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.
5 posts from May, 2010
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.
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|(Molly) What is the mission/goal of the National Kidney Foundation?
|(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.|