Posted by Lori Piscatelli Scanlon | August 30, 2010
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 PatientsLikeMeInMotionTMFlickr 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 PatientsLikeMeInMotionTM. You continue to inspire others. And thanks to all the members of the PatientsLikeMe community for continuing to share.
Posted by Lori Piscatelli Scanlon | August 18, 2010
Attending the National Kidney Foundation’s 2010 U.S. Transplant Games was an eye-opening experience. And it wasn’t just the thousands of transplant recipients, living donors, and donor families who made the event so memorable. It was the passionate commitment to transplantation by so many different individuals and organizations.
Dozens of nonprofits, donor and support groups, and pharmaceutical manufacturers descended upon Madison, WI to meet those touched by transplantation and celebrate their stories. An incredible number and variety of resources were offered by these organizations to drive donor awareness, support the needs of transplant recipients, and facilitate connections with others (see the photo of Novartis’ “Wall of Inspiration”). The simple act of pin trading between two people often caused them to open up about their transplantation experience and what brought them to the Games.
As the founding sponsor of the Games two decades ago, Novartis continued to serve as the event’s lead sponsor and pledged its continued support in the future. Other noteworthy pharmaceutical sponsors of the Games included Pfizer, Bristol-Myers Squibb, Astellas, and Genentech. Together with Novartis, these organizations have invested many years and many millions of dollars developing the immunosuppressants that transplant recipients need to maintain the health of their organs.
Novartis also demonstrated its commitment to organ recipients last year by partnering with PatientsLikeMe to develop the Transplants Community. Novartis wants to learn from this Community – just as patients learn from one another – what challenges patients face and what unmet needs can be addressed. By partnering with patient-centric organizations like Novartis, PatientsLikeMe fulfills its mission of improving patients’ lives by discovering important research insights through shared patient data.
PatientsLikeMe is headquartered just outside Boston, which is coincidentally the city where the first successful kidney transplantation occurred more than 50 years ago. We are proud to extend Boston’s long-standing commitment to organ candidates and recipients.
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 way we could. Below is a video we showed at the booth to help people learn more about our transplants community. (Thanks to our colleagues Aaron and Adam for pulling it together!)
In the middle of day two at the booth, one gentleman stopped by and said to me – “I had my transplant years ago. I don’t really need social support at this point, so, tell me, why would I join a community like this?” And he waited patiently for the answer.
What I love about working for our company is that we don’t pretend to be something we’re not. If PatientsLikeMe is not for you, then it’s not for you. If our site were just a forum or simply a social network, then maybe he’d find little value in joining, and I told him that. But, he listened as I explained why we’re not just a forum. Some recipients still have questions about what they’re experiencing on a daily basis (e.g., “is it normal to still feel fatigue a few years after my transplant?”) and want to find information from patients’ real-world experiences. Other members create profiles to chart their ownhealth over time and share that with their doctors; they may even choose not to interact with other patients. Still, we see many members – just like this gentleman – who had an organ transplant years before and are on our site to share their health journey so that others can learn from it. It’s this generosity in “giving back” that struck us from the first day we opened the doors to our online Transplant Community, and it’s what made the Transplant Games such an overwhelmingly inspirational experience. In the end, it was this generosity that made him say – “Well, good answer. I can jump on that wagon.” All aboard.
Thank you to everyone for doing what you do – online and off – to help raise awareness of organ transplantation and help others learn from your experiences.
We had the opportunity to sponsor Team Mid New England at the Games. Their blue shirts were easy to spot in the crowds of more than 7,000 people. They wore our logo on their backs and traded our pins to spread the word about PatientsLikeMe. On Saturday, we were able to gather them all for this fantastic team photo. (See all of our photos from the weekend here).
Their energy and excitement was contagious. Check out this video of Team Mid New England marching into the Coliseum during Opening Ceremonies.
At the Transplant Games, transplant recipients, living donors, and donor families all come together to celebrate life and honor their loved ones. They say they come for sport, but really they come to share their stories, to meet one another, and to be a part of something greater than themselves. It’s not dissimilar at PatientsLikeMe where transplant patients can find patients like them, share their story, learn from one another, and contribute to research.
Listen to YellowIsJoy, a current transplant community member talk about her experiences at the Games and on PatientsLikeMe. You can feel her energy and her appreciation after receiving 3 life saving kidney transplants. She is making the most of her life and stresses the importance of choosing new adventures every day.
The athletes, donor families, and friends that comprise Team Mid New England were gracious, energetic, and wonderful cheerleaders for PatientsLikeMe. Congratulations to the team for bringing home more than 20 medals! Let’s make it 40 in 2012!
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.