By Jim Myers, AAKP Board Member, Ambassador
Posted: February 5, 2019
I have often been asked why I take such long walks. I was in my transplant doctor’s office a few months back. He gave me that look. You know the look. Like that look your Dad used too give you before the stern lecture was coming. The serious discussion lecture. He told me I was not getting enough exercise, and I should try to get out more. He suggested walking. I’ve never been an athlete. I have avoided exercise in the past. I’ve always been an academic. I hated gym class. But I knew he was right. I spend a lot of time on my computer or phone. I’m known for my dedication (some have called it an addiction) to social media. As the proud recipient of AAKP’s inaugural National Social Media Education & Advocacy Award and as developer of 60 Kidney Pages and 50 Kidney Group pages, as well as nine electronic newspapers and 10+ blog sites, I knew my time online wasn’t going to slow down – but I also knew I had to get out and move more. But in my mind, it had to mean something more than just exercise for me to commit to long-term.
At the same time, I belonged to a group (and still do), Get Loud for Kidneys. Our leader, Ashley Somics, suggested we do something with movement, wearing our t-shirts to indicate that this movement was kidney related. I accepted that challenge. Also, about that same time, I lost a dear friend, a great kidney advocate, fellow AAKP Ambassador and a man waiting on the list for a kidney transplant, Bill Murray.
In my opinion, Bill was the greatest kidney advocate in America. He frequently travelled to kidney events, or schools to speak. He was constantly advocating for kidney patients. He had a heart attack, but that did not stop him. His advocacy took him to walks for children with kidney disease and eventually to the White House with the leadership of AAKP – an invitee to the Rose Garden as President Trump spoke on the issue of prescription medication costs with HHS Secretary Alex Azar.
Bill and I would talk a couple of times a week and these were great discussions. He was once at a kidney summit on Capitol Hill where he went from walking to a scooter, but that did not stop him from making his Congressional visits. Injuring his thumb and rolling that scooter over did not stop him. He was determined to make a difference. He called me after his last heart attack. Typical Bill, he wanted to start “scheming” about a number of kidney issues, and how we’d get others involved. He told me he’d have to take it easy for a while, but he’d be back out there very soon. Two days later he was gone.
I wanted to remember him on my walks. I wanted to set an example for others and I wanted my walks to be meaningful to the kidney community at-large. Bill had been on the waiting list for five years. I have dozens of other friends on that list. I’ve been lucky. I was transplanted after a four year wait. Bill was not so lucky. I have other friends and family members I have lost while waiting. I wanted to encourage other people to act. I wanted to encourage them to share on social media and to advocate for the transplants of those in need. I wanted my walks to help those who are seeking a kidney. I could combine all my activities into those walks. I could help myself and others by dedicating those walks to those seeking a kidney, waiting on that list – like AAKP member Melissa Tuff from Mel Needs a Kidney on Facebook – she is an example of someone who is still waiting and someone I dedicate my walks to.
(Data at left from https://optn.transplant.hrsa.gov/data/)
I feel that only a 20% conversion rate for people that wish to receive a kidney transplant is too low. We need more donors for kidney failure patients. I hope my personal walks, in some small way, help motivate people to donate life to many of our needy kidney friends and family. If you see posts on social media requesting a kidney transplant, please share and retweet. If you are healthy and desire to help, please call your nearest transplant center and offer to test for someone in need. If you have a friend or neighbor, work buddy, church member or other acquaintance in need of a kidney, please consider sharing your spare. Kidney disease affects 40 million Americans, so there is a very good chance you do/will know someone. You can do as well with one as you can with two. Please give serious consideration to donating a kidney. I’ll keep walking until there is no waiting list.
AAKP Celebrates 50th Anniversary with Walk for Kidney Disease Awareness!
AAKP will host its inaugural kidney disease awareness walk in December 2019. The walk will raise awareness of kidney disease among communities and Americans across the U.S. and raise funds to support AAKP’s patient educational programs and advocacy efforts. There are three easy ways to participate! So build a team, get involved and help AAKP raise the true, independent voice of kidney patients!
- In-person: Join us in Tampa, FL to participate in the live event (date to be announced).
- Across America: Build a team of friends and family members and get out and walk in your local community. Take team pictures, selfies and send to AAKP the day of the event! AAKP will be LIVE on social media during walk hours posting pictures of our friends across the U.S. that are participating remotely!
- Virtually: Unable to join us live or walk in your local community – no worries! You can still build a “virtual” team and help increase awareness of kidney disease and share all the pictures from the event and across the U.S.!
AAKP’s Walk registration and fundraising opportunities will open in the spring – continue to visit www.aakp.org/50thanniversary for additional details.