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.

James Parkinson's Legacy

Next Monday, April 11, we will be observing the 256th anniversary of the birth of James Parkinson, the English scientist whose masterpiece of medical observation – An Essay on the Shaking Palsy, published in 1817 – defined the condition that we know today as Parkinson’s disease.

What do we know about this man? Why was he so important?

Well, first off, free yourself of any image you may have of James Parkinson as a medical scientist who spent his whole career studying movement disorders. He was actually one of those Renaissance men and women who roamed England and Western Europe during the period we call the Enlightenment, and who seemed to have inexhaustible appetites for knowledge of many kinds. He was a surgeon, an apothecary, a geologist, a paleontologist and a political activist in the Radical movement. In fact, about the only thing he wasn’t was a physician!

A couple of weeks ago, I had the pleasure of attending a talk on the subject of Mr. Parkinson given by Gerald Stern, M.D., a well-known Parkinson’s scientist from London. Remarkably, Dr. Stern told us, his subject died virtually unknown in 1824, and wasn’t rediscovered until some more than six decades later, when Jean Martin Charcot, the brilliant French physician who is considered the founder of modern neurology, renamed the disease (then known as Paralysis Agitans) for the man who had first written about it. And Parkinson’s disease it has been ever since.

Indeed, if Mr. Parkinson was known for anything during his lifetime, it wasn’t so much for his medical observations but for his interesting early work on the emerging sciences of archeology, paleontology and minerology – he published several articles in these fields – and for his political tracts on such subjects as extending the franchise in England, which got him into trouble with some of the conservative authorities of the time (shaken as they were by their problems with the American colonies and later by the Reign of Terror that followed the revolution in France). He was subversive, certainly, but was opposed to violence; one of his more important writings, in 1794, was entitled “Revolutions without Bloodshed, or Reformation Preferable to Revolt.”

As to medicine, Dr. Stern told us, his interests – true to form – ranged widely, from:

• the effects of being struck by lightning;
• to medical education (and the importance of being on the alert for quacks);
• to the study of epilepsy, for which he devised a treatment involving blood and salt.

He showed a deep compassion for people, and some of his thinking was quite advanced for the period – for example, his view of hypochondria (which he said should “not be summarily dismissed” in all cases), and his insistence that one should always “respect the poor.” Perhaps most startling for the study of Parkinson’s, he thought that the palsy might be traced not just to the movement-controlling sections of the brain but to other parts of the brain as well – in some sense, foreshadowing today’s conception of PD as much more than just a movement disorder.

He was also a religious man, and sometimes his devoutness conflicted with his instincts as a scientist. For example, as he was growing up, most people were convinced that the Earth had been formed precisely in 4004 BC, the product of the labors of James Usher, a respected Irish bishop. Seeking to reconcile his own skepticism about Usher’s theory with his religious beliefs in an article he published in 1822, Parkinson came up with a very clever question, which Dr. Stern quoted for us: “May not the days of creation be considered periods of infinite duration?”

Although Parkinson was never widely known in his lifetime for his work on the shaking palsy, it is nice to know that he understood something of the importance of his own work. In his usual modest style, he wrote that he was happy that his writing may have “excited the attention of those who want to ease a tedious and troublesome malady.”

What better theme – in April, the month of James Parkinson’s birth, that we now call Parkinson’s Awareness Month – is there to inspire the doctors and scientists who work to understand PD, find its cure and treat those who live with it? As Parkinson put it, let us “ease” that malady indeed – and work like devils to find the knowledge we need to “end” it, just as just as soon as we can.