PatientsLikeMeInMotion

Photo of the Day: A Glimpse of PatientsLikeMeInMotion

As we mentioned in our blog post last week, our PatientsLikeMeInMotion program is off to a running start this year with more than 30 sponsored teams thus far. What does one of these run/walk/bike teams look like? Below is Team Sylvan, a 40-person team led by ALS patient Panda155. Decked out in bright blue PatientsLikeMe t-shirts, Team Sylvan took to the streets for the ALSTDI Cure Is Coming Walk, held on May 7, 2011, in Lexington, Massachusetts. This is the third year that they’ve been sponsored by PatientsLikeMeInMotion, which makes them one of our veteran superstar teams. Congrats to Team Sylvan and all of our 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 inspiring PatientsLikeMeInMotion team photos, check out our new Flickr slideshow. Organizing a team for this fall?  Sign up for PatientsLikeMeInMotion today.

Taking It to the Streets: The Spring PatientsLikeMeInMotion Report

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 …

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One for All: The Road Ahead with PatientsLikeMeInMotion™

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 …

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What Does “MS=” for You?

This week marks MS Awareness Week. In celebration of the theme this year (i.e., “MS=”), we are happy to tell the world about what MS equals to us. At PatientsLikeMe, MS= over 22,000 patients sharing their MS journeys with each other and over 90 MS Mentors answering questions about everything from managing symptoms to choosing a doctor. What can you learn about MS at PatientsLikeMe? At PatientsLikeMe, MS patients can report their current and past treatments, including prescription drugs, supplements, over-the-counter medications, lifestyle modifications, procedures and more. They can also report their symptoms and side effects. Here’s a glimpse of what our 22,000+ MS patients have reported: The most widely used prescription drugs are Copaxone, Avonex and Rebif. The top three supplements are Vitamin D, Omega 3 Fish Oil and Multivitamins. Among other types of physical exercise, yoga and stretching are very popular. Symptoms that are most reported include fatigue, pain and stiffness/spasticity. What are our MS members talking about? The current buzz among MS patients concerns an experimental vascular procedure called CCSVI and a new FDA-approved oral medication called Gilenya. Who’s tried them? And have they benefited? Our MSers are hashing it all out in our forums. Another topic is feeling …

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ALS Patient Interview: Never Give Up

We continue our series this week of getting to you the person, not just the “patient.”  Today’s interview is with “iceberg,” a member of our PatientsLikeMe ALS Community and another 2010 newsletter interviewee.   Read on to learn more about what keeps him motivated, how his condition has affected his work life and how he took part in the PatientsLikeMeInMotionTM program.  Enjoy! * * * (Amy) What keeps you motivated? (iceberg) I have always been self-motivated. I have been running since my high school days, running cross country and track in high school. I started to run again in 1978 and even ran a marathon in 1990 when I was 40. I continued to run until 1995 when my foot drop became so severe I began to trip myself. My wife says I am just too bullheaded to give in to ALS. I think watching my grandson grow up is my motivation too. In 1998 when he was born, I didn’t know if I would see his first birthday. He is now 11. (Amy) Who do you admire and why? (iceberg)This is a hard question to answer. I admire anyone who has ALS and continues to battle to live. When …

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Tell The World: A PatientsLikeMe Year in Review (Part V – Marketing)

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 PatientsLikeMeInMotionTM 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 PatientsLikeMeinMotionTM Flickr page, which …

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Flickr-ing PatientsLikeMeInMotionTM

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 PatientsLikeMeInMotionTM 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, PatientsLikeMeInMotionTM 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 PatientsLikeMeInMotionTM 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 …

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All Aboard! Bringing PatientsLikeMe to Transplant “Gamers”

www.flickr.com 2010 Transplant Games photoset As you may know from reading Molly’s post last week, a few of us from the PatientsLikeMe staff recently attended the National Kidney Foundation’s 2010 U.S. Transplant Games in Madison, WI. In addition to supporting some of our current nonprofit and industry partners, PatientsLikeMe was an exhibitor at this year’s event. Our goal was to meet as many “Gamers” as possible to hear more about their journeys and to introduce our community where thousands of others are sharing their experiences. (Check out some of the more memorable moments in our photo gallery of the Games on our PatientsLikeMeInMotionTM Flickr page). If you were a “pin trader” at the Games (a tradition akin to the “trading” that happens at Disney World), you probably walked around with our PatientsLikeMe-branded pin bag hanging from your lanyard or clipped to your belt loop. We gave out thousands of these small blue bags! Or maybe you stopped by the booth to grab a mousepad for a friend, take some leaflets for your clinic or steal a piece of chocolate for an afternoon sugar boost. Regardless of the reason, it was our pleasure to be there and support you in whatever …

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ALS Awareness Month: ALS Patients Are “In Motion”

Did you know there are more than 4,500 patients in the PatientsLikeMe ALS community sharing and learning from each other every day?  Outside of our community, patients are also teaming up to raise awareness and money for ALS research. Here is a highlights video of ALS members who have participated in our PatientsLikeMeInMotionTM program, stepping up to give back to the community.

PatientsLikeMe Teams Up With The National Kidney Foundation Serving New England

We are proud to announce a new partnership between PatientsLikeMe and the National Kidney Foundation serving New England.  In the beginning stages of developing the PatientsLikeMe Transplant Community, we worked together with the National Kidney Foundation serving New England to give interested patients an opportunity to share their transplant journey and help shape this new community.  During this beta phase of the community development, kidney recipients alongside lung, heart and liver transplant recipients,  became incredibly engaged and were excited to share their experiences.  Thanks to all those patients who stepped up from the start, as well as those who have since joined our site!  With more than 1,300 members (to date), the Transplants Community is creating new knowledge about patients’ real-world transplantation journeys.  A special thanks also goes out to the National Kidney Foundation serving New England for partnering with us early on to spread the word. Through this exciting partnership, we will continue to work with the National Kidney Foundation serving New England to find ways for everyone to “give back.”  PatientsLikeMe will be giving back through its PatientsLikeMeInMotionTM program designed to support members participating in offline fundraiser events.  Similarly, we will be joining forces (as an official t-shirt …

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