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.

Since 2010, April has been designated as Parkinson’s Awareness Month by the US Senate.  The goal is to shine a spotlight on the national impact of Parkinson’s disease (PD), which affects more than one million Americans.  A progressive disorder of the nervous system, PD is often marked by muscle tremors, muscle rigidity, decreased mobility, stooped posture, slow voluntary movements and a mask-like facial expression.

Parkinson’s activists been coming together for the last 17 years for the Parkinson’s Unity Walk, held annually in New York City’s Central Park at the end of April.  (The 2012 event takes place on Saturday April 28th.)  Now, with Parkinson’s Awareness Month surrounding it, there is a month-long effort to raise awareness and research funds.  One of the driving reasons is that PD complications are the 14th leading cause of death in the US.

PD was one of the flagship conditions at PatientsLikeMe, and today we have more than 6,100 patients who report the disease.  What are they doing to cope?  Some of the most commonly reported treatments include prescription drugs such as Carbidopa-Levodopa (Sinemet), Ropinirole (Requip), and Rasagiline (Azilect); procedures such as Deep Brain Stimulation (DBS) and acupuncture; and supplements such as CoEnzyme Q10.  Click on each treatment to see how our patients rate the effectiveness, side effects, cost and more.

We also have an active Parkinson’s Disease Room in our forum, where more than 7,000 patients are discussing 12,000+ topics.  To date, we’ve logged more than 100,000 forum posts about PD!  What are patients talking about?  Some recent threads include:

• Do you have a caring doctor?
• Dealing with sadness and stress
• Knitting:  therapeutic or tortuous?
• The neglected pain of Parkinson’s
• Resigned from my job today

For more insight into living with PD, stay tuned for our interview later this week with PatientsLikeMe member Jim Atwell, author of Wobbling Home:  A Spiritual Walk with Parkinson’s.

Please meet Parkinson’s disease (PD) patient Judith, who led a PatientsLikeMeInMotion-sponsored team at the Parkinson’s Unity Walk in New York City last April.  Held annually in Central Park, this massive grassroots event donates 100% of funds raised to PD research.

Congrats to Judith and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more PatientsLikeMeInMotion team photos, check out our Flickr gallery.

Thinking about organizing a team for next spring?  Learn more about the PatientsLikeMeInMotion program today.

Every year, PatientsLikeMe sponsors run/walk/bike teams around the country through PatientsLikeMeInMotion.

Led by a three-star member – someone with a complete health profile at PatientsLikeMe – each team receives bright blue PatientsLikeMe t-shirts, business cards and a donation towards their fundraising goal. Some of the events our members participate in include the Parkinson’s Unity Walk, the National Walk for Epilepsy (Epilepsy Foundation), the Walk to Defeat ALS (ALS Association) and Walk MS (National MS Society).

What’s happening this year?  2011 is off to a great start with 30 sponsored teams as of the end of June.  When you compare that to two years ago – when we sponsored around 40 teams for all of 2009 – you can see how the PatientsLikeMeInMotion program has grown.  Wondering whether any of these spring teams were raising awareness for your condition(s)?  Here’s the list of conditions represented for 2011 thus far:

• MS
• ALS
• Parkinson’s
• Cancer
• Epilepsy
• Autism
• Prader-Willi Syndrome
• Mental Health

We’re thrilled to support our members in this way, and we especially love seeing the positive connections that are forged when our members meet “offline” at these uplifting events.  That’s why we’ve asked PatientsLikeMeInMotion team members to submit their favorite photos from recent events.  Check out our Spring 2011 PatientsLikeMeInMotion Flickr Slideshow to see the enthusiasm firsthand:

We’ve also gotten some wonderful messages from team leaders this year that illustrate the impact of the program:

• “Thanks so much for everything, I can’t wait to give the team their shirts and wear them with pride.  You all are awesome.”

• “Thank you for sponsoring me in Walk MS! I am so grateful for your support, which brings me one step closer to achieving my fundraising goal. More importantly, it brings us one step closer toward a world free of multiple sclerosis.”

• “Our team enjoyed the t-shirts and stood out in the crowd in the bright turquoise. We also enjoyed answering questions from those who asked about the t-shirts and the website, about which we gladly shared information!”

Organizing a run/walk/bike team for late summer or fall? Sign your team up for PatientsLikeMeInMotion sponsorship today. (Please allow 3-4 weeks lead time.)

This Spring, as you’re out at disease-related fundraiser events, take note of the people in those bright blue t-shirts walking, running or biking by your side. Those are patients like you!

Since its launch in 2009, more than 1,700 people (including patients, friends and family members) have taken part in the PatientsLikeMeInMotion™ program to raise money and awareness for various conditions. Here are some fun facts about PatientsLikeMeInMotion and a video of some of our members who have participated.

2009 Quick Facts

• 2009 marked the debut of the PatientsLikeMeInMotion program.
• Approximately 40 PatientsLikeMe members signed up teams to participate in PatientsLikeMeInMotion and led more than 700 people on PatientsLikeMe teams across the United States.
• In its first year, the PatientsLikeMeInMotion program donated over $9,000 for charitable disease foundations such as the National MS Society (NMSS), Parkinson’s Alliance and the ALS Association (ALSA).
• The largest member team in 2009 was formed for the annual Parkinson’s Unity Walk in New York. It’s here where we first met and interviewed some of our members (see our YouTube page to meet them).

2010 Quick Facts

• A breakout year for the program, PatientsLikeMeInMotion doubled our number of sponsored teams from 38 in 2009 to 60 in 2010.
• PatientsLikeMe members led teams of more than 1,000 people total wearing the recognizable, bright blue PatientsLikeMeInMotion t-shirts to events across 15 states.
• Together, member-led teams raised more than $15,000 for their charitable disease foundations through PatientsLikeMeInMotion donations.
• PatientsLikeMe teams were present at 20 NMSS events and 12 ALSA events, as well as fundraisers run by The National Alliance on Mental Illness (NAMI), The Epilepsy Foundation of America and the Parkinson’s Unity Walk.
• PatientsLikeMe had the opportunity to sponsor Team Mid New England at the U.S. Transplant Games in Madison, WI (see highlights here.)
• In 2010, we also launched our PatientsLikeMeInMotion Flickr page to host all of the photos our teams have submitted over the years. Check it out.

So, what will 2011 look like for PatientsLikeMeInMotion? That’s entirely up to you! Do you have an awareness event in your area you would like to be a part of? Sign your run/walk/bike team up for PatientsLikeMeInMotion and count on us to support you – both online and off!

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!

In addition to hearing from you through our PatientsLikeMe newsletters, we sometimes get a chance to meet you in person to hear what you have to say about living with your condition.   Here are two videos highlighting interviews we conducted in 2010 with patients just like you.  In the first video, you’ll hear directly from members of our Parkinson’s Community, representing Team PatientsLikeMe at the 2010 Parkinson’s Unity Walk.  The second video is from the U.S. Transplant Games, where we interviewed YellowisJoy, a member of our Transplant Community and National Kidney Foundation’s Team Mid New England. Listen up – here comes the patient voice!

Subscribe to our YouTube page to receive updates about new PatientsLikeMe videos.

Why does it feel like “second nature” for PatientsLikeMe to create innovative partnerships with nonprofits?   Nonprofit organizations are dedicated and centered around putting patients first – a concept that’s near and dear to us too.  In 2010, we focused on refining our nonprofit partnerships to bring more events and programs to patients, both online and off.  As you know from our blog last week, more patients like you sharing data on PatientsLikeMe leads to more learning and we are thankful to our nonprofit partners for helping us spread the word to bring in more patients.  Additionally, the more patients like you who know about and participate in nonprofit events and programs, the more funds raised for your research and awareness of your particular disease.

Below is a video and some details about how we worked with our nonprofit partners in 2010:

• We worked closely this year with the Myelin Repair Foundation on two of their new initiatives: Where are the Cures? and Breakthrough to Cures. We offered you a chance to ask questions and comment on their groundbreaking Patient Manifesto in our hosted forum, and blogged about their innovative brainstorming game designed to spark conversation about accelerating the pace of research.
• With the launch of our Transplants Community, PatientsLikeMe developed a special relationship with the New England chapter of the National Kidney Foundation. Lori Scanlon, Chris Fidyk, and I joined the staff and a team of transplant recipients, donors and their families to spread the word about PatientsLikeMe at the 2010 US Transplant Games in Madison, WI.  We hosted a booth at the Expo and were blown away by the spirit of the Games.  Thank you team PatientsLikeMe!
• There was no shortage of spirit at the Parkinson’s Unity Walk this year at Central Park in New York City.  Lori Scanlon and I met the PatientsLikeMe team walking to raise awareness and funds for The Parkinson’s Alliance.  You can meet some of them through this video created by Aaron Fleishman.  We were amazed by the enthusiasm and determination of the thousands of patients attending the walk with their friends and families.
• Nonprofit partner National MS Society (NMSS) of Greater New England worked hard this year to spread the word about PatientsLikeMeInMotion^TM to its patients – and you responded.  PatientsLikeMe teams increased sevenfold at their events and you helped raise an extra $2500 for NMSS.
• In addition, we talked about the Accelerated Cure Project’s repository for MS and NMO patients and talked about a number of awareness months/days, including most recently Worlds AIDS Day, Epilepsy Awareness Month, and Mental Health Awareness Week.

Stay tuned for exciting new programs in 2011 for you and your favorite nonprofit organizations. Creating exciting partnerships with nonprofits continues to be at the forefront in 2011 and we’re looking forward to launching new initiatives throughout the 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.

Ever wonder what your fellow members were up to on their sponsored walks and runs in various states across the country? Last week, PatientsLikeMe launched a Flickr page for the PatientsLikeMeInMotion^TM program. Now you can see photos of members just like you in motion!   We are excited to share the experience of sponsored teams and three-star members with everyone.

Since its inception in 2009, PatientsLikeMeInMotion^TM has sponsored more than 115 teams across seven disease communities.  With over 2, 100 participants to date, the program has given many members the chance to demonstrate their PatientsLikeMe spirit as well as connect with others who have shared similar experiences.

It’s always great to see how PatientsLikeMe members are just as passionate offline as they are online.  Now, everyone can catch a glimpse our members in action from New York to Ohio to California!  The PatientsLikeMeInMotion^TM Flickr page currently hosts photos from walks in the ALS, MS, Parkinson’s, Transplants, Fibromyalgia and Mood communities…with more to come.  We are proud to feature events such as The National MS Society‘s “Walk MS” series, ALS Association’s “Walk to Defeat ALS” series, Parkinson’s Unity Walk, and events run by the National Alliance on Mental Illness (just to name a few). Have photos you would like to submit? We would love to see them.  Email us.

Thank you to all the members who have contributed their time and photos to PatientsLikeMeInMotion^TM. You continue to inspire others.  And thanks to all the members of the PatientsLikeMe community for continuing to share.

Last weekend, we headed to New York City in great anticipation of the 2010 Parkinson’s Unity Walk held each year in Central Park.  We were excited once again to meet members of Team PatientsLikeMe, a group of patients who travel from across the country to meet one another and work tirelessly to raise money each year for the walk.  Team PatientsLikeMe raised $13,000 and came in as #13 of the Top 25 fundraising teams for the 2010 Unity Walk.

This year, some of the team members were reuniting at the walk after meeting at previous Unity Walks; others were meeting for the very first time.  The experience was inspiring and energizing.  What we were able to see first-hand is how consistently and plentifully patients share – both online and off.  In addition to sharing their health data and lives on PatientsLikeMe, we see how they also share their families, their stories, their dreams of a Parkinson’s-free future, and, at this unforgettable day in Central Park, their unwavering commitment to helping patients just like them.  Representative of the thousands of patients in our communities, members of Team PatientsLikeMe are full of hope and inspiration and plenty of energy.  We chased any person sporting a blue PatientsLikeMeInMotion t-shirt up and down “Find a Cure Boulevard” as they met other patients, registered at information booths, and took in the scene.  It wasn’t always easy to keep up!

We finally pulled the team together (with the help of Team Captain, Pokietoo) as they posed for a team photo for the Unity Walk staff.  As we do each year, we took the opportunity to get some pictures and video of the team sharing their thoughts about living with Parkinson’s and their experiences on PatientsLikeMe.  Here’s a glimpse of a short video with Pokietoo telling us about the power of the patient voice.  Be sure to also check out this video of members of Team PatientsLikeMe sharing their thoughts about living with Parkinson’s disease.

Thanks to Team PatientsLikeMe for opening your hearts, your arms and your lives for us once again this year.  Thanks to our partners at the Unity Walk for creating such an amazing event for patients and research.  And thanks to all of you who share every day in our communities.  You truly inspire us.

The PatientsLikeMeInMotion sponsorship program has been a tremendous success so far this year! Sponsorship requests from members participating in nonprofit events are flying in by the second from all over the country.  It’s exciting to see our members are as active offline as they are online about raising awareness of their condition.  The PatientsLikeMeInMotion program gives members the chance to show their PatientsLikeMe spirit, meet and connect with new people about their condition, and, as we like to say, Tell The World about their experiences.   It also allows PatientsLikeMe to give back to our 3-star members for all the sharing that they do.

Since April is Parkinson’s Disease Awareness month, we wanted to highlight one particular PatientsLikeMeinMotion team from our Parkinson’s community.   This  “Team PatientsLikeMe” has been together for 3 years and will once again join hands (and feet) for the Parkinson’s Unity Walk this Saturday (April 24^th in New York City).  As we continue to get pumped up for this year’s Unity Walk, check out this great video from past events and hear community members “Tell The World” about their experiences with Parkinson’s Disease and PatientsLikeMe.

At PatientsLikeMe, thousands of patients are uniting online to share health data, find patients like them, and to learn from one another.  Since this is Parkinson’s Awareness Month, we wanted to highlight an off-line event that also represents unity – aptly named the Unity Walk.  The annual event, which takes place next weekend in New York City, brings together more than 10,000 Parkinson’s patients and their families to educate the community and celebrate the great strides made in funding Parkinson’s research.

As in the past, our very own group of patients will be walking at the 16^th Annual Unity Walk in Central Park.  Led by pokie too, the 30+ person Team PatientsLikeMe will be gathering in New York to meet one another and to raise money and awareness for Parkinson’s research.  As part of the PatientsLikeMeInMotion program, we are happy to once again sponsor this year’s team.

Want to learn more about the Unity Walk?  Listen in to our latest installment of PatientsLikeMeOnCall podcast series where Aaron Fleishman gets the scoop from Unity Walk Executive Director, Carol Walton.  They discuss walk details, Team PatientsLikeMe, and what the walk has been able to accomplish for Parkinson’s patients.

Can’t get to New York for the Unity Walk?  No sweat.  Tune in to see PatientsLikeMe via webcast starting at 2:30pm on April 24^th.  Let’s keep spreading the word about Parkinson’s and wish good luck to our very own Team PatientsLikeMe.

PatientsLikeMe was once again a proud sponsor of the 15th Annual Parkinson’s Unity Walk, held in New York City on Saturday April 25, 2009. On a gorgeous but hot day in Central Park, Jeana Frost, James Kebinger and I (Maureen Oakes) joined thousands of walkers and sponsors in raising more than $1.2 million for Parkinson’s research. As Lori said last year, “Unity” is the perfect word to describe this event. People from all over the world came together for a common cause and the results were staggering!

Getting to meet PatientsLikeMe members in real life is always a treat, and this year we saw old friends and met some new faces too! For me, one of the highlights was getting to see the amazing quilt made up of squares created by our PD members. Not only is it a stunning piece of craftsmanship, but it represents the spirit of collaboration that is so central to PatientsLikeMe. Members from across the country, many of whom have never met each other, shared their own artistic talents in their individual squares and the final product represents their collective strength, wisdom and passion. It was a great symbol of the power of our PatientsLikeMe community and all their efforts this Parkinson’s Awareness Month.

Great work Team PatientsLikeMe!