Friday, June 21, 2013

Going 3D: The BigBrain Is A Gift That Keeps on Giving

This blog is part one in a series of three about the BigBrain.

Do you remember the moment of putting on 3D glasses in a movie theater? There was awe and excitement as stories and images that were flat came to life. There was similar excitement yesterday when researchers reported in Science that they have created BigBrain, a high resolution 3D digital image of the brain.

To understand the excitement, it’s important to understand that like a 3D movie, this image isn’t simply a flat picture of the brain. It is incredibly in-depth. Have you ever had an MRI? Well this is hundreds of thousands times more detailed.  Some have compared BigBrain to Google Earth, which shows much of the globe, piece by piece. Scientists think this up-close-and-personal view will help us understand how the brain works.

But perhaps the most amazing part of the BigBrain story, is the one of how it came to be. BigBrain was reconstructed from a real donated brain, from a 65-year old woman who had passed away. She gave her brain to science, and now we may all benefit for years to come.

For it’s true that the brain truly is the final frontier. Did you know that even with BigBrain, brain donation remains an urgent need for understanding PD?

We can study other organs while a person is alive, but we cannot easily access and view a brain. The only way to study to do so to date has been to study brains donated to science. Brain donations enable scientists to learn more, for example by comparing a person’s medical records and PD symptoms, to their brain tissue after death.

That said, brain donation often brings up many questions and concerns for people with PD and their families. A few years ago, PDF Research Advocate Diana Barnwell wrote a beautiful story, "My Last Gift", about her decision to donate her brain to research, which may provide food for thought.

What’s your view of brain donation, and of this gift that made BigBrain possible?

At PDF, we always say that we can’t do our part without you. And in looking at BigBrain as an example, it’s true. In fact, this brain is only the first to be mapped. Scientists report planning to map other donor brains, including a male brain and others whose donors lived with certain diseases or conditions.

This emphasizes that it's your participation in research – including via brain donation – that brings us closer to solving Parkinson’s. So we say thank you to the anonymous donor that made BigBrain possible, and thank you to you.

Learn about brain donation by reading Diana's story, "My Last Gift," here, or by browsing PDF's list of US brain banks here.

Wednesday, June 19, 2013

Of Patents and Parkinson's

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

Should or could a human gene be patented? On June 13th, the Supreme Court of the United States delivered their unanimous ruling regarding what has been called the Myraid Genetics case.  The plaintiffs in this case sought to invalidate Myriad’s patent on two genes that when mutated can lead to a significant increased risk of breast and ovarian cancers.  Because of the patent for these two genes, Myriad, a clinical diagnostic testing company, was the only entity that was permitted to perform the clinical tests that can both inform women if they carried mutations in these genes and if they are at an elevated cancer risk.

In their ruling, the Supreme Court concluded that naturally occurring genes, like the ones in the patent held by Myraid, are a product of nature and therefore are not eligible for patent protection.

The emphasis of the Court is on naturally occurring genes and that is important because the Court made clear that almost any modification to that naturally occurring gene would be eligible for patent protection—provided it met all the regular standards of a patent.  The example the Court provided was for the ‘cDNA’ sequence of a gene.

When a Gene is Not Natural
So what is cDNA anyway?

It may helpful to think of the genes found in most animals as magazine stories. These stories are constantly interrupted by advertisements, forcing them to span dozens of pages instead of just a few.  These interruptions to the gene story are called introns and, just a like a real magazine story, they get skipped by the body as it reads the gene when making a protein in a process called transcription.  In the laboratory, this “ad-free” or more precisely “intron-free” version of the gene can be converted back to DNA (the cDNA) for later use in a biotech setting.  Because this edited version of the gene did not appear in nature, it is eligible for patent protection.

What Does This Mean?
In general, this decision will not really affect much in the normal operation of science and business.  Whenever a gene is patented, the ad-free cDNA version is almost always included as part of that patent.  Importantly, it is this cDNA version that is really of the utmost value to a company because the naturally occurring sequence is often so large and unwieldy it is not practical to use—this is because the cDNA form can easily be just one-fifth the size of the naturally occurring gene. That is a lots of ads that were cut!

For companies that have a product that relies almost exclusively on the naturally occurring sequence, say for a diagnostic test, this ruling will be more disruptive.  In fact, several competitors have just announced that they will offer the same cancer gene test for less than what Myriad charged.

Ok, so what does this mean for Parkinson’s disease?
Again, not much really.  There are several companies that have been trying to develop gene therapies for treating Parkinson’s.  While the patents these companies may hold on the naturally occurring gene sequence is likely not enforceable anymore, the shortened version of the gene still has a valid patent and that is what counts—it is this shortened form that is actually used in the experimental therapy.

While the Court’s ruling that naturally occurring genes are not patentable is certainly historic, I think the initial effects are relatively limited, especially for Parkinson’s.  Time will tell how this ruling will be applied to other areas of intellectual property law.

Tuesday, June 18, 2013

Expression vs. Insensitivity: A Message to Kanye West from a Person with Parkinson’s

From Tom Palizzi
Chair, PDF People with Parkinson's Advisory Council

Kanye West is without question a richly talented and multifaceted artist. With utmost respect for freedom of expression and the inherent controversial nature of art in general, there is, however, a fine line between expression and insensitivity.

"On Sight," the opening track on Mr. West's new album Yeezus, includes the lyrics:

“The monster about to come alive again/
 Soon as I pull up and park the Benz/ 
 We get this b*** shaking like Parkinson’s”

Many of us appreciate the lighter side of having a chronic and degenerative movement disorder, though as many interpret such statements as harsh and insensitive. While it appears Mr. West is familiar with one of the more recognizable symptoms of Parkinson's disease, there are several other, less obvious challenges people with Parkinson's face.

For more than 55 years, the Parkinson's Disease Foundation (PDF) has been helping people understand and cope with Parkinson's disease. In a unique and bold move, the foundation formed the People with Parkinson's Advisory Council (PPAC) to ensure the effectiveness of their actions.

As Chair and on behalf of PPAC, I would be delighted to help Mr. West better understand the truths and myths of "Parkinson's" and how it indiscriminately impacts the lives of roughly 1,000,000 Americans and their families. Notable people such as Michael J. Fox, Muhammad Ali and Ben Petrick, my peers and millions of others are testament to the enduring spirit of people with Parkinson's.

Mr. West, please take a moment and visit to learn more and, by all means, feel free to contact me or my colleagues with any questions.


Tom Palizzi
Chair, People with Parkinson's Advisory Council