Last modified: 11 May 2000
Last Chance to Volunteer
National Organ and Tissue Donor Awareness Week (NOTDAW) is upon us. Plans are in place. Volunteers are being called. This is our first big TRIO Chicago event and your last chance to join in.
If you can volunteer any time from 9AM - 5PM during the week of April 22-26 and would like to help tell the general public about the importance of organ and tissue donation, call us now. We'll have three people at each of our downtown displays so you won't be alone and we'll have materials to help you answer any questions people might have about organ donation.
Without donors, there would be no need for TRIO, so this is an important way for us to give back by helping to increase public awareness. And it should be a lot of fun.
Chapter Chartering
Thursday, June 13. Mark your calendars now. This is the date the TRIO Chicago really, truly, honestly, officially, formally, ceremonially receives the actual, true, factual, categorical, undistorted, venerable, genuine authorization via charter to be a no-kiddin', honest-to-goodness, sure-as-shootin', real-mcCoy chartered chapter of TRIO. It's about time. If we grow any bigger, they're going to have to call us a REGION!
We will invite VIPs. We will invite celebrities. We will invite politicians. We will invite the media. And of course, we invite all of you! (We don't have to invite the big shots from TRIO in Washington - they have to come to present us with the charter if they want to get a check ($$) for our memberships).
Lisa Kory, Executive Director will be featured and who knows who else may show up? Come and see for yourself.
Plans are still being made, but we do know it will be at Grace Place, 637 S. Dearborn, Chicago on June 13, 1996 from7:00 - 10:00 PM. Food, soft drinks, juice, wine and beer will be served. A minimal donation ($$) will be requested
We will provide you with all of the details and an official invitation as they become available. Don't miss this one!
A Tree Grows in…
As many of you may know, some transplant support groups have adopted the custom of planting a tree to honor organ donors during National Organ and Tissue Donor Awareness Week. This year is no different.
Organ Transplant Support (OTS) will honor their donors and donor families with a tree planting ceremony on Sunday afternoon, April 28. The event will be held at the Naper Settlement, a museum village in Naperville, Illinois. For more details, call Don LaRocco at (708) 527-8640.
TRIO International
We haven't said much about TRIO International to date so it's about time.
TRIO is headquartered at 1000 16th Street NW in Washington DC. Robert Casey, former Governor of Pennsylvania and heart/liver recipient, is President. Lisa Kory, xxxxx. is Executive Director. TRIO is managed by a board of directors elected by TRIO members (you) and is governed by an established set of by-laws. We will have more about TRIO organization in future issues of reORGANized!.
TRIO International performs many valuable functions for the local chapters. It provides a central focus for our efforts to influence the transplant community and government policies; it coordinates communications and disseminates information to local chapters on news/developments affecting the transplant community and TRIO members; it helps to establish new TRIO chapters and coordinates membership activities for TRIO members-at-large (TRIO members-at-large are those members who live in an area not covered by a local TRIO chapter); it plans and coordinates activities for the TRIO Annual Meeting.
TRIO on the Hill
TRIO is becoming a major player in attempting to set and change public policy, and is increasingly being recognized on Capital Hill as the Voice of the Patient.
Congressional staff specifically solicited TRIO's comments and input on the final draft legislation for the renewal of the National Organ Transplantation Act
TRIO is a participant of the "Friends of HRSA" (the Health Resources and Services Administration, parent agency of the Division of Organ Transplantation). The FY 1996 budget situation is still unresolved for this agency and the Division. TRIO has communicated our concerns to members of the Appropriations Committees in both the Senate and the House, urging support for continued funding for these programs, which gave such great impact on organ donation and transplantation.
At the invitation of the special Congressional Task Force for Organ and Tissue Donation, TRIO participated, as only of only three organizations, at a special meeting in February to discuss ways that Congress could create a better focus on organ donation and transplantation issues. Along with UNOS and the Coalition on Donation, TRIO presented our position, which was very well received. We were invited to continue working with this special task force. Congressional participants included (in person or represented by staff): Senators Bill Frist (R-TN) (heart surgeon), Ted Kennedy (D-MA), Carl Levin (D-MI), Senator Mike DeWine (R-OH), and Congressman Dick Durbin (D-IL), Byron Dorgan (D-ND), Joe Moakley (D-MA) (liver recipient), Pete Stark (D-CA).
TRIO Round the World
Kim Brown (Nations Capital Area Chapter), and formerly Membership Services coordinator for International, will be one of the Olympic torchbearers for 1996 as the Olympic torch passes through Washington on its way to Atlanta.
The National Academy of Sciences Institute of Medicine installed Dr. Clive Callendar as its first LaSalle D. Leffall, Jr. Chair in Surgery. Dr. Callendar is a member of the International Board of Directors.
TRIO formally welcomed three new chapters recently with Chapter Chartering Ceremonies: Memphis, TN, State of Franklin, TN, and Greater Baltimore, MD. Coming soon is Northeast Florida.
TRIO New England continues to expand! From its base near Boston it now has active satellite chapters in Maine, Rhode Island, Vermont, and New Hampshire.
TRIO New England has announced its first annual TRIO Golf Classic for mid-June.
TRIO Southwestern Michigan is continuing their efforts to make the "Gift of Life" stamp a reality. (Watch upcoming issues or call our office for details.)
TRIO El Paso recently raised a ton of money to support their activities with a walk-a-thon.
TRIO The Nation's Capital will be entering two cars in the 1996 One Lap of America road race. On June 11 , the team will be at Black Hawk in Northern Illinois, so if you are in the area, stop by and say hello.
We're Moving
OK, so we started out to have meetings at ROBI on the 1st Wednesday of each month. OK, so the 1st meeting we had was on the last Wednesday of January. OK, so there was no meeting in February - but we adhered to schedule in March! Yeah, I know, The April meeting was on a Tuesday - but that Wednesday was the 1st day of Passover! Whatta ya gonna do?
OK, so now we're moving. What's the deal you say? Well, we've simply grown to fast. We're almost at 100 members. By the time this is mailed, we'll probably be over 100 members. We've simply outgrown the space at ROBI. So we're moving to Grace Place.
Grace Place is located at 637 S. Dearborn Street in Chicago. It's a great place to have a meeting (see the following story for more details). It's in the South Loop area, near the major expressways and public transportation. We have arranged discount parking ($2.75 + $1.25 tax - mention TRIO or the meeting at Grace Place) at the 711 S. Plymouth Ct. Garage.
Grace Place has all the facilities we need and we've been able to schedule a regular date for the rest of 1996! From now on, we meet on the second Thursday of each month starting on May 9. The board will meet at 5:00PM, we'll start to mingle about 6:30 and meetings will begin promptly at 7:00.
About Grace Place
Grace Place, conveniently located near expressways, public parking and public transportation, is the new home for TRIO Chicago meetings. The mission of Grace Place Community Center is to "serve as the locus of the South Loop neighborhood, providing space for educational and recreational activities, social service programs, and special events, fostering community improvement in a welcoming environment." We think you'll find it to be an ideal place for our meetings, with rooms and facilities to accommodate groups from 5 to 150 people.
There is a charge to TRIO Chicago for the use of Grace Place and we are actively seeking a sponsor to help us defray the cost. If you should need to call Grace Place, the number is 312-922-1426.
TRIO is Your Organization!
TRIO is your organization. With that in mind, we have structured the next meeting a little differently. There will be no guest speaker. The featured guests are YOU.
Our meeting on Thursday, May 9, will be a brainstorming session. We will attempt to take the overall TRIO mission of awareness, support, education and advocacy and break it down into ideas and projects that we can accomplish as a group. In other words, we will set the plans and direction for the future activities of TRIO Chicago.
For those of you who haven't done this before - here's how it works. First, we'll break out into groups. Each group will appoint a moderator. The groups will then decide among themselves what they think we should focus on as TRIO Chicago and what the priority of the activities should be. There are no bad ideas - only lesser priorities.
Each group will then present their findings to the entire meeting. After all groups have presented their ideas, the entire group will decide on our priorities. We will then use the plans to determine the best organization for TRIO Chicago (number and type of committees, volunteers needed, etc.) and we will present the results at the next meeting.
All of this will be explained in greater detail on May 9. Between now and then, begin to think of what you think we should do and what you can contribute to accomplishing those goals. What do you want TRIO to be and how do you want to help make that happen. This is YOUR chance to make TRIO Chicago YOUR organization. Don't miss it! Hope to see you on May 9th.
To Our Members…
Some of our members can use your warm thoughts and prayers. It's not always a straight road, and there's often a backstep or a stumble along the way. We can help by letting them know we're all with them in spirit.
Bennie Fiorito and his family have had far more than their share of setbacks and difficulties. He's still in Northwestern and still fighting his way back since his liver transplant last December. His wife Mary has truly been an inspiration with her strength, steadiness and positive spirit.
Four-year-old Jennifer Tzanetopoulos is having some minor problems, also following her liver transplant in December. She looks like she's going to be fine, but mom Karen could use a little TLC.
Joyce Carbaugh , waiting for a liver, had bad spell that hospitalized her. She's fine now (but still waiting!) and has a renewed enthusiasm. Keep up the positive attitude, Joyce.
Media Watch
Not much to report on this month. Chicago Hope is in reruns.
The Discovery Channel had an episode of a program called The Operation in which they compressed a liver transplant into an hour. For you new livers who always wondered exactly what your surgeons did, the show was fascinating. And not too bloody either. This should be rebroadcast again so watch for it. If you just can't wait, we have a copy in the library.
The March 11 issue of Forbes Magazine contained a major article on organ procurement organizations and transplant centers. It sparked a lot of discussion in the transplant community.
The April issue of McCall's had an article about the Green's and the 'Nicholas effect'. If you're not familiar with this inspiring story, pick up a copy.
The Library
No book review this month. We've been too busy watching videos to get much reading done. Well, actually, we did finish Primary Colors, but that's a little too risqué for review here!
We'd just like to remind you that libraries aren't just for books. We also have a collection of really great videos.
"The Nicholas Effect" , the story of the incredible impact of the tragic death of a young boy and his parents' gift of the donation of his organs.
"Transplant Games" , inspiring videos of the 1992 and 1994 Transplant Games, demonstrating that "Transplantation Works" and celebrating life.
"Talk, Talk, Talk" , a video on organ donation aimed at high school kids, starring Wendy Marx and Carl Lewis.
The October 1995 Organ and Tissue Donation Campaign ads from the Coalition on Donation.
"You Can Climb Again - The Challenge of Organ Transplantation" , the transplant journey from getting listed through recovery and beyond, using mountain climbing as a metaphor (see Climb Every Mountain, elsewhere in this newsletter), by the Upjohn Company.
"Stars for Life" , a fitness video designed especially for transplant recipients (Statlander's).
"Celebrating Life" , an organ and tissue donation quiz, with Ben Vereen (AT&T).
If you want to borrow any of these materials or even get your own copy, let us know. We can arrange to bring them to the next meeting for you if you can't get downtown any earlier - and you can return them to us the following meeting.
TRIO Annual Meeting
Mark your calendars. Pack your bags. Take the dog to the kennel. And send the kids to grandmas. We're off to the Grand Ol Opry!
This year the TRIO Annual Meeting will be held September 26-28 at the Grand Ol Opry in Nashville, Tennessee. Look at these wonderful opportunities:
From those of us who have been there (to the annual meeting), it's an incredible experience and if you can afford the time and expense to attend, it'll be well worth your while. And we understand the Grand Ol Opry is pretty special too.
More details will follow as they become available.
Photographer Wanted
Help Wanted. Professional or amateur photographer. No pay. Bad Hours. But, FREE FILM!
If you have ever wondered why this newsletter has no pictures, it's because this organization has no photographer. We tried pictures at the first meeting. Randy Heyn-Lamb made an admirable effort. But dark shadows on a black background just don't print very well. I can't blame it on Randy - it's the Kodak box camera I got from my mom in 1953.
Seriously, we need help. If you can spell canera - camana - CAMERA, give us a call. We especially need you for the Chapter Chartering party. (Did I mention that the job includes FREE FILM?)
Spreading the Word…
Unaccustomed as he is to public speaking, John Butorac, our President, is at it again. On April 16, John will tell the Loyola University lung transplant support group everything they've ever wanted to know about TRIO. This will also be the introduction of our new TRIO Chicago brochure. John is told that 40-60 persons may attend and he hopes to come away with several new members for TRIO Chicago.
On Monday May 20, at the request of Dr. Raymond Pollack, Chief of Transplantation, John will address the gastrointestinal organ transplant team at the University of Illinois. This is a wonderful opportunity to help bring our local professional medical community up to speed on what TRIO plans for the future.
Dick and Mary Cygan decided to do their part for donor awareness last month at the blood drive at Signode Corporation. Figuring that people who are willing to give blood ought to be willing to register as organ donors, Dick and Mary took their message to the workplace. They signed up a few and were gratified to see how many others were already registered. It was also a great opportunity to educate and to put a face on organ donation and transplantation. Dick and Mary are taking their act on the road again this month, addressing a retirees seminar, again at Signode
We know there are a lot of you out there who also make public appearances. Tell us about it, so we can tell everyone else.
L'Chaim
It's the season of rebirth, and rejoicing in it. The fleeting spring in Chicago makes it even more precious. Blink, and you may miss the first buds on the trees, the first green shoots of grass again coming alive, the soft warm breeze. Before we know it, everything will be green and alive again, as if it had always been that way, and we will again take it for granted. But stop now, if only for a moment, and enjoy the wonder of it. Celebrate it. To life!
Celebrity Transplants
Rod Carew 's daughter, long awaiting a bone marrow transplant, finally received a stem-cell transplant. At last word, she was doing well. Rod spearheaded a very successful campaign to raise awareness of the need for bone marrow donors and to sign up more people for the registry.
Erma Bombeck , after a long wait, finally got her new kidney. Erma is a primary example of the fact that celebrities do not get special treatment or priority on the waiting list.
Former U.S.Senator Paul Tsongas is awaiting a bone marrow transplant. Fortunately he has a sister who looks like a good match.
Welcome
There are too many new members to welcome them all here. But we would like to recognize those members of the medical community who are support TRIO through their personal membership:
Dr. Carl Backer - Children's Memorial Hospital
Dr. V. Theodore Barnett - University of Illinois Medical Center
Dr. Casimir Firlit - Children's Memorial Hospital
Dr. Richard Lewis - Loyola University Medical Center
Dr. J. Michael Millis - University of Chicago Hospitals
Dr. Frank Stuart - Northwestern Memorial Hospital
Welcome and thank you all!
Climb Every Mountain
While you were on the transplant list, did the wait make you climb up the walls? Well, here's a chance to use all of that experience you gained.
A man named Jim Jurrens is organizing the Denali Transplant Challenge. He is putting together a team of transplant recipients to climb Denali (a.k.a. Mt. McKinley). Yes, that's correct. MT. MCKINLEY!
In the spring of 1997, you will scale the 20,320 ft. West Buttress. You will descend the same way (hopefully, safely) or the team may decide to return via a traverse. This is a high altitude climb and the trek is expected to last 15-25 days. Experienced guides will be provided
.
If you decide to go, please check with your transplant team first and remember to take plenty of cyclosporine. There are no Walgreens on Denali.
This is without a doubt the most interesting way I've seen to promote organ and tissue donation. If you are interested in participating, contact the TRIO Chicago office or your nearest psycho-analyst.
Medical Deductions
When the IRS changed its regulations to limit the deduction for medical expenses to the excess over 7.5% of your income, a lot of us probably thought the deduction was gone forever. But that was before we entered the world of transplantation. Even if you've got incredible insurance coverage, there are still a lot of medical expenses that are out of pocket. Not the least of which is transportation to and from your medical appointments. (All those blood draws!) And medical supplies that your insurance just doesn't cover. And… And… When we did our tax return, we were astounded at how much all those things added up! So take another look at what's allowable, and dig through those receipts.
Okay, so it is after April 15th. But you can always file an amended return.
Calling All Athletes
The Transplant Games will be here before we know it. And Salt Lake City looks pretty appealing. You don't even have to be a real athlete. There are events for all levels of skill and fitness. All that's required is your enthusiasm. The 1st Team Illinois meeting is scheduled for Thursday, April 25 at Loyola Medical Center. We'd like to get a TRIO Chicago contingent on Team Illinois. If you' re interested, please call our office.
Arriverderci ROBI
Many thanks to ROBI, who gave us our first home and lots of moral support. We look forward to continuing working with the many wonderful people there, especially Jerry Anderson, Lorraine Wilmot, and Randy Heyn-Lamb. Thank you the use of your facilities, your encouragement, and your continued support.
Never Too Old
One question that keeps coming up is how old is too old to be an organ donor or recipient. Victoria and Robert Whybrew eloquently answered it. Setting the record, Victoria, 78, recently donated a kidney to her husband Robert, 77. Both are doing just fine.
Getting Ready for NOTDAW
Lorraine Wilmot, of ROBI, and the person responsible for their public education efforts, was the featured speaker at our last meeting. Following a presentation of what ROBI does in terms of public education, Lorraine, with a little kibitzing by Randy Heyn-Lamb, prepared us for NOTDAW and our donor awareness activities beyond that. She provided us folders with background information, fact sheets, questions and answers, a sample speech, and the latest statistics. And from her vast experience, a ton of helpful hints. Many thanks to Lorraine!