What Can Alzheimer’s Tell us About Parkinson’s?

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

Understanding how Parkinson’s disease starts and how it progresses remain two of the key unanswered questions about the disease. This is why a recent story in the New York Times caught my eye.

The article described how two independent groups of scientists found evidence that Alzheimer’s disease may spread from brain cell to brain cell much like a virus. These scientists engineered mice to make a human form of a protein called tau in only one small part of the brain. Clumps of the tau protein are a hallmark of Alzheimer’s disease. Like the rubble of demolished buildings, these clumps are all that are left of brains cells that have slowly died because of Alzheimer’s.

Proteins and Clumps

Proteins in the body are folded into special shapes … almost like pieces of origami. Some proteins, if they are not folded correctly to begin with or become “crumpled” due to some cellular problem, will stick together in clumps. Similar to how clumps of the protein tau are a hallmark of Alzheimer’s, clumps of a protein called alpha-synuclein are the hallmark by which Parkinson’s disease is diagnosed. These alpha-synuclein clumps are called Lewy bodies.

Parkinson’s and the Contagion Theory

Parkinson’s researchers have long noted what appears to be the spread of Lewy bodies from one brain region to another. Researchers observed possible clinical evidence that Parkinson’s could “spread” from one cell to another, when fetal cells were transplanted into the brains of people with Parkinson’s disease. The transplants subsequently developed Lewy bodies. That is, something about a Parkinson’s brain made genetically unrelated cells that were only a few years old develop the signs of Parkinson’s disease.

What came out of these observations was the controversial idea that Parkinson’s, once started, might be transmissible from brain cell to brain cell.

Several recent scientific papers are beginning to lend credence to this idea:

• Last year, Dr. Patrik Brundin’s research team in Lund, Sweden published a paper demonstrating that mis-folded alpha-synuclein (the basis of Lewy bodies) can spread from cell to cell in culture and could also spread in the brain of a mouse.
• More recently, Dr. Virginia Lee's team from the University of Pennsylvania published similar findings this past November.
• At a recent New York Academy of Sciences meeting on Parkinson’s disease, unpublished data was presented that also demonstrated how a single injection of alpha-synuclein clumps into a mouse brain could lead to the widespread formation of Lewy bodies in many different parts of the brain.

What Does It Mean?

Well it brings hope that a Parkinson’s therapy might be found in one of two ways: using special antibodies that target alpha-synuclein or a vaccine which primes the immune system to also target alpha-synuclein.

Either approach may not only halt the spread of Parkinson’s disease but maybe could also prevent it.

Your Feedback

What do you think about the recent Alzheimer’s study and how it relates to Parkinson’s? As always, please share your comments and I will do my best to respond.

Bruce and Bob

“It’s incredible how far we have come in 12 years!”

The venue for this quotation was the cavernous Paramount Theater in Asbury Park, New Jersey at 2 AM last Sunday morning, at the conclusion of a six-hour rock concert before a capacity crowd.

The event was the latest production of Light of Day Foundation, the brainchild of Bob Benjamin, a former music publicist and producer. Light of Day’s purpose is to raise money for scientific research on Parkinson’s disease (PD) and other neurological disorders through fundraising concerts – initially on the Jersey Shore, and more recently through tours in Europe and elsewhere.

And the speaker was Bruce Springsteen.

The legendary rock musician’s loyal support of Light of Day since the beginning stems from his long-time friendship with Bob, who has lived with PD bravely for many years.


Bruce is not the only musician to work with Light of Day; he is just the most famous among many. In all, more than a dozen musicians – singers, guitarists, drummers and others – have served on Bob’s board of directors, performed at his concerts, raised money for PDF and his other causes … and even performed with Bob in a just-released documentary film on the organization and its inspiration. One of these – Joe Grushecky, a guitarist – was up on stage throughout Springsteen’s marathon (two-hour!) final set.

They love their work. They adore Bob, their inspiration. And they are passionate about raising money to understand Parkinson’s, and stop the disease in its tracks.

To this writer, in his 16th year running PDF, the experience of working with Light of Day and its gifted, creative leadership is a labor of love, but it is more than this. It is symbolic of four characteristics that drive the success of a cause like Parkinson’s research.

One is the leadership of a celebrity individual – a person like Springsteen or Muhammad Ali – who attracts attention, wins hearts and fills halls.


The second is the existence of a powerful message – supporting science of the highest caliber, to understand a disease and chart the path to its cure.

The third is the presence of an organization like PDF that can parlay money and celebrity into solid work and accomplishment.

And the fourth – perhaps the most important – is the passion and authenticity of one or a few ordinary men or women who just happen to have an intimate connection with the disease and the quiet compulsion to do something about it. On the street or in a train, you might pass by a guy like Bob Benjamin without a second look. On the stage, as he chats with Bruce Springsteen and as you look around you at the evidence of his incredible accomplishments, you would never forget him.

The moral of this is simple: each one of us – like Bob – can make a difference.

A Real Pro: Lenny Zwick’s Pro-Am Raises $55,000

From the sounds of laughter and the jokes among golfers at the Fifth Annual Zwick Pro-Am last Wednesday, it became immediately apparent to any observer that Lenny Zwick had left behind an inspiring legacy. Held at the Farms Country Club in Wallingford, CT, the Pro-Am benefited PDF’s research programs with more than $55,000 and honored the late Mr. Zwick, who lived with Parkinson’s for 25 years.

Photo credit: http://farmsccsuperintendent.blogspot.com

The crowd included more than one hundred of the friends, family and fellow club members who knew him well. Club pro and close family friend, Jim Hanlon served as the master of ceremonies and evoked Mr. Zwick’s spirit to bring the crowd to its feet more than a few times. Mr. Zwick’s family, including daughter Stacey, wife Susan and granddaughter Bianca, were glowing with pride and gratitude during the Pro-Am.

Mrs. Zwick reminded everyone of just the kind of man her husband was, “Lenny was a fighter. Even when the Parkinson’s was really taking hold and he played a bad game he would come home and say 'Ah! It was that [darn] shot.' It was never ‘that [darn] Parkinson’s!'"

Mr. Hanlon acknowledged the dedicated team that helps put this successful Pro-Am together each year, including the Farms Country Club and Dave Melillo, remarking, “The most amazing thing has been that we only had to ask for help once and that was the first year…ever since then every year I get a call asking, ‘What can I do?’”

At PDF, we are grateful for this dedication. We often say that our Champions – grassroots fundraisers like this group of Zwick family members and friends – keep us inspired daily. There was no exception to this rule at the Pro-Am, which has now raised over $250,000 over the course of five years to support PDF’s research programs.

Read about other inspiring PDF Champions on our website. To find out how you can help by organizing your own Champions event, contact us at info@pdf.org.

Thank You, Brilliant Challenge Raises $400,000

The Parkinson's Disease Foundation (PDF) is very excited to announce that it has raised $400,000 through the Irving G. Brilliant Parkinson’s Research Challenge, all of which will be directed towards Parkinson’s research programs.

It was only because of your support - our donors and friends to whom the fight against Parkinson's is a priority - that we were able to surpass our original goal. How did we do it? Here's our story behind the challenge.

March, The Challenge Begins!
As you may remember, on March 30, PDF announced the launch of the challenge, by Mr. Brilliant, a businessman from Brooklyn, New York who lives Parkinson’s. Mr. Brilliant offered to match all gifts made during April, for up to $100,000.

April, The Challenge Doubles
On April 28, we announced with excitement that due to a generous gift by The Light of Day Foundation and Mr. Bob Benjamin, PDF far surpassed the original challenge goal.

Upon hearing about Mr. Benjamin's gift, Mr. Brilliant DOUBLED his challenge, promising to match any gifts for up to $200,000 made by Thursday, June 30.

May and June, More Than 1,000 Supporters
The community responded with enthusiasm to the doubling of the challenge. To date, more than 1,000 people have donated well over $200,000.

Mr. Brilliant is matching the $200,000 with his own generous donation, meaning a total of $400,000 will be directed towards Parkinson's research.

$400,000 for Parkinson’s Research
Thank you all for your generosity. As my colleague Eddie Pelto discussed several months ago, the fact that many donations were of modest size shows the impact of our grassroots community.

Stay tuned to our website next week, when we’ll announce our fiscal year 2012 research grants, so you can see the research your funds will support. As always this research is designed to bring us closer to understanding the cause(s) of and a cure for Parkinson's.

Sincerely,

Robin Elliott

Light of Day Foundation Donates $60,000, Irving G. Brilliant Doubles Challenge

Bob Benjamin, a leader in Parkinson’s fundraising and head of the Light of Day Foundation, contacted PDF this week to let us know that the foundation is donating $60,000 this month – raised from its Light of Day Concerts – to the Irving G. Brilliant Parkinson's Research Challenge.

While this brought PDF well past its initial goal of $100,000 (all of which Mr. Brilliant promised to match), the news got even better.

Upon hearing about Mr. Benjamin's gift, Mr. Brilliant DOUBLED his challenge. If PDF reaches $200,000 by Thursday, June 30, Mr. Brilliant will match every single gift to benefit Parkinson’s research.


Stories of Our Donors, NBC Nightly News Clip

Irving G. Brilliant, J.D.

Mr. Brilliant is a long-time resident of Brooklyn, NY, who was diagnosed with Parkinson's in 2003. A Harvard-trained attorney, Mr. Brilliant spent most of his career on Wall Street. At a young age, he sat on the US legal team at the Nuremberg trials prosecuting leaders of Nazi Germany. With his challenge gift, he is hoping to spur philanthropic interest in scientific research seeking the cause(s) of and a cure for the disease.

The Light of Day Foundation and Bob Benjamin

Mr. Benjamin was diagnosed with Parkinson’s in 1996 at the age of 38, and shortly thereafter, founded Light of Day Foundation, which has held concerts all over the world to raise funds for Parkinson’s. Performers have included Bruce Springsteen. The concerts have raised over $1 million to benefit Parkinson’s organizations. Last year, PDF presented Mr. Benjamin and The Light of Day Foundation with the Page and William Black Humanitarian Award.

Mr. Benjamin was recently profiled on NBC Nightly News for his work in the Parkinson’s community, a clip you can view below. In his interview, Mr. Benjamin states,

“I don’t look at what I can’t do, I look at what I can do.”

Certainly, he has given much to the Parkinson’s community.

We are grateful for not only his support, but for yours in helping us to reach the challenge goal to fund much needed Parkinson’s research. The efforts made this April by Mr. Benjamin, Mr. Brilliant and all of you around the country are truly inspirational.

We encourage you to watch this video below and invite your feedback on the fundraising challenge, the gifts by Mr. Benjamin and Mr. Brilliant and your experiences this April in raising awareness.

Visit msnbc.com for breaking news, world news, and news about the economy

Notes from AAN 2011, Part II: Which Doctors Treat Parkinson's?

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

As mentioned last week, this year the American Academy of Neurology held its annual convention in Honolulu, Hawaii, attracting nearly 7,000 neurologists and neuroscientists.

I wanted to provide you with an update of interesting and new developments that were presented at the meeting last week, in particular, three studies which discussed whom people with living with Parkinson's disease see for their care.

#1-The first was a health economics presented by Marcy Tarrants, Ph.D., of Teva Neuroscience and her colleagues (presentation P01.087).

This group examined the records of newly-filled prescriptions for people diagnosed with Parkinson's and found that, overall:

• the prescribing doctor was a neurologist (both general and movement disorder specialists) in 46 percent of the cases;
• while the prescribing doctor was an internist or primary care physician in another 41 percent of cases.
  

However, when one examines whether those prescriptions are for new treatments (think newly diagnosed or just starting a medication) or for existing treatments (those who have been living with the disease), the numbers shifted:

• only 40 percent of the new treatment prescriptions were from neurologists;
• versus 59 percent of existing treatment prescriptions being made by neurologists.
  

#2- A similar study by Benjamin George, a medical student at the University of Rochester, and his colleagues who worked under the mentorship of Ray Dorsey, M.D., M.BA., now at Johns Hopkins University (presentation P01.088) found in a small study that:

• only 30 percent of those individuals with Parkinson's living in nursing homes see a neurologist;

• the rest see primary care physician or internist 50 percent of the time;

• and 20 percent see no physician at all.

#3-The results of the first two studies tie into the outcomes reported from a related report by Karen Zheng and colleagues working under the mentorship of Melissa Nirenberg, M.D., Ph.D., from the PDF Research Center at Weill Cornell Medical Center. (see photo; presentation P01.081). In a chart review of 120 people with Parkinson's, this group examined the underlying cause of those 25 percent who experienced acute worsening of their Parkinson's motor symptoms, or exacerbations. They found two main causes of exacerbations: infections and medication problems: about 25 percent suffered an infection, often a urinary tract infection, and 35 percent had problems with pharmacy errors or taking their medications on time (evenly split). While many of the exacerbations were reversible, about a third had recurrent problems and about a fifth never improved.



The lesson here is that prompt medical attention by someone trained to recognize the complications of Parkinson's by, you guessed it, a movement disorder specialist is important to achieving the best outcomes to these exacerbations.

Conclusions
These numbers in the first two studies, and the conclusions of the third, reiterate a concern that PDF has for PD community: not enough people are seeing the medical specialists who can best treat their disease.

PDF recommends everyone with PD see a movement disorder specialist or, if one is not in your area, a neurologist who can perhaps work with a specialist that you travel to see once or twice a year.

Do you need a recommendation? Call PDF to find the specialist nearest to you.

Please share your thoughts on these studies and check for further reports!

Notes from AAN 2011 Part I: PDF News

This week the researchers and clinicians who treat Parkinson’s and a host of other neurological diseases are gathering at the annual meeting of the American Academy of Neurology in Hawaii. Here they will share new information on the science and care of Parkinson’s. PDF’s Director of Research Programs, James Beck, Ph.D., is on the ground in Hawaii and has been sending us some updates on some of the happenings at this meeting.

Here are some PDF-related highlights he has sent along:



First, AAN accepted a submission from PDF as part of its competitive poster session, which Dr. Beck has shown in the photo above. The poster talks about PDF’s PAIR program, a network of 100 research advocates who have undergone a three-day training program to become knowledgeable in the clinical research process. PDF is particularly proud to have submitted this poster, which highlights the contributions of people with Parkinson’s to the development of new therapies. Clinical research advancement – and the inclusion of people with Parkinson’s within it – has long been a PDF priority that you can read about in our Winter newsletter. To access the full poster, download it here.



Second, seven neurology fellows (pictured above) - a few of whom are supported by PDF’s sponsored clinical fellowship program in Movement Disorders at Columbia University - are in attendance in Honolulu to keep up-to-date with Parkinson’s science. These fellows are training for careers in Parkinson’s disease and other movement disorders. Stay tuned as we receive more news from the AAN meeting.