13 posts from April, 2012

Six Days Until the Parkinson’s Unity Walk

Posted April 23rd, 2012 by

Parkinson's Unity Walk Is Saturday, April 28, 2012

Parkinson’s Awareness Month isn’t over yet!  This month-long effort is capped off by the Parkinson’s Unity Walk, which takes place Saturday, April 28th, in New York City’s Central Park.

The largest grassroots awareness event for Parkinson’s disease (PD), the Unity Walk is anticipated to attract more than 10,000 participants.  If you’ve never attended something of that size, it’s quite a lot of people.  Beyond the sheer scope of the event, there’s another noteworthy fact:  100% of all donations go towards research supported by the seven major US Parkinson’s foundations.*  In 2011, that came to more than $1.5 million!

The 2009 Unity Walk in Progress

Now in its 18th year, the Unity Walk is an opportunity for solidarity amongst the different PD organizations.  Admirably, these groups have shown there’s no need to compete for funds when you can come together as one.  “This event truly unifies the whole Parkinson’s community behind a common mission—supporting the best, cutting-edge research,” says Joyce Oberdorf, President and CEO of the National Parkinson Foundation.  “It is like no other.”

A PatientsLikeMe Member and Her Family at the 2009 Unity Walk Start Gate

What’s new for 2012?  First, there’s a new 1.4 mile walk route in Central Park – slightly longer than 2011 but shorter than in previous years.  (It is wheelchair accessible.)  There will be free coffee served this year, and there will also be four food trucks on hand.  Another fun feature is the Team Photo Booth.  Get a printed copy of your photo right away and then download a digital copy later from the vendor website.  Learn about other new aspects here.

Over the years, PatientsLikeMe has sponsored a number of Unity Walk teams through our PatientsLikeMeInMotion program, which provides bright blue T-shirts, a monetary donation and more.  We’ve also attended the Unity Walk and interviewed some of the PatientsLikeMe members present.  Check out the short one-minute video below featuring four members of Team PatientsLikeMe at the 2010 Unity Walk.  (Find other Unity Walk interviews on our YouTube channel.)

*All Unity Walk donations are split evenly among these seven US organizations:  American Parkinson Disease Association, The Michael J. Fox Foundation for Parkinson’s Research, National Parkinson Foundation, Parkinson’s Action Network, The Parkinson Alliance, Parkinson’s Disease Foundation and The Parkinson’s Institute and Clinical Center.


A Day in the Life of PatientsLikeMe Research Scientist Timothy Vaughan

Posted April 20th, 2012 by

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris Necochea, Research Assistant Shivani Bhargava and Office Manager Alison Dutton.  Today we hear from Research Scientist Timothy Vaughan, who earned his PhD in physics before deciding to focus his simulation and modeling skills on medical questions.

1.  What research projects are you working on at the moment?

I am working on a few different things. My primary focus recently has been on modeling multiple sclerosis (MS). As just about anyone with the disease can tell you, MS is a highly complex, highly variable illness. To even get a good description of the experience of a patient is a challenge. As one of the “mathy” people at PatientsLikeMe, my job is to try to make the description as systematic and quantitative as possible, because mathematical relationships are often the best tools in trying to solve the underlying puzzle of what the body is doing.

PatientsLikeMe Research Scientist Timothy Vaughan, PhD

So, for example, I have recently been looking at some of the ways that symptoms and the Multiple Sclerosis Rating Scale (MSRS) are interrelated, which may help us understand how functioning and symptoms go together. And, although I am focusing on MS, I am constantly struck by how certain concepts seem to apply across conditions, so I am hopeful that we can learn things that will ultimately help all our patients.

2.  Tell us how computer simulation and modeling help you do your job.

It is fair to say that my job would not even exist without computer simulation and modeling! Partly because clinical trials and other scientific methodologies have become so expensive and time-consuming, scientists in healthcare have to really become creative in trying to learn more about patients and their conditions. Simulations and modeling are becoming essential tools in the era of “big data” that PatientsLikeMe is at the forefront of.

3.  What do you see ahead in terms of PatientsLikeMe’s research potential?

I have to quote the Danish physicist Niels Bohr: “Prediction is very difficult, especially about the future.” I think almost everyone in healthcare right now believes that patient-reported outcomes are going to be of greater and greater influence in the future…but no one is 100% certain how!

In many ways, research is forced to be in a somewhat opportunistic position, because one is never quite sure where the most promising frontiers are, where one is most likely to discover something interesting and useful for patients. But our research potential really stems from our patients. Their willingness to share how they are doing, in so many ways, gives us potential to not just work on what appears to be interesting now, but to quickly respond to new directions that might arise in the future.

4.  What are the three best things about working at PatientsLikeMe?

For me personally, the best thing about PatientsLikeMe is that every morning I wake up knowing that everything I work on is not just scientifically “interesting” (although I like that!), but also really has the potential to help patients’ lives. So, even though the work can be frustrating at times, it is always worthwhile.

The second awesome thing, and it’s almost a cliché to say around is here, is that the people here are so passionate and smart and great to work (and play!) with. Seeing other people working hard and caring deeply about what they do is a great motivation.  The third awesome thing: Alison makes sure there is a constant supply of York Peppermint Patties in the kitchen.