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!

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.”

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.

We’ve got more of the patient voice taking us into the weekend. Today we have an interview with AlwaysLearning, a 3-star member of our Parkinson’s Disease Community. We caught up with AlwaysLearning at the 2010 Parkinson’s Disease Unity Walk last spring. She shared with us how she learned about her diagnosis and some of the changes she has made in her life to help her manage her Parkinson’s. Although she’s “always learning,” this member also always jumps at the opportunity to share. Enjoy the video and have a great weekend!

With every new member at PatientsLikeMe, there is more data generated for research, more dialogue about individual experiences, and a more expansive support network.  Additionally, with more patients we can become the world’s largest and loudest representative of the patient voice.  To that end, our job in marketing is to share your stories and tell the world about our community to bring in more patients.

Here are highlights of some of the work we did this year to promote your voice and attract the 32,000+ new members we welcomed to the community in 2010.  (Enjoy the video recap below as well.)

Social Outreach

• With a full year under its belt, 2010 was a big year for the PatientsLikeMeInMotion^TM program. With slick new t-shirts and a new sign-up form, the program just about doubled in size from 38 teams in 2009 to 60 teams in 2010.  More than 1,000 people were rocking PatientsLikeMe t-shirts for their disease awareness walks this year and the company donated $14,800+ in our members’ names to almost 50 nonprofit organizations.  (More about our nonprofit partnerships and work we’ve done with them is coming from Molly Cotter next week).  Finally, we launched our PatientsLikeMeinMotion^TM Flickr page, which features hundreds of photos of all of you walking for team PatientsLikeMe.

• In January 2010, PatientsLikeMe launched its first ever podcast called PatientsLikeMeOnCall^TM (hosted by our newest marketing team member, Aaron Fleishman). Through a series of podcasts this year, PatientsLikeMe provided insight from our thought leaders on topics most important to you, spotlighted work with partners and gave patients a place for their real voices to be heard. With more than 1,000 subscribers to date, PatientsLikeMeOnCall^TM is ready to bring more content to all of our listeners in 2011. Thanks for stopping by and listening!

• Along with PatientsLikeMeOnCall^TM, PatientsLikeMe continued to spotlight what you’re saying, learning and sharing through our blog (yes, we do manage the content for this lovely page!), Twitter, Facebook, YouTube and more. Our Twitter followers continue to grow with more than 2,100 followers. Our Facebook page now has more than 1,000 fans and our YouTube videos have a combined number of 74,258 views total, with 35,469 views this year alone.

Media Coverage:

Throughout the year, PatientsLikeMe was featured in a number of media stories (see our press page) that highlighted how you are making a difference for other patients and the healthcare industry as a whole.  In fact, many of you were able to share your stories with the world – from your disease experiences to your participation on PatientsLikeMe.  Thank you to everyone who contributed!  Some highlights include: Fast Company (“2010 Most Innovative Companies”), Fortune/CNN (“Tweet your chart”), Wall Street Journal (“Scrapers’ Dig Deep for Data on Web”), Fox News videos, Women’s Health (“Feel Sick Click Here”), NPR (“What Happens When People Migrate To The Internet”), New York Times (“When Patients Meet Online”), TIME magazine (“Group Therapy”) as well as articles in Bio-IT World, InformationWeek, Nature Biotechnology, PharmaTimes, and SmartMoney.

Events, Direct Mail and Newsletters
In addition to attending some events (e.g., 2010 Transplant Games, Parkinson’s Unity Walk) to talk directly to patients, PatientsLikeMe also reached out to medical centers (e.g., epilepsy and transplants) to inform physicians about how patients are benefiting from being members of PatientsLikeMe (see above).

Finally, we’re thrilled to hear how much you enjoyed the monthly community newsletters in 2010.  Altogether, we published 90 newsletters this year and featured many of your fellow community members in patient interviews (which also appeared here on the blog). Based on your feedback, we also finally launched an archive section on our site so you can catch up on all the latest and greatest from PatientsLikeMe.

Spreading the word is what we do in marketing, and we can say it is has truly been a pleasure telling the world about all that you do and all that you share through PatientsLikeMe.  2011 will only be better.  Thank you and Happy New Year!

“This represents my family, we share everything together.”
- PokieToo, PatientsLikeMe Parkinson’s Community

“The Patient Voice” is here!  Are you ready to listen in?  Today is the official premiere of our new PatientsLikeMeOnCall^TM podcast, “The Patient Voice.”  Our first guest is Parkinson’s community member, PokieToo. Pokie is the founder and creator of the PatientsLikeMe Parkinson’s quilt, a handmade and inspiring piece of patchwork pulled together by members all over the world.  A valuable member of the PatientsLikeMe community, Pokie is recognized in the greater Parkison’s community as a leader and advocate.  She has worked a lot with various nonprofits, including as a consultant for the Parkinson’s Disease Foundation Parkinson’s Quilt Project, and she’s the captain of our members’ Team PatientsLikeMe at the Parkinson’s Disease Unity Walk every year.

As you’ll learn from hearing from other members throughout this series, everyone knows her and loves her.  Pokie is truly an inspiration to everyone she meets. Listen in to learn about how the PatientsLikeMe PD quilt was created, how it’s being used to empower other patients, and why she calls PatientsLikeMe her family.

PatientsLikeMe was a proud sponsor of the 14th Annual Parkinson’s Unity Walk in New York City this past Saturday (April 26, 2008). Jeff Cole, Kate Brigham, Maureen Oakes and I (Lori Scanlon) were all onsite working at our sponsored booth. The event, which raised more than $1.3 million in donations this year, brought together thousands of people with Parkinson’s, their families and friends, support groups, non-profits and sponsoring organizations — all dedicated to advancing research and helping find a cure.

I said this onsite and I’ll say it again: The energy at the event was absolutely intoxicating! In addition to meeting hundreds of people who stopped by our booth to learn more about PatientsLikeMe, we were thrilled to finally meet some of our very own Parkinson’s Community members (and their families) face-to-face for the first time.

“Unity” is the perfect word to describe this event. We got to literally see thousands of people in the same place with the same goal, and it was nothing less than inspiring. We got to meet our members, who not only share their health information and experiences so openly on our site, but also opened their arms to welcome us “in”…it touched us all truly and deeply. We got to “feel the love,” as our members wore badges to represent those members who couldn’t be there. We then came home and read forum posts from the many more members who were at home watching us on the webcast and cheering on the walkers.

Here are a couple of many photos from the Unity Walk. Please take it all in. There was sunshine. There was energy. The smiles. The laughs. The love. The purpose. Can you feel it? Can you feel the (comm)unity? Good. Now, please pass it on…