Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
It’s one thing to have organ donation represented in the media – that’s always encouraging. It is another thing altogether to have Maggie Gyllenhaal represent organ donation in the media. It makes organ donation so much sexier. Or maybe organ donation is just as relatively unsexy as it’s always been, and it’s Ms. Gyllenhaal that is causing me to say this. Either way, check out PBS doing it right.
Pat Spurgeon is the drummer for a pretty incredible band from San Francisco called Rogue Wave. I learned last year that he needed a transplant. It’s kind of a round-about story. I collect rock posters by another San Francisco artist, Jason Munn. I was shopping his website last year and came across a benefit poster for Spurgeon. I bought it. After the purchase, I wrote a little note to Jason Munn asking him to pass along my best wishes to Spurgeon. While all of my contact has been electronic correspondence, there’s something of a 6-Degrees Kevin Bacon thing. I feel connected to an artist who shares my issues, even though I’ve never met him.
PBS has picked up on Spurgeon’s story and now there’s a documentary about his experience. The website also includes great facts about organ donation – including a quiz that tests your real knowledge of donation. Check out the documentary, take the quiz and, definitely, check out Ms. Gyllenhaal’s PSA.
I got this e-mail from the Renal Support Network today that I thought might be of interest to you. Text is below.
I want to let you know about the upcoming webinar being offered by the Living Donor Kidney Network (LKDN). The webinar, titled Having Your Donor Find You, is being offered on 2 different dates, Tuesday, February 2nd and then again on Monday, February 8th at 8:30pm EST, 7:30pm CST, 6:30pm MST, and 5:30pm PST.
Who should attend? This webinar is perfect for people that are in need of a kidney transplant and want to learn more about living kidney donation and how to communicate their need to friends and family. If there is someone that wants to help them spread the word about their need, their advocates, ask them to sign up for the webinar too.
I would greatly appreciate it if you could pass this information along to the anyone who might be interested. If you have any questions, please do not hesitate to contact me.
To register for one of the Webinars please go to:
For more info see the Website for LKDN: http://www.lkdn.org
weKAN Program Manager
Renal Support Network
Renal Support Network (RSN) offers informative, often entertaining patient directed programs that provide health, happiness and hope: Renal Teen Prom, KidneyTalk, KidneyTimes, KidneySpace, weKAN, HOPEline, PEPP Patient Speakers, Patient Meetings, Live & Give Newsletter, and much more. Visit http://www.RSNhope.org for more information.
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has” Margaret Mead
Not totally free – it depends on circumstances. if you live in a different area than your donee, you might have to pay for travel. but if you have awesome friends and family who donate frequent flier miles and who volunteer their guest rooms it can be offset. after going in for donor evaluations/testing I started to receive a lot of bills from the hospital, but my wonderful donor coordinator cleared everything up immediately. I just had to ask.
the donor process can be confusing, scary and frustrating for the donor. not everything is always explained clearly; the doctors, for the most part, have never donated an organ – they can’t possibly know all the questions a donor might have. there are a lot of questions not about risk but about lifestyle changes or the recovery experience. but there are many donors out there willing to share their stories, to help those considering donation answer questions and feel more comfortable with the process.
the important part is that someone gets a few more years (or a lot more years) to live on this planet with their friends and family, and to accomplish great things (or tiny things), and to have life.
I think its great the people in the media are stepping up and acknowledging the importance of organ donation. I know Steve Jobs has done it recently, and now to have Maggie Gyllenhaal and Pat Spurgeon do it as well is just wonderful. If they have even opened one person’s eyes to organ donation then it’s worth it. Hopefully more public figures will come out and support the cause as well. The more the better!!
The things a mother learns by reading her kid’s blog. I didn’t know you were a fan of Jason Munn’s or had even a tangential relationship with Mr. Spurgeon. I am proud to say I got 8 of 10 right on the quiz. But am most proud of the effort you’re making to keep us all on our organ donation toes. Lovely note from Mr. Tully, as well. Thoughts and prayers for him, too. You are building a strong community on this issue.