Category Archives: Innovative methods for increasing organ donation
By Bob Aronson
With Johnny Racine
The chorus from the Mariah Carey song Hero is a fitting way to start this blog..
“And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive
So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you”
“And then a hero comes along….Johnny Racine would never describe himself that way, he would never even think of it but being as this is my blog I can say it.
The 39 year old former mechanic, musician and computer whiz kid from Ottawa, Ontario, Canada has made a commitment that puts him on a collision course with the hero designation. His “Steering Towards Hope” tour will span the width of Canada in the summer of 2014 to inform and inspire the nation to become organ donors and support kidney research during the Kidney Foundation of Canada’s 50th anniversary year.
Johnny will be leading the tour with his own 800 horsepower Mustang which he built with the aid of his twin sons 16 year old Tyler and Ryan. Dubbed “The Kidney Hope Car” the 2007 Mustang is a labor of love hope and commitment to kidney patients everywhere.
As Racine and his crew cross the nation they will hold “Poker Runs” and “Show and Shines” in several cities along the way (schedule to be announced) to draw attention to the need for organ donors. These are real “Oooh and Ahhh” events that allow owners to show off their great work and attendees have an opportunity to get up close and personal with some of the most amazing and exciting cars on the planet and their ingenious owners.
Show and Shines involve owners bringing their cars into town for display purposes only but there will be awards for those that show best. Registration is only $10 and It’s a lot of fun for owners to show off their hard work. Attendees will have fun looking, taking pictures and talking with the owners.
Organization of the Poker Runs and the Show and Shine events is up to individual communities but Racine’s team will be available for advice and other help.
Here’s how a “Poker Run” works. First you have to know this is not a race. It is a poker game on some very hot wheels and an opportunity for the most creative custom hot rodders to get together to show off their cars and maybe win a prize while doing it.
Each contestant pays an entry fee of $35 and those fees will go to the Kidney fund. There will also be prizes for the top three Poker hands. The prizes and Poker Run expenses are funded by sponsors (more on sponsorship opportunities at the end of this blog). Drivers are encouraged to bring a navigator for the contest.
Upon registration each driver will be given a number along with a map to direct them towards their first check point. Again this is not a race so there is no set time to complete the game. The driver and co-pilot can enjoy the drive and the spectacular Canadian scenery.
At the starting line, groups of 6 to 8 cars will leave about ten minutes apart. Upon arriving at their check points they will each blindly pick a card from a pillowcase full of cards. An official at the check point then logs the card they chose and puts it back in the pillow case at which point the driver is given a map that will lead them to the next stop. When they have made all the stops and selected all their cards they return to the starting point where judges will look at each poker hand. Those with the best hands win the prizes.
“What happens in a tie?” You ask. Well, if that happens contestants can choose between a real game of poker or picking new cards from a new pillow case.
As the Steering Toward Hope tour moves west to east across the country, every unique moment will be shared via Twitter, Facebook and YouTube.
Leading the tour will be Johnny’s own custom vehicle, “The Kidney Hope Car.”
Yes, it’s a Mustang and no, it’s not your father’s Mustang or anyone else’ for that matter because this baby is powered by 800 horses, that’s right 800 horsepower that’s about four times the power of the average car but it didn’t come that way from the Ford Motor Company. Johnny and his 16 year old twin sons Tyler and Ryan are responsible for taming that many horses and packing them under the hood of this 2007 mustang. And…believe, me, all 800 of them are raring to go. As you can see by the trophies, It has already won three best of show awards.
Johnny is well known in automotive and motorcycle circles and he’s using his car and his reputation to save lives by increasing the number of organ donors in Canada (I have a hunch there’s going to be a huge ripple effect that will send waves splashing across the border and inspire U.S. citizens to do the same. I wouldn’t’ be at all surprised to see a U.S. tour).
Racine is doing this because he watched his favorite uncle James MacMillan die a slow and terrible death as the result of kidney disease. “Uncle Jim” suffered for a long time and even got a transplant several years ago but the illness returned and he was again placed on the Canadian transplant list. This time, though, there was no donor organ match. Canada like most every other country doesn’t have enough organ donors to meet the demand and Johnny sadly watched Jim’s failing health until in February of 2012 MacMillan died.
His uncle’s death left Johnny Racine saddened, devastated and frustrated. Jim MacMillan a brilliant mechanic himself, was Johnny’s mentor who not only taught the young Racine what he knew but worked side by side with him on a number of car “remodeling” projects.
Johnny saw Jim’s death as a challenge to do something to prevent others from suffering the same fate, so he turned to what he and Uncle Jim knew best – cars – hot cars – souped-up rubber burning, fire breathing, chrome plated, mechanical miracles.
Now that incredible automobile is going to be on display for everyone to experience and it is guaranteed to excite all of your senses. Upon first sight this spectacular car and its custom vertical doors will almost take your breath away — but you will be near sensory overload when Johnny fires up that big custom engine because you will not only hear it you will feel the rumble of 800 restless horses when that big V8 power plant roars to life. And…finally there’s that special aroma that only a car like this has and it stays with you –forever (if you want to know more about the car see the footnote to this blog).
Working closely with the Kidney Foundation of Canada, Racine is dismayed by the fact that people don’t seem to know just how serious kidney disease is. With indignation and passion he points out the following:
- 1 in 10 Canadians have kidney disease
- Canada was once a leader in organ donation and that now it has fallen to 23rd
- 4,500 Canadians are waiting for an organ transplant, 80% are waiting for a kidney
- Of the 80% waiting for kidneys 40% will never get one…they will die waiting just like Johnny’s uncle Jim
Johnny asks that everyone consider this question, “Why take your organs to the grave when the gravely ill so desperately need them?”
The Steering Towards Hope team includes Johnny, the twins and Stephanie but also several people who have had kidney transplants like Cody McLelland who got a Kidney from his dad three years ago.
Cody and others will meet and greet people on the tour and tell their stories in an effort to increase organ donation and to raise money for the Kidney Foundation of Canada. They will also visit the dialysis units in those areas to speak with patients, get more stories, do interviews and publish them on their website and YouTube http://www.youtube.com/user/STHCanada?feature=watch So you’ll get a double hit of excitement. You’ll not only see great cars and meet their owners you’ll also meet and chat with medical miracles who are alive because of the goodness of others.
While dates have not yet been set for the tour the plan is nearing completion and has the team starting on the West Coast of Canada and moving eastward to the final destination of Ottawa. Here’s where the team plans to go.
Steering Towards Hope Proposed Stops
Day 1 Mission BC
Day 2 Victoria & Nanaimo BC
Day 3 Vancouver BC
Day 4 Calgary AB
Day 5 Medicine Hat AB
Day 6 Saskatoon & Moose Jaw, SK
Day 7 Brandon MB Day 8 Winnipeg MB Day 9 Kenora ON
Day 10 Thunder Bay Day 11 Toronto ON Day 12 Val D’Or & Quebec City
Day 13 Labrador City
Day 14 Travel day
Day 15 Charlottetown PEI
Day 16 Halifax & Fredericton
Day 17 Montreal QC
Day 18 Ottawa
The Steering Towards Hope tour can and must happen and you can help. Once again, if you’d like to be a sponsor click here. http://tinyurl.com/lv2amzs
You know about the car, you know about the tour and you know why Johnny Racine is doing this. What you don’t know is who Johnny is. Well, Johnny Racine is kind of a Mr. Everybody. He’s like the rest of us who work and make payments. He is a computer expert who works for the Canadian Government and is in the office by 6 every morning. His family of five includes himself, fiancé Stephanie Bailey his 16 year old twin sons Tyler and Ryan and her son 11 year old Jackson.
Johnny works on the car and the Steering Towards Hope tour after hours and on weekends. He’s still making monthly payments on the Mustang, has to pay the light and water bills, buy food and meet all the same family obligations as the rest of us plus — and this is a big plus — financing the car over the last two years of the Local Ottawa Steering Towards Hope event and he loves every minute of it.
Johnny Racine is just a regular guy with a big heart and a mission. His desire to help kidney and other patients is sincere and he has a laser like focus on his planned 2014 tour across Canada to honor his Uncle Jim by increasing the number of organ donors.
Canada offers a multitude of ways in which you can become an organ donor and this site will help you do that http://tinyurl.com/c3awxwn but, no matter what you do…tell your family what your decision is. All too often families say, “No” to organ donation because they are unaware of the wishes of their loved ones. Decide to become a donor, register in any of the ways offered on the link provided and then TELL YOUR FAMILY!
You Can Help
Finally, at the very beginning of this post I noted that John Racine would never think of himself as a hero I know that because we’ve talked several times. He is an unassuming, compassionate man with a mission. But that mission is expensive and to this point he has paid all the costs out of his own pocket. He’s not the kind to emphasize the financial burden he has taken on and doesn’t like asking for help. In preparing this post we communicated by several means a number of times every day. His enthusiasm for the project is exceeded only by the ideas he generates on how to make it better. I only found out about the financial strain by pressing him for information. It’s not something he volunteered or even wanted to discuss but I know he needs some help and I also know he’ll get it. Here’s the part of the story Johnny rarely discusses.
In each town he visits with the Kidney Hope Car to oversee the Poker Run and the Show and Shine he helps raise funds for kidney research and organ donation. Money raised locally stays there. Johnny neither gets any of it nor does he want it. He personally pays all the expense of taking the car to events, keeping it running, insured, fueled and safe and now new Federal emissions standards are causing him to make significant mechanical changes that are expensive. Once the national tour begins the expenses will mount quickly and significantly. Unless he gets some assistance Racine will have to pay that expense, too, plus he will be taking all of his vacation time to do it.
Johnny Racine is making an impact but he can’t continue to do it alone. He’s not looking for donations for himself, he has a job and can pay his own way. What he needs is sponsors — companies, corporations, individuals or groups who will absorb the cost of tires, necessary upgrades (like the new emission standards) oil changes, tune ups, insurance and other items. If you are interested in sponsorship here are your options and the benefits associated with being part of Steering Towards Hope. It is a very worthwhile project and will result in saving a good many lives and some of them may be people you know and love. Is there a higher calling or a more noble action you could take?
Click here if you’d like to become a sponsor or want more information. http://tinyurl.com/lv2amzs
***The Kidney Hope Car specs for car buffs
It took Racine and his twin sons three years to build this 2007 Mustang GT into a high performance street and show car. The Mustang features a built twin turbo 4.6 three-valve engine good for nearly 800 hp at the rear tires. They also added an Exedy dual friction clutch, ROUSH Performance body kit, and Menzari 20-inch wheels. They lowered the car with Eibach springs, added Koni adjustable shocks, and a Steeda anti-hop kit as well. They kept the stock 3.55 gears in the differential allowing the car to cruise easily on the highway. It averages 500 km with 65 liters of 94 octane fuel on the 94 octane performance tune, that’s a little over 18 MPG (for those of us not on the metric system),. The father and sons also upgraded the exterior of the car with a ROUSH body kit and a set of vertical opening doors.
Bob Aronson is a heart transplant recipient. He got his new heart on August 21,2007 at the Mayo Clinic in Jacksonville, Florida where he now lives with wife Robin and their two dogs Reilly, a soft coated Wheaten, and Ziggy a Mini Schnauzer.
For some 25 years before his transplant Bob was an international communications consultant and owner of the Aronson Partnership which became the Aronson Communications Group after the surgery. Today he is semi retired and also assists his artist wife Robin with her Jinglers Jewelry art show business.
Prior to starting his consulting firm in the 1980s he served as the Communications Director for a Minnesota Governor; was the first Anchor of Morning Edition on the Minnesota Public Radio Network; worked as a journalist at several Midwest broadcast facilities and from 1965 to 1974 was one of the first radio talk show hosts in the country.
Aronson founded Bob’s Newheart and Facebook’s Organ Transplant Initiative (OTI) on November 3, 2007. OTI is a 3,000 member transplant patient, recipient, caregiver and donor/donor family support and education group.
Readers are welcome to Join OTI with the only requirement being that you support our mission which can be found in the “About” section of OTI. We seek to grow our membership because by so doing will have more influence with decision makers as we pursue those issues which would most benefit our members.
Please view our music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs. This video is free to anyone who wants to use it and no permission is needed.
Thank you for reading our Bob’s Newheart blogs and please leave a comment or contact Bob directly at firstname.lastname@example.org. We intend to continue to expand the number of issues we cover and the availability of information to the public. You’ll find scores of other posts on Bob’s Newheart, just check the index for topics, click and read.
If you are an organ donor we thank you. If not you can become one by going to www.donatelife.net it only takes a few minutes. Then, tell your family what you have done so there is no confusion later.
Reprinted from The New York Times
| May 17, 2012, 12:35 pm
Last summer I went to my local Department of Motor Vehicles to renew my driver’s license. When it was my turn after a half-hour wait, a woman behind the counter summoned me, muttered a greeting and began shuffling through my papers.
After a few minutes she broke the silence and asked, “Do you want to be an organ donor?”
As a surgeon specializing in liver transplants, I’ve spent more time than most people thinking about that question. But on that particular afternoon, after a long wait on hard benches in a spartan room with a dozen others gazing glassy-eyed into space, a question about death and the dispersal of body parts felt as if it had come from out of the blue. Or from the script of a bad existential play.
It took me a minute to collect my thoughts and agree, but the experience reminded me why there are not enough organs available for transplant in the United States and why only half of all Americans consent on their driver’s licenses to organ donation. It’s hard to think about dying anywhere. It’s particularly difficult in the middle of the D.M.V.
Unfortunately, there are significant repercussions to those decisions. More than 100,000 patients are currently on the transplant waiting list, and about 7,000 of them die each year because of the organ shortage. Even more dire is the situation of African-American patients, who have a higher incidence of diseases that can result in kidney failure. These patients make up almost a third of the waiting list but account for only about 15 percent of those who donate after death. Even though organ allocation does not take race or ethnicity into account, the chances of a “good match” are increased within groups with genetic similarities.
An interesting study published last month in Annals of Internal Medicine offers some hope of increasing the number of people who consent to donation on their driver’s license, one of the easiest and most popular ways to register donors. Unlike previous initiatives that have tried appealing language like the “gift of life,” offering educational programs at workplaces or churches, promoting a YouTube video reminiscent of a popular soft drink jingle and, most recently, tapping into the power of Facebook, this approach takes advantage of the obvious – the wait at the D.M.V.
For six months, a group of researchers stood outside branches of the Bureau of Motor Vehicles in northeastern Ohio and stopped anyone arriving to apply for or renew a driver’s license. They then asked half of these people to watch a five-minute iPod video on organ donation before entering the office, and they asked everyone to show their new driver’s licenses when they left the building.
In the video, family members, donors, transplant recipients and people whose friends and relatives died while on the waiting list discuss their experiences. They also answer common questions about the personal impact of donation, religious views and the level of care a patient might receive once it is known that person is a potential donor. Most significant, the video also encourages viewers to begin thinking about donation, so most people who watch the video as they enter the D.M.V. will contemplate the decision while they are waiting to get their licenses.
The video resulted in an increase of more than 10 percent in consent for donation. And the increase was even greater among African-Americans; nearly 25 percent more consented to organ donation after watching the short film.
“Video is very powerful, particularly among minority communities where health care literacy is an issue,” said Dr. J. Daryl Thornton, the lead author and an assistant professor of pulmonary and critical care medicine at the MetroHealth Campus of Case Western Reserve University School of Medicine in Cleveland. “If you give people time to think and contemplate right before you ask them, you can have an impact on their decisions.”
Those who watched the video felt better informed, had fewer conflicts about the idea of donating and were less likely to want to be buried with all their organs. But there were limitations. Regardless of whether they watched the video, some people continued to believe, for example, that carrying a donor card would mean they would receive less emergency medical care in case of an auto accident.
“There are probably some deep-seated beliefs about organ donation and the health care system that a five-minute video is unlikely to change,” Dr. Thornton said.
It is still unclear whether the increased number of consents that resulted from the video will mean more available organs in the future, but Dr. Thornton and his colleagues are heartened by their findings and are continuing their research. The video is already playing as a public service announcement in some D.M.V.’s throughout the Washington State, and there are plans to try to link it to state motor vehicle Web sites for those who are renewing a license online.
“Even though the majority of people support organ donation, it’s hard for them to envision becoming the donor themselves,” Dr. Thornton said. “We’re trying to create a bridge that makes it easier for those people to cross over.”
Bob Aronson of bobsnewheart is a 2007 heart transplant recipient, the founder of Facebook’s 1800 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.
You may comment in the space provided or email your thoughts to me at email@example.com. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to firstname.lastname@example.org and usually you will get a copy the same day.
Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.
LifeSource is an Organ Procurement Organization (OPO) in St. Paul, Minnesota. I know the people there quite well and was so impressed by their latest posting in “The Source” I decided to reprint it so others could benefit from it as well. I am often asked, “What can I do to promote organ donation besides becoming a donor myself?” Well, there are many answers but this blog offers a couple of excellent examples.
by Jeff Richert
We have many exceptional, creative and energetic volunteers. I want to focus on just two of them and what they are doing to celebrate National Donate Life Month in April.
Judy is a long time LifeSource volunteer from Fergus Falls, MN. She lost her daughter, Jenny, in May of 1993. Judy’s activities for April included a radio interview about donation and drunk driving that she has done for many years. She also coordinates a unique program with her beautician.
In addition to providing space for a display and information table, her friend who owns the “ExSalonce” has a special promotion during April. She gives a 20% discount to customers who either show that they have “Donor” on their license or to those who sign up as donors for the first time! What a unique and fun way to communicate our message during April!
Suzanne Ruff is a LifeSource volunteer who knows too well the ravages of Polycystic Kidney Disease (PKD). For several generations, her family has suffered from this often fatal genetic disorder. For National Donate Life Month and for National Donor Sabbath for at least two years, Suzanne has communicated with the Archbishop of St Paul and Minneapolis to convey information to him about donation and transplantation.
Earlier this month, Suzanne received a response from the Archbishop’s office saying that he is both supportive of our cause and that he will try, ” … to the best of my ability, to mention it in my Catholic Spirit column.” Thank you Suzanne for your perseverance and for helping us to communicate to our friends in high places.
Judy and Suzanne’s activities for April are not big and flashy acts. They don’t involve billboards or spot lights. But ultimately their work will contribute to the many activities of our volunteers that help ensure that thousands of people hear about the life saving miracles of donation and transplantation!
I hope reprinting this blog inspires people to do something special to promote organ donation. If each of us could convince just one person to become an organ donor we could end the shortage and be able to offer transplants to everyone on the list.
Please comment in the space provided or email your thoughts to me at email@example.com. And – spread the word about the immediate need for more organ donors. On-line registration can be done at http://www.donatelife.net/index.php Whenever you can, help people formally register. There is nothing you can do that is of greater importance. If you convince one person to be a donor you may save or positively affect over 50 lives. Some of those lives may be people you know and love.
You are also invited to join Organ Transplantation Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties. Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts.