The Value of Openness: The PatientsLikeMe Blog

Please meet ALS patient iceberg (front right), who led a PatientsLikeMeInMotion-sponsored team at the 2011 Walk to Defeat ALS in Western Pennsylvania.  We count at least 25 bright blue PatientsLikeMeInMotion t-shirts worn by the team (called “Hrezo’s Heroes”), making this one of the biggest groups we’ve sponsored!

Congrats to iceberg and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your health condition. We’re honored to support you along your journey.  For more PatientsLikeMeInMotion team photos, check out our growing Flickr slideshow.

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

Please meet multiple sclerosis (MS) patient hotmama08, who led a PatientsLikeMeInMotion-sponsored team that included two four-legged advocates at Walk MS in Columbia, SC, on May 14, 2011.  We especially love how the team member to the right wore bright blue shoes to match her PatientsLikeMeInMotion t-shirt!

Congrats to hotmama08 and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your health condition. We’re honored to support you every step of the way. For more PatientsLikeMeInMotion team photos, check out our growing Flickr slideshow.

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

Please meet ALS patient sillyangel, who led a PatientsLikeMeInMotion-sponsored team at the Walk to Defeat ALS in Des Moines, Iowa, on October 8, 2011. As you’ll see, she proudly wore her bright blue PatientsLikeMeInMotion t-shirt to stand out in the crowd.

Congrats to sillyangel and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you along your journey.  For more PatientsLikeMeInMotion team photos, check out our new Flickr slideshow.

Organizing a team for this fall – or next spring?  Sign up for PatientsLikeMeInMotion 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.)

As the holiday spirit finally came upon us we thought we should do something nice for our members. There are thousands of them (and many more every day), so it isn’t reasonable to thank every one (we may look like Santa Claus, but we’re not, sadly). So we decided to thank the “stars” of the community - our three star members- and send them a PatientsLikeMe package with a rare PatientsLikeMe T-shirt, and other goodies.

Here are some of our members showing off their new shirts….

This is one of our longer-time MS members, jhcamero, who has recorded 12 years of treatment and symptom information on the site. You have to love the “Christmas Story” lamp and stocking in the background.

This is Kakijade, who was diagnosed fairly recently, and has used the site to track her care since joining in August. Both of these members are frequent contributors to the site. Both are being treated with newer meds, and their sharing of their experience with these drugs is very helpful for other members.

PatientsLikeMe is about patients sharing their experiences and outcomes with each other so they can all better manage their disease and make the best possible decisions. These profile stars reflect how much sharing members are doing with one another. Three-star patients have provided detailed current and historical healthcare information about their condition. Having these complete profiles really helps others understand the history of the progression of the condition, and how it has been treated.

Everyone who had received their PatientsLikeMe package has been delighted, and we’re told they’re wearing them with pride, sharing their excitement for what the site means for them.

We look forward to sending out many more of these “thank you” packages to our three-star members.

As they say, “ho, ho, ho!”

In late June, PatientsLikeMe Head of Business Development David Williams received an email from his high school classmate Bill Ogden. Bill needed help, you see. He and his wife were preparing to take part in the Mid-Michigan Multiple Sclerosis Bike Tour, which covers 150 miles over two days. Bill explained that they were riding in support of one of his old friends John Rafter (pseudonym), who was diagnosed with MS in 2001.

PatientsLikeMe donated $750 towards Bill’s fundraising goal. We salute everyone out there who steps up in support of patients they know and love, not to mention those they’ve never even met.

See the picture of the team with their PatientsLikeMe t-shirts!