Last modified: 11 May 2000
Chapter Chartering Celebration
June 13 is scheduled for our TRIO Chicago chapter chartering celebration. This is a lot like getting married after you've been living together for 20 years.
Although we have been legal under the law as an Illinois corporation, the presentation of the chapter charter formally cements our relationship with the rest of the TRIO family. It probably isn't as important to you as your transplant, but it's nonetheless a day worth celebrating.
Lisa Kory, Executive Director of TRIO will be on hand for the official presentation. We've also invited George Ryan and Mayor Daley to join us. Press releases will go out soon and we hope some media will attend - let us know if you have any direct contacts.
You should have received your invitations by now, but just in case, check out the flyer included in this newsletter. Hors d oeuvres will be served along with beer, wine and soft drinks. There will be music and fun along with the formal program. Dress is party casual. We're asking for a $10 donation to cover costs, but if money is a problem now, don't let it stop you from attending.
Please RSVP as soon as you can. We're spending your money on this and if we don't have a good count of attendees, we're going to waste some of it. In all, we've sent out almost 300 invitations and we hope to have a grand blast!
Because of the celebration, there will be no June meeting. Regular meetings will begin again on Thursday, July 11.
See you on June 13!
NOTDAW
"Do you accept any keyboard instruments or are you just taking organs?" said the passerby, in all seriousness, to our volunteers at the City Hall display during National Organ and Tissue Donor Awareness Week (NOTDAW). I suspect that the subsequent conversation proved somewhat embarrassing, but nevertheless, raised someone's awareness.
Funny? Yes. FUNNY? NO! This is fortunately an isolated case, but the question and questioner were, in fact, real. THIS IS WHY IT IS IT SO IMPORTANT FOR US TO TELL EVERYONE WE KNOW THAT TRANSPLANTATION WORKS AND ORGAN DONATION IS CRITICAL!
Congratulations and thanks to everyone who helped raise awareness during NOTDAW. For the first official project of TRIO Chicago, the week was an unqualified success! We reached thousands of people through our displays at City Hall, the Daley Center, the Harold Washington Library and the James R. Thompson Center. Dozens of people signed their driver's license or donor cards on the spot and several thousand took information home to learn more or discuss organ donation with their families. At least 2,000 enjoyed the cakes, brownies and danish we distributed that were generously donated by Sara Lee Corp.
Too much happened to report it all, but highlights included:
All in all it was a fantastic week. You should all be very proud. ( I don't know about you, but although it was a lot of work, I had a great time. I can't wait for the next event!)
Air Awareness
No, not Michael Jordan, but TRIO member David Erickson on the air. On April 24, David, a kidney recipient, along with Dr. Lawrence McChesney of Rush and Jean Cummings of ROBI, were featured on WKRS in Waukegan to discuss NOTDAW, donor awareness and transplantation. On the Dan Chap afternoon call-in show, they talked about organ donation, the importance of signing your driver's license and shared their transplantation experiences. Well done, David!
Air Awareness 2
Ok, Christine, Michael Jordan.
In case you have been living in a cocoon, the Bulls superstar has joined a national campaign to promote organ and tissue donation. This is the first time that a celebrity of Jordan's stature has partnered with the transplant community to address this critical issue.
MJ has donated his services to the Coalition on Donation, a non-profit alliance of organizations dedicated to public education and awareness regarding organ donation. TRIO works cooperatively with the Coalition.
Michael has taped a number of public service announcements that will be aired on radio and TV throughout the country. Also look for Michael on billboards, transit advertising, direct mail and other venues promoting organ donation. We'll get copies of the display materials as they become available.
NOTDAW Volunteers
Thanks to the following members and friends who volunteered to man the displays and make NOTDAW such a rousing success:
| Dennis Barr | Lisa Bebenek | Paul Bebenek |
|---|---|---|
| Garcina Bradley | Mike Brown | Peggy Burse |
| John Butorac | Cheryl Burtsfield | Terry Costello |
| Dick Cygan | Mary Cygan | Sue Daldegan |
| Christine Duda | David Erickson | Jayne Farrago |
| Diane Frese | Tom Gall | Kiki Gonsiorek |
| Lisa Hayes | Donna Isaacson | Jan Jeffers |
| Mike Lamoureux | Diane Legge-Kemp | Annette Lydon |
| Dan Lydon | Moira Lydon | Joy Maki |
| Barbara Marrero | Jeanette Marrero | Steve Moore |
| Nancy Myers | Brian Nestler | Marilyn Nestler |
| Sandy Nothegger | Mary Palanchar | Doris Payne |
| Richard Payne | Priscilla Santiago | Jill Sederberg |
| Mitzi Singel | Jeff Sparks | Tina Weiss |
| Kathy Wolowiec |
Donor Recognition Ceremony
Sunday, April 14, was the National Organ Donor Recognition Ceremony, held in Washington, DC. TRIO Chicago member, Kiki Gonsiorek, attended. Kiki, tragically lost her son in a car accident two years ago at Christmas and donated his organs. While in Washington, Kiki met Charlie, the recipient of her son's heart. Kiki's experiences were featured in the suburban Daily Herald and the Pioneer Press. The following is edited from a posting Kiki made to the internet on the day following the ceremony.
"I attended the ceremony yesterday. What a great day! The ceremony was very touching, bittersweet, emotional and peace-bringing. After the ceremony, I met my son's heart recipient for the first time. Words cannot express how emotional this meeting was. We hugged a lot, cried, laughed, talked and talked and talked. We looked at many pictures and took even more.
Charlie is his name. I also met his wife and 8 year old son. Charlie had waited with great anticipation to meet me. He thought that the ceremony would be a good time to meet - and it was, except for the media's attempts to interfere. I just thought that it was too private and too intimate to share with the public - especially since it was our first meeting. We just wanted to hug.
I had no expectations of Charlie and he had none of me. He did feel very relieved at having the opportunity to say thanks. Charlie is a very sensitive man. He asked me to put my hand on his heart to feel it beat. That heart that was beating was his. It was given to me for 19 years, but now it is his gift - it's no longer mine.
I will never forget this day as long as I live. I left our meeting with an indescribable joy and peace of mind. Charlie had been only 2 weeks from dying and I actually just witnessed a miracle!
P. S. Charlie and I have decided that we will do all we can "together" for organ donor awareness.
Kiki also thanks everyone involved for the wonderful ceremony. However, it is Kiki who deserves the thanks of all of us. Through Kiki and those like her, we have been given the gift of life. Words can never express the thanks we feel every day. To Kiki and donor families everywhere, thank you and God bless.
Editor's P. S. to all recipients - Kiki, like many other donor family members, felt that hearing from the recipients or her son's organs was important for her to be able to bring a sense of closure to the experience of her son's death. If you haven't yet written a thank you letter to your donor family, now would be a good time. A simple thank you is enough. An anonymous letter can be sent through the Regional Organ Bank of Illinois or your transplant center. Contact us if you need further information.
Media Watch
Chicago Hope, the target of considerable criticism for their previous treatments of the topic of transplantation, just can't let go! In a recent show, clown doctors want to perform a red nose transplant.
During Donor Awareness Week, news anchor Robin Robinson, of Channel 32 News, wore a green ribbon pin on the air. (Thanks to Lynn Levy.)
Also during Donor Awareness Week, CBS's Good Morning America featured a donor mother (now pregnant) and two families with tiny children who received transplants.
A documentary on Channel 11, Die and Let Live, explored many issues involved in organ donation and transplantation, including reasons people say no to requests for donation, the concept of brain death, how patients deal with the long wait, as well as the critical shortage of donor organs.
NBC's Real Life profiled a young double lung recipient, whose twin sister did not survive the wait. The show surprisingly avoided sensationalizing and sentimentalizing the story, and portrayed a remarkably fair picture of transplantation.
Brainstorming Results
Somehow our weather request to the Man
Person upstairs got confused. We were sure we said we were going
to have a brainstorming meeting on May 9, but somehow we
ended up with just the storming part. It seems as though whenever
we schedule a TRIO meeting, the weather becomes front page news.
Well, NO MORE confusion! We've consulted the almanac and we KNOW the forecasts (see the following report). Future meetings may not all be on ideal days, but we're the transplant community and we're tough!
So, we it stormed outside and we brainstormed inside. The results were a little surprising. We primarily talked about the monthly meeting and plans for 1996 activities. The summary results are:
These directions will be translated into real plans over the next couple of months. Obviously, this is a lot of work and we can't do everything at once. Everything depends on the participation and support of our members. We'll announce the programs and events as soon as the plans are final. All plans are dynamic by nature, so expect some changes throughout the year. But we'll stick to your direction as best we can.
Your Board of Directors would like to thank all those who participated in the May 9 meeting or otherwise informed us of their wishes. You input was very valuable and is greatly appreciated. Special thanks to Mike Lamoureux and Dianne Legge-Kemp for leading the group discussions, especially to Dianne for doing it right!
Well Done!
Take Me Out to the Ball Game
Under George Ryan's direction, the Illinois Secretary of State's Donor Awareness Program is organizing a donor awareness day at White Sox park. On June 10 or 24 (day to be determined), 300-400 recipients will receive free tickets to the Sox game. A special area will be reserved for seating and a corporate sponsor is being sought for a donation of food and drink. Plans may include a recipient throwing out the first pitch. The state's donor awareness ads will be played between innings the scoreboard and an information table will be manned to pass out donor awareness materials.
TRIO Chicago is on the list to receive tickets, but we have no detailed information yet. If you are interested in attending this event or volunteering to help, please let us know as soon as possible
Condolences
"Do not go gentle into that good night. Rage, rage against the dying of the light" - Dylan Thomas.
Bennie Fiorito finally lost the battle he'd been fighting so valiantly since his liver transplant last December. Most of us did not ever get to meet Bennie. But he touched us through the strength and courage and grace of his wife Mary. They have been an inspiration to all of us along the transplant journey.
Our deepest and heartfelt sympathies to his entire family. The loss of Bennie and others who have not made it through the wait or the recovery emphasizes just how precious and fragile is this gift of life.
One, United Voice
The transplant community faces continual challenges. Candidates face severe illness and the ever-increasing shortage of organs. Recipients face lifelong expenses and the substantial barriers to employment. We all face significant issues regarding medical expenses, insurance and the need for support services. Individually, we cannot hope to overcome these challenges. Only through one, united voice can we hope to address our collective concerns.
We want TRIO to provide that one, united voice. As an organization, TRIO is well past 3,000 members. We hope to attain our goal of 5,000 members by the end of 1996. TRIO is already the recognized voice for transplant recipients in Washington, but as our membership grows, our voice becomes louder.
We can best expand our voice through your help in recruiting new members. If you know others interested in transplantation, encourage them to join TRIO. The next time you are in for tests, introduce yourself to others in the waiting room and tell them about TRIO. Have them give us a call (312-922-0142) and we'll mail them more information. Better yet, being them to the chapter chartering celebration on June 13 or to our next regular meeting.
Remember, there is no financial commitment for information or for membership. What we do need are commitments to be part of the one, unified voice that speaks for the transplant patient. We face many common issues. Divided, we stand alone. Together, we can change the world.
TRIO Annual Meeting
Another reminder to mark your calendars for TRIO's 8th annual conference, "Developing Strength Through Common Goals" . This years meeting will be held September 26-28 at the Grand Ol Opry in Nashville, Tennessee.
Airfare on Southwest is only about 100 bucks round-trip and the Opryland hotel will be available for about 90 bucks a night. This is a great conference and a wonderful opportunity to extend a tax-deductible trip into a vacation. If you're into transplantation, country and western or just like to have fun, you shouldn't miss this opportunity. Lots of TRIO Chicago members will be there.
For a copy of the "Music City Vacation Guide", write the Nashville Convention and Visitors Bureau, 161 Fourth Avenue North, Nashville, TN 37219, call the tourism hotline at 615-259-4700 or visit them on the internet at http://nashville.musiccityusa.com/tour. Watch this newsletter for more details as they become available.
The Donor Card Insert Act
Senate Bill S 948, the Donor Card Insert Act, is legislation introduced into the U.S. Senate, that would include organ donor card inserts in all 1997 Federal Income Tax Refund Checks. If passed, this legislation has the potential to carry the message of the importance of organ donation to over 70 million Americans. Without bipartisan support, however, the bill has little chance of passage.
This is one heck of an opportunity to promote donor awareness. So fire up your word processors, pull out your pens or sharpen your pencils. In order to get out the votes we need to be heard. The following is a sample letter to write to each of your two U. S. Senators in support of the legislation.
Dear Senator (Last Name):
I am writing in behalf of the over 42,000 Americans awaiting a life-saving organ transplant. As you may know, over 18,000 transplants are performed each year, affording individuals the opportunity to once again lead normal and productive lives. However, due to the severe shortage of organs for transplant, 8-10 of our friends and neighbors die each day. The solution to this tragedy lies in education and awareness of the critical need for organ donation.
The Donor Card Insert Act, S 948, would direct the Secretary of the Treasury to enclose a card encouraging organ donation with each income tax refund mailed between February 1 and June 30, 1997. This donor awareness card would reach over 70 million Americans for a cost of less than $200,000.
(Insert you personal story)
I am sure you can appreciate the importance of this legislation and the criticality of the need. By supporting and co-sponsoring this bill, you will have made a significant contribution toward saving the lives of those Americans awaiting transplantation.
Thank you for your support.
Sincerely,
(Your name)
Mail your letters to:
The Honorable Carol Mosely-Braun The Honorable Paul Simon
The United States Senate The United States Senate
Washington, DC 20510 Washington, DC 20510
Cyber Corner
George Ryan has struck again, this time on the internet! The Secretary of State now has a home page devoted to organ and tissue donation.
Set your browsers to http://www.sos.state.il.us/depts/drivers/programs/donor/donor html and surf away. Included are "Facts About Organ and Tissue Donation", "Test Your Donor I.Q.", "Life Goes On - Donor Success Stories", "Register Online to Become a Donor" and links to "Other Organ and Tissue Donor Information on the Internet".
Also included are hyperlinks to TRIO and TRIO Chicago! (Unfortunately, the hyperlinks don't work - we are trying to find the webmaster to fix the problem.) Try the "Test Your Donor I.Q. area and see how well you score!
All in the Family
Our congratulations to Rita Wilson-Janota who received a kidney from sister Barbara Collins. And to sister Mary Wilson-Crocker and brother Joseph Wilson who provided moral support. All are doing just fine.
Change of Heart
After too many false alarms, Jeff Sparks has changed his order to include a new heart as well as lungs. Previously he tried changing transplant centers, but that didn't work. Looks like he'll try to do whatever it takes. Hope the wait is over soon, Jeff.
Poor John's Almanac
The following forecasts are in effect for the Chicagoland area:
June 13 - Unseasonably cold, high of 15 below. 100% chance of snow with probable gale force winds from the arctic. Unsafe travel conditions.
July 11 - Blistering heat. Probable tornadoes expected to touch down within the city limits, especially in the south loop. Stay indoors, preferably in the basement.
August 8 - Unbearable humidity. Probable giant hailstorms. Life threatening heat with temperatures expected to be 30 degrees above normal.
September 12 - Heavy rainstorms and flooding anticipated. Probable overflows of the deep tunnel and Chicago River, causing downtown flooding. Travel by kayak only.
October 10 - Hazardous travel conditions due to ice storm. Power lines down and city-wide blackout. Probable martial law declared due to looting and vandals.
November 8 - Early morning downpour, turning to blizzard by noon. Freezing rain follows with blizzard conditions expected by rush hour. Nary a fit night for man nor beast.
December 12 - Sunny, mild, temperatures in the mid 70's. No wind. Hell freezes over.
By the way, mark your calendars. These are the dates TRIO Chicago will meet for the rest of 1996. The topics for each meeting will be "Support Group Meetings versus the Weather". Don't miss out!
UNOS Statistics
The number of transplants performed in the United States from January through December, 1995
| 914 | kidney-pancreas transplants |
| 10,853 | kidney transplants (3,173 from living donors) |
| 111 | pancreas transplants |
| 3,923 | liver transplants |
| 2,359 | heart transplants |
| 69 | heart-lung transplants |
| 863 | lung transplants |
That's all for now. See you next month!