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!
As part of our demonstration, we focused a lot on the value of creating a patient profile. Everything you’d want to know about your transplantation journey is charted on the profile to make it easier to visually see what’s going on with you before, during and after your transplant. Many of our patients print out their profile charts and share them with their doctors. Beyond the individual learning, the power of the patient profile is that it is shared with the entire community. The treatment and symptom information you enter gets rolled up into community reports so you can see if what you’re experiencing is similar to the experiences of others, and you can help others do the same.
At the end of the session, we had a lot of great questions. Here are a few:
Can you chart how exercise is helping you minimize symptoms after your transplant? Yes – check out the “exercise treatments” that patients are currently adding to their profile.
Can you only contact other patients publicly through the forum? No. The forum is a great gathering place for many of our patients, but you can also develop relationships one-on-one by sending private messages or leaving comments on other profiles.
Do you have leaflets I can distribute at my dialysis center? Absolutely. If you’re interested in spreading the word in your support groups, you can download some materials on our Tell The World page. If you’d like to receive some more official leaflets to distribute at your Dialysis Center, send us an email with your request at firstname.lastname@example.org.
We are excited to attend this year’s U.S. Transplant Games. This will be our first time at the Games, so we are grateful to have our Team Mid New England pros guiding the way. If you’re coming to the Games, please stop by our booth at the Expo to say hello and pick up some goodies. And, if you see our logo on the back of a Team Mid New Englander, be sure to ask them for a limited edition PatientsLikeMe Pin. See you at the Games!
Since the launch of the PatientsLikeMe Transplants Community in March, more than 1400 patients have come together to share and learn from their transplant journeys. Thanks to our partnership with the National Kidney Foundation serving New England, BionicMan was one of the first transplant recipients to sign up and played a critical role in helping us shape the community before it was launched. Recently, we interviewed BionicMan to learn more about his transplant journey, his experience with PatientsLikeMe, and his participation in the U.S. Transplant Games.
(PatientsLikeMe) You’ve been a member of PatientsLikeMe since we started testing the transplants community months ago. How did you find out about PatientsLikeMe?
(BionicMan) I found out about PatientsLikeMe from National Kidney Foundation serving New England. I think it has benefited me because I like to talk to people and give them the benefit of my experiences.
(PatientsLikeMe) With both a heart and a kidney transplant, how has your life changed over the years?
(BionicMan) As both a heart transplant (1992) and kidney transplant (2007), my life has changed in so many ways. I try to live life to the fullest each day, and appreciate every moment I have with my family. Over the years I have had a few setbacks, like CML and colon cancer and the amputation of my left leg just below the knee, but I have been able to overcome all these things and inspire many people. I wouldn’t change anything, and I will never ever give up.
(PatientsLikeMe) What is one thing you think patients waiting for an organ transplant should know?
(BionicMan) People heading into a transplant should know they are making a lifelong commitment to their health, and they must take care of the Gift of Life they are about to receive. Just like everyone else, not everyday will be great, but it sure beats the alternative.
(PatientsLikeMe) You’ve attended the U.S. Transplant Games before. What was that experience like and would you recommend other patients attend?
(BionicMan)I would definitely recommend going to the U.S. Transplant Games for every transplant recipient. It is like being in a city of transplant recipients. Whether you are real athletic or not, you will enjoy the experience, meet people you will be inspired by and remember your whole life. No matter what is going on in your life, you will see people with more problems than you, yet they have overcome. You will definitely cry at your first Opening Ceremonies, but your life will be changed forever. You will also get to see the real heroes in Organ Donation – Donors and their families.
One of my proudest moments was during the 5K road race at the Games. I was doing the race in a regular transport wheelchair after losing my leg and before getting my prosthetic, and while rolling past a photographer, he said to me – “From Stump to Hero!”
(PatientsLikeMe) Great quote! Thanks for sharing with us and the community, BionicMan.
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 sponsor) with the “Team Mid New England” at the 2010 U.S. Transplant Games to help raise awareness of organ transplantation. Stay tuned for more details to come.
To kick off the partnership, Molly Cotter (who manages nonprofit development at PatientsLikeMe) sat down with Andrea Savisky, President of the National Kidney Foundation serving New England, to ask a few more questions about their organization, their upcoming events and our partnership.
(Andrea) The National Kidney Foundation, Inc. (NKF) is a voluntary health agency dedicated to preventing kidney diseases, improving the health and well-being of individuals and families affected by these diseases, and increasing the availability of all organs for transplantation. 2010 marks the Foundation’s 60th anniversary, and it’s 20th year as organizer of the U.S. Transplant Games.
(Molly) PatientsLikeMe is proud to be official t‑shirt sponsor for “Team Mid New England” at the 2010 U.S. Transplant Games in Madison, Wisconsin. How and why do patients get involved? Can any organ transplant patients get involved?
(Andrea) The National Kidney Foundation U.S. Transplant Games® is a national, Olympic-style competition presented every two years. More than just a sporting event, the Games unite thousands of people from across the country, who have been touched by organ donation and transplantation, and offer social and support programs for recipients, donor families and living donors. As the single largest event promoting organ, eye and tissue donation, the Games serve to foster the health and fitness of its participants, while showcasing the success of transplantation, highlighting the vital need for more organ and tissue donors, and honoring donors and donor families. To receive information on Team Mid New England, email me.Competitive events are open to ALL recipients of life-supporting transplants, as well as to living donors, who are eligible to compete in selected events in their own division.
(Molly) Your 2010 Boston Kidney walk is this upcoming weekend (May 16, 2010). What is that event all about and how has National Kidney Foundation used those funds raised to help patients?
(Andrea) The National Kidney Foundation’s Kidney Walk is a non-competitive walk focusing on education and prevention of kidney and urinary tract diseases, and awareness of the need for organ donation. The Kidney Walk presents an occasion for dialysis patients, organ transplant recipients, donor families, living donors, the medical and business communities, and the general public to celebrate life and create lasting community advocacy and long-term support for the Foundation’s mission.While raising funds for the National Kidney Foundation’s programs and services, the Kidney Walk provides an opportunity for family, friends and colleagues to participate in an inspiring, community-based event. To register for the Boston Walk, create a team or to make an online donation and support the mission of the NKF visit our website.
(Note: If you’re a member of PatientsLikeMe participating in this year’s event, check out how to be sponsored through the PatientsLikeMeInMotionTM program)
(Molly) Some of your U.S. Transplant Games team members were the first to join our Transplants Community (launched in March 2010). Why were you so willing to work with us to spread the word about this new community?
(Andrea) Transplantation can allow people to live healthy and happy lives. While it is true that some important problems are behind clients once they are transplanted, many new challenges will arise. To stay healthy, one has to adapt and pay attention to the various changes to their health, while planning for and responding to them accordingly.Although the NKF’s “People Like Us” movement brings together transplant recipients, living donors, potential donors, people with chronic kidney disease, donor families and caregivers to be empowered, educated and encouraged to be their own best advocate, we felt that PatientsLikeMe aligned with our vision and empowered patients to take an active role in their health and helping others who are traveling along the same path.
Thanks Andrea. We’re looking forward to working with the National Kidney Foundation serving New England to help patients share their experiences with their transplant journeys and have a voice in advancing research.
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.