glasgow, Scotland. Can’t make it to Scotland? PDF will bring the WPC to you.

We’ll be reporting straight from Glasgow, providing scientific updates, interviews with attendees, photos of the Parkinson’s Quilt display and more.

What do you want to know from the meeting? Give us some ideas of the topics you'd like covered.

We'll do our best to report back to you next week, with help from our on-the-ground reporters, members of our People With Parkinson’s Advisory Council and Clinical Research Learning Institute.

Please share your thoughts below.

  • To comment or view comments: Click "Comments" or "Post a Comment" below.

Saturday, August 28, 2010

The Recent Court Decision Halting Federal Funding for Research Involving Human Embryonic Stem Cells

You will all have read about last Monday’s surprise decision by a federal judge to halt federal funding for human embryonic stem cell (hESC) research. The ruling, which was in response to a lawsuit by scientists who were engaged in non-hESC research, was based upon the judge’s interpretation of a Congressional ban on using federal funds for the destruction of embryos that is sharply at odds with more than a decade of legal interpretations under three administrations, Republican as well as Democratic.

Although the decision on hESC research does not extend to other kinds of stem cell research – including the new and powerful technique known as “induced pluripotent stem cells (IPS)” – it does represent a sharp and unexpected setback just a year and a half after President Obama signed an executive order releasing funds for hESC research.

The judge’s action won’t block the road to a cure for Parkinson’s and other diseases, but it closes – at least temporarily – one of the gates to that road. And scientists tell us they need all of those gates open, not just some, if they are to do their life-saving work most effectively.

With PDF's support, the Parkinson's Action Network (PAN) is working on this issue. According to PAN's CEO, Amy Comstock Rick, there is some good news.

First, the Obama Administration has moved with alacrity to challenge the judge’s ruling, which is known as a “temporary injunction.”

Second, stem cell research advocates, led by the Coalition for the Advancement of Stem Cell Research (CAMR), is working with members of Congress to craft a legislative “fix” so that the next judge doesn’t have the same hook on which to hang his anti-hESC research hat that this one did.

And third, we have an advocacy coalition – including you and other people with Parkinson’s and their families – that is stronger than it has ever been and has proved its effectiveness politically on this grassroots issue. As Amy says in a statement she issued to the PD community on Wednesday, “we need each and every one of you to be a part of it!”

Certainly there’s no denying that the court decision is a bad break for the Parkinson’s community. If it is allowed to stand, it will throw a wrench into science, and other wrench into the hopes and prayers of people with Parkinson’s and their families who have a right to be sure that scientists have access to every opportunity to chase the cure to their disease. Be assured that PDF will be doing everything it can, along with our friends at PAN and the other Parkinson’s organizations, to make certain that it does not stand.

We will keep you apprised as events unfold. In the meantime, you may want to visit the PAN website for further information on how you can become involved in advocacy efforts around this issue.

What Do You Think?

So what are your thoughts on this recent court decision halting federal funding for embryonic stem cell research?

Monday, August 16, 2010

Sham Surgery

In clinical trials that test new drugs for Parkinson’s disease, the process is fairly straightforward: some people get the real stuff and others get a sugar or placebo pill. It looks identical to the pill containing the new drug, but doesn’t offer the new compound. Here everyone (the person with Parkinson’s and physician) enters the trial knowing that a certain amount of deception is necessary from the outset….no one knows which pill is which. That is a good thing scientifically.

There is an overwhelming consensus that double-blinded experiments, in which participants are randomly assigned to receive a placebo, result in the strongest and most reliable evidence – which means they give us the best indicator of which experimental treatments would truly help people living with PD and, just as importantly, help shield people from treatments that don’t.

This scenario gets more complicated when the new “drug” is actually a surgical intervention, in the case of PD, brain surgery. What is the surgical equivalent of a sugar pill? It’s called sham surgery and it’s not simple.

So the National Institutes of Health (NIH) held a two day conference, part of which is now available to view online via videocast, to discuss the scientific and ethical considerations underlying sham surgery for neurodegenerative diseases, chiefly Parkinson’s disease.

Why Sham Surgery?

Essentially, a clinical trial is an experiment where the results are unknown. Sure, previous data or testing indicates it is worth spending loads of money on it; but, really, no one knows how the experiment or trial will least that is how it is supposed to work. But because clinical trials are experiments involving humans, the process can quickly be biased by what people think or are expecting to happen: people with Parkinson’s believe they may be getting better and their physicians may too easily agree. Enter the very powerful and very real placebo effect in PD (see here and here for two studies highlighted by panelist Jon Stoessl, M.D.).

So if you have PD and the placebo effect can help you feel better, what is the big deal? Why not spend all this energy making the placebo effect better? The problem is the placebo effect works by convincing the individual something is real when it is in fact not. Before science entered medicine, placebo was mostly the only game in town. So while studying the mechanism underlying the placebo effect is a worthy vein of research, the placebo effect remains no substitute for medical therapy.

A solution has been to control for the placebo effect by keeping everyone in the dark (also called blinding or masking) about who is getting the experimental treatment and who is not. This way, designers of clinical trials try to eliminate the obvious forms of bias, like the placebo effect, as well as not so obvious forms of bias that are harder to predict.

Many PD therapeutics, however, start out as open-label trials where no secrets are kept and everyone knows who is getting the experimental treatment. It may not be surprising, as noted by meeting panelist Steven Piantadosi M.D., Ph.D., that these early trials often end in success —frequently demonstrating a 30 percent improvement in PD symptoms — yet are later thrown upon the bin heap of failure once the more rigorous experiment is conducted. With so many successes followed by failures, what is the price to the person with Parkinson’s?

Looking Ahead
There is no easy answer to this multi-faceted problem. However, several ideas emerged from the discussion at last month’s meeting.
  1. Be more rigorous in the preclinical stage. Without a true model of PD in animals, investigators need to be more thorough in understanding the biology behind a treatment before trying it in humans. (Mice are not people.)
  2. Early trials should be large enough to detect potential adverse events and should include some form of blinding to make them most informative about future directions.
  3. Sham controls should minimize the risk to the participant by using minimally invasive procedures.
  4. If the results of an open-label study are used to decide whether to go forward with more testing the treatment effect should be very large.

These are just a few of the suggestions that emerged to minimize the use of sham surgery while maximizing its scientific potential when employed. As the draft recommendations are refined by the panel participants, they will be available for public comment. We will let you know when that happens, so be certain to check back.

What Do You Think?

So what are your thoughts on how clinical trials are designed and conducted? When would it be appropriate to use sham surgery?

Thursday, July 29, 2010

Tribute to a Founding PPACer

Yesterday, PDF printed a news item about our dear friend, colleague and PPAC member Joanna T. Steichen, M.S.W.

At PDF, we are mourning the loss of this passionate member of the Parkinson’s community. In doing so, we of course find ourselves reminiscing…about her many accomplishments, the many PDF projects in which she had a hand and her friendship.

For those of you who did not know Ms. Steichen, we urge you to take a look at this biography compiled on our website, which is quite inspiring. For those of you lucky enough to call Ms. Steichen a friend, we reserve this space for our memories and tributes from you, about her time with us.

Please share your thoughts below.

  • To comment or view comments: Click "Comments" or "Post a Comment" below.
  • To see Ms. Steichen's biography on the PDF website: Click here.

Tuesday, July 13, 2010

A Tale of Two Research Strategies

From James Beck, Ph.D., Director of Research Programs

I hope you saw the news item PDF posted last week in which we announced $1.2 million in funding from two of PDF’s investigator-initiated grants programs for 13 Parkinson's research projects.

I want to share with you the approaches behind these two programs – both because they are philosophies of which I am particularly proud and more importantly, because we at PDF think these philosophies may also yield “the next great idea” for PD.

First among these approaches is PDF's goal to fund grassroots research, which we do through our International Research Grants Program, or IRGP. Here, PDF puts out a call for proposals that are rooted in the creativity of individual scientists — folks who are experts in their field with first-hand knowledge of the science of PD. The creativity of these scientists is brought to bear to tackle a set of problems on the path to a cure. Each scientist formulates his/her ideas into testable hypotheses and the merits of those ideas are then judged by an independent panel of PD researchers convened by PDF. PDF then extends support - up to the limit of available resources made possible by our donors - to the best ideas in our effort to affect a cure and help those living with the disease.

This approach to finding and funding the best science is certainly not new, though in the business world it is akin to the very popular method of “crowdsourcing” ideas...where new ideas are not generated by an organization, but by a community. In the world of PD, this approach of supporting ideas from individuals has led to the biggest advances in managing PD – levodopa and DBS.

Thus, PDF aims – by leveraging its initial research investment into supporting great ideas generated by the “crowd” of scientists – to help bring about the next big thing in PD.

Another related approach to research employed by PDF is to invest in talented young researchers. As the first not-for-profit organization created to focus on PD, PDF has an established commitment to fighting PD. Because the battle has yet to be won, we absolutely must invest in the future to ensure PD’s defeat. So, through our Fellowship Program, we are working to make certain that the best and brightest young talent joins and continues the fight. In this program, PDF funds young investigators to support them at a critical juncture in their scientific training – whether it be basic science or clinical research.

Since PDF’s grants are awarded exclusively on scientific merit, it is amazing to see how many young investigators were able to generate ideas that successfully competed in this year’s grant competition. Less than half (66) of the 150 total scientists who applied were young scientists fresh from their doctorates…yet, of the eight grants awarded this year, six went to support the Fellows in this category. This is quite an achievement. It provides great promise for the future of Parkinson’s research.

For more information on projects we’re funding, browse this year’s abstracts. We look forward to reporting on the results of this research and the impact we hope it makes upon science and our understanding and treatment of PD. Stay tuned.

Tuesday, June 15, 2010

Every Donation Makes A Difference

From Eddie Pelto, Director of Development

The Parkinson’s Disease Foundation (PDF) Parkinson’s Awareness Month Challenge was an incredible success. Throughout the month of April, we challenged our friends and supporters to help us raise $50,000 online, which would be matched by PDF’s Board of Directors for a total of $100,000 to fund a Parkinson's disease (PD) researcher. PDF beat this goal and raised nearly $70,000 from our supporters. With the match gift from our board, the total raised was nearly $120,000. One of the researchers supported with the proceeds from the challenge is Sonia George, Ph.D., from the University of Minnesota, who is studying The Role of Alpha-Synuclein in Parkinson’s Disease Dementia and Dementia with Lewy Bodies (DLB) in the hope that the results may suggest new therapeutic approaches for both PD and DLB.

Here are some interesting facts about this campaign:
  • 497 people contributed nearly $70,000

  • $138 was the average gift size, but...

  • reality, the achievement was fueled in large part by the many donors who gave gifts of $5, $10 and $20.

This highlights the importance of small donations in funding research. Talk about fundraising often heaps praise and attention on “major donors.” While the support of these generous donors is invaluable, we cannot forget to thank the people who are contributing between $5 and $100, a group that this fiscal year, accounts for 65 percent of PDF’s donors and a total of $1.2 million in revenue!

This is not the only instance in which PDF has observed the importance of smaller donations. Through PDF’s grassroots fundraising program, PDF Champions, we have seen that when grassroots fundraisers successfully raise $5,000 or $10,000 for PDF by hosting their own events – their support almost always comes through multiple modest donations given by their own friends, family and business associates.

It’s clear from the Awareness Month Challenge and these other examples, that every contribution makes a difference and everyone can support Parkinson’s research. If you would like to play a part, one way to do so is by becoming a PDF Champion. Sign up and create a simple fundraising page on our website. You don’t need to run a race or throw a party. Some PDF Champions simply create a page in honor of a loved one, tell their friends they are raising funds to fight Parkinson’s disease and direct them to their personal web page.

To find out about other ways to support PDF, visit

Thank you for your support of PDF during April and throughout the entire year.

Friday, June 4, 2010

Notes from AAN 2010: Part II

From James Beck Ph.D., Director of Research Programs

As promised on Friday, here’s an additional update from last month’s American Academy of Neurology (AAN) annual meeting.

In addition to the study mentioned above, another interesting one - presented by Nasim R. Khadem and Melissa J. Nirenberg, M.D., Ph.D. – investigated the rates of pharmacy errors in Parkinson’s medications.

In this small, prospective study of 73 individuals, the investigators found that about ten percent of people with Parkinson's had the incorrect Parkinson's medication dispensed to them during a one-year period. Dr. Nirenberg alluded to this problem in her recent PD ExpertBriefing (and subsequent newsletter article (see page 4), but this is the first example of data to demonstrate the precise rate of these errors for people living with PD.

Of the other findings this study highlighted, two were noteworthy:

  • 50 percent of the prescriptions were made using computerized physician order entry system

  • Those individuals who noticed the change in their medication and questioned it still received the wrong information from their pharmacy
Since the effects of an incorrect dosage can be very debilitating, this study just emphasizes the need to be ever vigilant when you get your prescriptions refilled.

Have you had problems at the pharmacy? Please let us know about your experiences.

Thursday, May 27, 2010

Notes from AAN 2010: Part I

From James Beck Ph.D., Director of Research Programs

Sorry for the delay in postings. As you will see in the next several posts, I have been a bit busy attending scientific meetings that have a direct impact upon Parkinson's.

The American Academy of Neurology annual meeting was held recently in Toronto. This a large international meeting where neurologists come together to learn and share new scientific progress (largely clinical) related to diseases of the nervous system. I already covered some of the new findings related to imaging and PD in my interview with David Eidelberg, M.D.,, but I wanted to share a couple of other brief things that you might find relevant, the first of which I'll include below. Look for another update next week.

A troubling non-motor feature of PD is psychosis, which is often experienced in the form of hallucinations. Yet, treatments for it have been limited. One drug that is in development for this is pimavanserin. At the AAN meeting, the results of a Phase III trial using this drug were reported by Joseph Friedman, M.D., of Brown University. Though the drug was well-tolerated, the outcome of this safety and efficacy study were negative (a rarity to find negative results reported at all). The trial missed its primary endpoint on reduced psychosis—that is the drug worked no better than the placebo.

What was interesting is that Dr. Friedman suggested that the trial failure may have been due to a greater than expected placebo effect, meaning people taking a sugar pill reported a similar reduction in symptoms as those taking the experimental medication. (Not so unusual for therapies treating motor symptoms in PD, but less common here.) In particular, non-North American study sites (i.e., Eastern Europe and India in particular) reported a much greater placebo effect than North American study sites. It is likely the results from those sites altered the final results while just using data from the North American sites suggested a more positive outcome of the drug.

Apparently, there were differences in how clinicians interacted with their patients and this attests to the difficulty in international clinical trials for some diseases. Nevertheless, Dr. Friedman indicated that the company behind the drug, Acadia Pharmaceuticals, is still pursuing the drug candidate with a revised Phase III study. It will be interesting to see whether the new Phase III trial to be conducted in North America only will end with different, more positive results.

For those interested in Dr. Friedman's work, he recently presented a one-hour PD ExpertBriefing with PDF on a different topic. View this seminar, entitled Fatigue, Sleep Disorders and Parkinson's Disease, on the PDF website.

Also, check back on Monday for news about pharmacy errors in Parkinson's.

Monday, April 19, 2010

Interview with Dr. Eidelberg at AAN

From James Beck Ph.D., Director of Research Programs

At the American Academy of Neurology (AAN) annual meeting in Toronto, I had the opportunity to sit down and chat with David Eidelberg, M.D., this year’s PDF-AAN Movement Disorder Research Awardee. Dr. Eidelberg is a Professor of Neurology at New York University School of Medicine and Director of both the Center of Neurosciences at the Feinstein Institute for Medical Research and of the Movement Disorders and Functional Neuroimaging Center at North Shore Long Island Jewish Health Systems. He has been hailed as an innovative thinker who has developed new ideas to advance our understanding of Parkinson’s disease (PD) and movement disorders in general.

In particular, Dr. Eidelberg (pictured at right) is known for his work with neuroimaging. In a recent study, he and his colleagues used one neuroimaging method – FDG-PET scans—combined with their own computerized image classification program to accurately differentiate people living with classic Parkinson’s from those living with related disorders, or parkinsonisms, such as progressive supranuclear palsy (PSP) and multiple system atrophy (MSA).

How does this work and is it a real option for solving cases of difficult diagnosis? Is the cost prohibitive? As we find out below, the technique may not be ready for maintstream use, but it is helpful in teaching us more about Parkinson’s.

Q1: Your team's recently published study in Lancet Neurology, the culmination of many years of work, used a special form of glucose to measure brain metabolism via a type of imaging called FDG-PET in order to differentiate PD from other related disorders like PSP and MSA. Can you briefly explain how FDG-PET works and discuss your method of classifying classic Parkinson’s versus PSP and MSA?

A: The name “FDG-PET” simply refers to the two parts that comprise the imaging process—a tracer (FDG) and an imager (PET). For the first part, FDG, it is important to understand that the living brain, even at rest, consumes glucose (sugar) as its energy source. In our study, we took advantage of this fact by ‘tagging’ glucose with a harmless, FDA-approved radioactive molecule to see what parts of the brain were more active than others. The resulting compound is called 18F-fluorodeoxyglucose or FDG for short. Part two, PET, simply refers to the specialized imaging apparatus, or positron emission tomography machine, that is used to measure the location of the FDG as it gets utilized in the brain. By studying the images we take, we can then observe how metabolically active are the various regions of person’s brain.

Administering the FDG is very straightforward. The person undergoing imaging is injected with a small amount of FDG through an IV line and then is able to move around freely for about 25 minutes while the compound circulates in his or her body. The PET scan itself is also relatively brief and lasts about 20 minutes. Results are ready within a few minutes of completing the scan.

If the scan shows high FDG uptake in a particular brain region, this reflects tissue with high metabolic activity, whereas low FDG uptake reflects tissue with low metabolic demand, due to loss of synaptic activity (loss of input signals from other brain regions, compromised cell function, or even neuronal death).

We have found that the brains of people living with neurodegenerative diseases, including idiopathic Parkinson’s disease and atypical parkinsonian syndromes such as MSA and PSP, are associated with distinct patterns of altered regional metabolism that are indicators of highly specific pathological change. We can observe the activity of each of these abnormal patterns of brain metabolism in an individual’s FDG PET to measure his or her disease severity. This is important, because in clinical practice, people who actually have MSA and PSP can be misdiagnosed as having PD, particularly early in the clinical course.

While the interpretation of the results of a FDG-PET scan can currently be made by someone who is highly trained to read these studies, the problem is that there are more of these machines available than are physicians trained to interpret the results. Therefore, in our recent study, we developed a fully automated computer algorithm to differentiate accurately between PD, MSA and PSP. In addition, this approach allows for computing the probabilities of each of the three disorders in a given parkinsonian individual based on the expression of the disease patterns in his or her brain.

By comparing the disease probabilities in each case with the imaging criteria for each disease possibility, the person could then be given a tentative pattern-based diagnosis. This automated approach remains experimental and we intend to be able to test and validate it in a larger, multi-center study before it would be widely available for use.

Q2: How do the sensitivity and specificity and predictive rates of your method compare to a clinician’s diagnosis of PD, or even diagnostic approaches for other diseases?

A: In the population of people with Parkinson’s that we studied, the image-based diagnoses are both sensitive and specific – meaning very accurate – when compared to the final clinical diagnoses obtained by movement disorders specialists who followed the same individuals for several years. Our imaging approach was designed as a confirmatory diagnostic test to assist clinicians in specialty practices.

We therefore focused on something called the positive predictive value (PPV), a measure of the accuracy of classification using the early scan versus the later clinical ascertainment by a movement disorder specialist. Indeed, our automated classification approach achieved a PPV of 98% for diagnosing PD, 97% for MSA, and 91% for PSP. More importantly, the diagnostic accuracy of our approach remained excellent (> 90%) even in people in the early stages of parkinsonism with very short symptom durations (i.e., >94%) of the technique. We note that our approach also had reasonable sensitivity (~85%), which is a little lower than seen with dopamine imaging methods like FDOPA PET and ╬▓CIT-SPECT. It is important to appreciate that the latter imaging methods are often used as screening tools to distinguish people with presynaptic nigrostriatal defects from healthy subjects –with very few false negatives. These methods, however, have limited specificity in that they don’t do a good job in separating PD from atypical look-a-like conditions, because both have presynaptic nigrostriatal dopamine abnormalities.

Q3: Given the cost of this imaging to people with Parkinson's (and parkinsonisms) and insurance companies, do you think it will be practical to use such techniques beyond academic medicine, e.g., would imaging techniques such FDG-SPECT or BOLD-MRI offer viable approaches too?

A: Our study demonstrated that our approach is most useful to assist in differential diagnosis of individuals with uncertain parkinsonism. Previous research has shown that such individuals are not infrequently misdiagnosed (~25%), especially at early stages. Indeed, such diagnostic errors can be costly because of the expense and morbidity (complications) of attendant management decisions, as can happen when people with atypical parkinsonian syndromes are referred for invasive procedures such as DBS. By the same token, incorrect early diagnosis can lead to problems in the conduct and interpretation of clinical trials of potential disease modifying agents. So when applied correctly, this technique could help lower the costs of incorrect treatments for some people.

Regarding the costs of FDG-PET, it is important to bear in mind that this FDA-approved imaging modality is now widely available (most Americans live within 70 miles of a clinical PET instrument) and is routinely reimbursed for other neurological indications including epilepsy, brain tumor and dementia. Moreover, the costs (and invasiveness) of this procedure have declined steadily over the past five years and is now in the range of $1500-2000.

Lastly, it is important to realize that pattern-based diagnostic algorithms such as ours do not specifically require FDG-PET. Indeed, we and others have shown recently how this method can be easily applied to other imaging techniques, i.e., perfusion imaging of the brain with SPECT and with functional MRI. While FDG-PET is currently the clinical “gold standard” for resting state metabolic imaging, it is likely that these (and similar) techniques will ultimately be used for pattern-based diagnosis on a broader clinical scale.

Q4) There seems to be a real push, as evidenced in the abstracts presented here at AAN in Toronto, to identify potential anatomic differences (volumetric magnetic resonance imaging (MRI) or diffusion trace imaging (DTI)) in the brains of people living with Parkinson's. Where do you feel that technology stands and what promise do you think it holds for the future?

A: While these new anatomical approaches can be used to identify significant brain abnormalities, it is not clear how “diagnostic” they will prove to be on the individual subject level. Progressive changes in local tissue volume (voxel-based morphometry, VBM) or pathway microstructure (DTI) occur in PD as a reflection of ongoing neurodegeneration. But how large are these regional changes at early stages of disease, and how quickly do they evolve over time? Also, it is important to understand how these structural abnormalities relate to changes in brain function – both regionally and at the circuit level. Indeed, such changes can be extensive and are likely to be present before symptoms actually appear (see our recent paper mentioned above). In the end, complementary approaches employing specialized MRI scans to elucidate brain structure and anatomy, in conjunction with neurochemistry/metabolism imaging to reveal brain function, may provide the most effective strategy to identify robust imaging biomarkers for Parkinson’s.

PDF thanks Dr. Eidelberg for his time. Do you have questions or thoughts on his research? Please post your comments and we'll try to answer them to the best of our ability.

Friday, April 9, 2010

Watch for Next Tuesday's Interview with Dr. Eidelberg

From James Beck, Ph.D., Director of Research Programs

Do you have questions about brain imaging and its potential for diagnosing and measuring Parkinson's? Submit your questions now to PDF and we'll bring them directly to the experts. Next week, I'll be interviewing David Eidelberg, M.D., during the Annual Meeting of the American Association of Neurology (AAN) in Toronto, Canada, a major event that brings together neurologists from all over world.

During the AAN meeting, Dr. Eidelberg will become the tenth recipient of the PDF-endowed Movement Disorders Research Award. He is being recognized for his work in brain imaging and Parkinson's. His team's recently published report in The Lancet Neurology described an automated process to classify the images from a type of brain scan called a fluoro-deoxy-glucose (FDG) positron emission tomography. This method could help separate Parkinson's disease from other related diseases, or parkinsonisms, possibly leading to an ultimate diagnosis years earlier than before.

Submit a question by Monday, April 11 and I'll bring it with me (Dr. Eidelberg isn't available for general PD questions, but you can submit those questions to our Parkinson's Information Service at

The full interview will be posted on this blog by 5 PM ET, Thursday April 15.

Submit a Question

Friday, March 26, 2010

Who Has Parkinson's?

From James Beck Ph.D., Director of Research Programs

When battling a disease of unknown origin, like Parkinson’s disease (PD), knowledge is power. Knowing something even as simple as the number of people living with the disease, or its prevalence, is very important. With Parkinson’s, knowledge of prevalence and incidence can help not only to appropriately advocate for scarce healthcare resources and research dollars but, when tied with other information like location, age, and gender, it can also shed light onto possible causes of the disease itself, e.g., environmental factors.

However, determining the prevalence of PD is not simple. While some other diseases are counted through a national registry, there isn’t yet one for Parkinson’s. (More on that later). Without a registry, the recognized gold standard method for assessing the number of people living with Parkinson’s is the door-to-door survey. This is an arduous process and the most recent survey conducted in the US occurred in 1978 and was published in 1985. It took place in the rural county of Copiah, Mississippi (population 23,842). This frequently cited survey has been used by some to estimate the number of people living with PD in the US - an estimate which stood at 340,000 in 2005 for people over the age of 50. Since this estimate neither includes people under the age of 50, nor those who have not yet been diagnosed, PDF and other organizations estimate a higher prevalence for Parkinson's. For instance, PDF estimates that there are nearly one million people in the US living with Parkinson's.

It makes one wonder…how accurately can data from a small rural county in the South be applied to the rest of the geographically diverse US? Well, a recent study has measured a more diverse group, leveraging the extremely large US Medicare database. This database includes medical information about 98 percent of the population age 65 or older, i.e., greater than 29 million people. This study has found different results:
  • The prevalence of PD for those 65 and older is 1.6 percent (vs. 0.75 percent as reported in the 1985 study), meaning there are actually an estimated 483,000 people living with PD who are 65 and older vs. the 276,000 estimated using the earlier Copiah data for the same age group.

  • The prevalence of Parkinson’s shows a racial distribution with about 1.5 times the level observed in whites than in blacks and Asians, though Hispanics had nearly the same prevalence as whites.

  • There is a geographic distribution, or a ‘PD Belt’ as the authors describe it, of both the numbers living with and diagnosed with Parkinson’s. The highest levels of Parkinson’s are found in the northern Midwest and Northeast.

  • Along these same lines, there is a higher prevalence and incidence of Parkinson's in urban environments vs. rural environments.

  • Interestingly, the Medicare data for Copiah County demonstrated one of the lowest rates of prevalence -- about 1.1 percent -- not too far off the 1985 mark.

Are These Numbers Correct?

The results of this study are not perfect. One issue is that the study relied entirely upon diagnosis codes, which were not validated with spot checks. Diagnoses are recorded on a person’s medical records, and thus can be helpful in assessing who has Parkinson’s. But there is room for error. One study shows that even Parkinson’s experts who see hundreds of people with PD a year are only right in their diagnoses 90 percent of the time, so it is likely community-based physicians who only see 3-4 cases a year may have erred too.

Still, the results from this study provide a newly revised estimate of the number of people living with PD in the US…more inline with the anecdotal evidence that we at PDF hear from people living with PD. The PD Belt that researchers report is also interesting because the areas with the highest incidence and prevalence are also areas with the highest pesticide use and pollution levelsenvironmental factors hypothesized to play a role in PD. With so little understanding as to the cause of idiopathic PD, perhaps this information will guide future epidemiological research.

Although compelling, the PD community is still left with imperfect information about the nature of this disease. One possible solution would be the formation of a national registry for PD. A bill for creating exactly that is before both houses of Congress. I encourage everyone to get involved and help see this bill passed so that we can get the information we need about this disease.

Friday, January 8, 2010

Reflections on PDF's Top Ten List

Over the New Year’s holiday, I found myself reflecting on the Top Ten of 2009 – accomplishments of the Parkinson’s Disease Foundation that we thought worthy of sharing with our supporters and friends. (You can find this list on our website.)

I was happy to see that for almost every item in the “Top Ten,” the people who live with Parkinson’s – along with their loved ones, friends and health professionals – are front and center. Whether it’s a research project, a new educational program or an advocacy initiative, it is this perspective that keeps our work going.

The roles of people with Parkinson’s in PDF’s work are varied. Here are some of them – each one followed by a reference to the item(s) in the Top Ten that illustrates it.

  • Wise Advisors – Item #8 on the “Top Ten” list reflects the crucial role of PDF’s People With Parkinson’s Advisory Council –a group of 13 people who advise PDF on all of its programs and whose discussions led to the development of our now most popular resource, the Parkinson’s Disease Resource List. Item #9 illustrates that it is not just the 13 voices of PPAC, but also those of the wider Parkinson's community, that have influenced PDF's programs. Over the years, many people reported to PDF about the overwhelming medical costs associated with Parkinson’s, so we responded by developing a new financial assistance program, run in collaboration with the Melvin Weinstein Parkinson’s Foundation. This program is just a small step toward addressing this need.

  • Informed Consumers of Medical and Scientific Information – Items #5,#6 and #7 reflect that it is the community’s feedback on PDF’s online educational programs and publications, received via our national HelpLine (800-457-6676), that guide PDF in its decisions to develop new and relevant initiatives for the community. This keeps us “on point.”

  • Crucial Cogs in the Research Wheel – Item #4 reports on the Second Clinical Research Learning Institute, in which people with PD are prepared to play leadership roles in raising awareness of clinical trials. You may see these advocates in your area, as they make their way across the country to raise awareness. As one graduate said, “Nobody is in a better position than a person with Parkinson’s to empower another person with PD and to strengthen his or her belief in the role that clinical research can play in finding treatments and a cure for PD.”

  • Private Philanthropists – Items # 1 and #2 demonstrate that for every research initiative that is funded by PDF – from our regular research and Fellowship programs, to the one-time bridge grants we provided last year to several scientists whose funding was summarily terminated with the collapse of a foundation on which they had depended - every cent comes from private individuals and family foundations. Most of these folks have direct personal connections with the disease. And to all of them, we say a hearty thank you!

Of course, we can’t implement every program that’s suggested to us, but we are doing our best to ‘listen in’ and respond accordingly. We have only been able to do so with the help and feedback of those working with us.

So, here’s to the heroes of our community: the women and men who live with Parkinson’s and the loved ones who are also impacted by this disease. PDF wishes you all a good 2010 – as measured in terms of the progress we all make toward solving Parkinson’s and providing support to those who live with it so courageously. We promise to continue on in 2010 toward our goals and look forward to your feedback and participation as we do so.

Robin Elliott