One of the most promising new online resourcses I’ve seen for the transplant community is the Transplant Cafe, launched by the endlessly energetic and charming Nelson Freytes, who received a liver transplant in 1998. Built on Ning.com, it’s like a self-contained version of Facebook — you can sign up for free and have your own page, you can link to “friends” who are also signed up, and you can leave messages (private or posted for public view) for people. Nelson does a great job of giving everyone personal welcomes and drawing his cafe community’s attention to specific people who especially need thoughts and prayers or special recognition at any given time. This is a welcome example of social networking being used well to connect people who need each other’s friendship and support. Today there are 304 members, many of whom are prospective or past living donors, and it’s growing quickly.
I’ve got a page of my own, and I set up a group called “living organ donors” that anyone can join. You can also chat with other members about the upcoming Transplant Games in Pittsburgh (look out world, my brother’s going to dominate in single’s table tennis!) and join or create groups on several other topics.
Among the people you’ll find there, you’ll see a page for an optimistic and heroic guy named Ryan Egnaczyk, a 24-year-old Philadelphian who donated part of his liver for his young cousin, Michelle, who tragically did not make it for more than a few days past the surgery. You’ll find Tom Simon, a vocal and kind FBI special agent who made headlines when he donated his kidney to a stranger he found via the controversial Matchingdonors.com — you can also find him on the public speaking circuit and at his personal blog, http://www.kidneychronicles.com. You’ll find Becca Ketter, a mom who donated part of her liver to her then 17-month-old baby girl. And that’s less than 1% of the stories you’ll find there.
Hope to see you at the Cafe!