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.

Notes from a Day Spent Listening to Scientists Judging PDF Research Applications

Last Friday, March 16, was the occasion for reviewing applications for PDF’s International Research Grants program and Research Fellowships programs. Before us were some 30 proposals from some of the best young (and not-so-young) scientific investigators in the world.

As I sat there in the meeting as an observer, listening to the members of our scientific review committee as they made their comments and pronounced their judgments, I found myself scribbling notes on what seemed to be the principles on which they were basing their decisions. What they were saying, it seemed to me, said a lot about how we go about choosing the projects we will fund. Here are some of the ideas I picked up:

Relevance to Parkinson’s Disease. Every proposal that we fund – without exception -- must show promise in its potential to advance our understanding of PD, or charting the path to its cure.

New Ideas, New Investigators. To maximize the leverage of the program, successful applications will be one of two kinds. One is the innovative pilot project that shows promise for leading to a larger-scale endeavor that will be eligible for funding from the NIH (drawing on PDF’s “leverage” function). The other is the Parkinson’s-related application from an exemplary scientist whose past contributions have been largely in areas other than Parkinson’s – and who could be inspired by means of the PDF grant to turn his or her attention to PD.

Demonstrating Results. The renewal of an earlier award to the same scientist depends on the investigator’s ability to show “significant progress” since the first grant – that is, you don’t get a second grant if you can’t show that you used the first grant well.

Establishing Credibility. To make it through the grant review process, good ideas aren’t enough; the applicant needs to be able to demonstrate – both in his/her personal accomplishments and in the reputation of the lab in which the work will be done – a stellar track record in producing innovative and useful science.

Including Advocates in the Research Process. The meeting included three members of Parkinson’s Advocates in Research (PAIR), a PDF program in which lay leaders in the PD community are prepared to take on a variety of roles advocating for clinical research. An example of their contribution came early in the day, when one of these advocates raised a question about the validity of animal models in Parkinson’s research, which generated a spirited exchange among the scientist members of the committee.

I hope you are as impressed as I am with this little vignette of PDF’s research culture!

I conclude with a quotation from a memo on the mission of the program from Dr. James Beck, who is our Director of Research Programs at PDF and staffs the grants review committee. In thanking the scientists in the room, he said, in effect: “The two groups that will benefit most from your decisions today are not even here. One is the world of talented young scientists whose work will be made possible through your efforts. The other is the community of almost one million in the U.S. who live with Parkinson’s. In behalf of these two communities, PDF thanks you!”

Amen, James.

Grant Review at PDF

Today is a big day for many at PDF — it is our annual grant review. Of course, those most affected by what goes on in the big conference room will not be there. There are two groups who depend on tomorrow's outcome: the scientists who have given us their best ideas for our scientific advisors to judge and the people who live every day with Parkinson's and are counting on these great ideas to make a difference in their disease and their lives. I am confident that the team of scientists helping — members of our scientific advisory board and other experts from around the country — will select only the best science today.

All in all, nearly 25 reviewers have pitched in their time to help whittle down the 200 letters of intent to 63 full grant proposals to, now, only the top 20 or so grants. Because of time, it is these top 20 applications that will actually get discussed.

And for the second time, PDF is doing what no other PD organization in America is doing—making certain those people living with PD have a literal seat at the table and participate in the decision making process. These people, PDF's Research Advocates, part of the Parkinson's Advocates in Research program, insure what we will fund is not just the best for science's sake but for the sake of people too. Something in which we, as an organization, take great pride and you as a community should too.

Tomorrow would be difficult to organize without the obvious help of my colleagues at PDF. But equally important is the help from everyone who will not be joining me in the room — you, the Parkinson’s Community. Your generous support of allows us to do what we do every day: support research and ideas that will improve the lives and futures of people touched by Parkinson’s. Our research program would simply not be without you. Thank you.

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.

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.

Sincerely,
Robin Elliott