MAY 1996 -- Volue 3, Number 4
NATIONAL ORGAN AND TISSUE DONATION AWARENESS WEEK EVENTS
April 21-27, 1996

THE NATION'S CAPITAL AREA CHAPTER
Transplant Recipients International Organization
P.O. Box 7633, Arlington, VA 22207, (703) 920-TRIO

On April 23, 1996 the Senate Labor and Human Resources Committee held an open hearing on "Saving Lives: Increasing Organ and Tissue Donation" in observance of National Organ and Tissue Donor Awareness Week. Senator Bill Frist (R-TN), a former heart and lung transplant surgeon, presented the opening statement (below) to the audience of over 150 attendees and satellite audiences in Houston, TX and Nashville, TN. There were six panels of witnesses (below) which included "patients, public servants, doctors, and lay people who are making a difference, and participating in the life giving miracle of trans- plantation." The goal for this hearing was to emphasize the need for increasing awareness and education for organ and tissue donation. Future hearings will be announced.

FOR IMMEDIATE RELEASE: Contact: Jill Miller

It is a pleasure to be here today as we kickoff Congressional observance of National Organ and Tissue Donor Awareness Week. This is a special day for me, because as most of you know, I am by trade a heart and lung transplant surgeon. As a medical doctor, a citizen legislator, and United States Senator, I have the privilege today of representing Tennessee, and speci ically, my transplant patients who have 'oined us from Nashville. We have come together on behalf of transplant patients throughout the nation. And we also speak today for those whose voices are now silent: the many, many individuals who have died waiting for a life-saving organ transplant

Thouch I do have an abiding personal interest in the subject matter before us, this is not simply my hearing. Senator Kassebaum has been a staunch supporter of donation, and as the Chair of the Committee on Labor and Human Resources, she has provided the consistent leadership that has made this event possible. And Senator Kennedy, an active member of the bipartisan Congressional Joint Task Force on Organ and Tissue Donation, and a longtime advocate for transplantation, has also provided valuable leadership and support. Many members of the committee, including Senator DeWine, whose family's experience has made him a lifelong advocate, care very deeply about these issues. I thank each and everyone of you for taking the time to be here today. I also want to thank members of the greater transplant community, who have united with us in this effort. For once, we have laid aside many of the divisive issues to focus on that which we can all agree on: the need to increase donation. I wish that we could hear from each and every person and organization associated with transplantation, but we are simply opening the dialogue today that will continue throughout the week, as we focus on ways to save lives through increased donation.

The need for a public forum like this became very clear last November as we worked in the Labor Committee to reauthorize the National Organ Transplantation Act. (NOTA.) In our discussions regarding the many difficult issues surrounding transplantation, it became clear that the primary problem was a shortage of available organs. A number of Senators discussed many of the questions common to donation, and if memory serves me correctly, Senator Kennedy suggested that we hold a hearing to bring these questions into the public square. Senator Kassebaurn immediately agreed. As a Committee, we realized that as public servants we had an obligation to do what we could to increase awareness, especially in light of the study that showed that donation could be increased by 80% simply through public education. Through this hearing, we are reaching out apart from our normal legislative duties to use our resources for public education. We look forward to hearing today, from patients, public servants, doctors, and lay people who are making a difference, and participating in the life giving miracle of transplantation

PANEL ONE -- Mr. Carl Lewis, Co-founder of the Wendy Marx Foundation and Olympic gold medalist (Lewis will testify by teleconference.from Houston, Texas where he is training). Wendy Marx is a friend of Carl Lewis, and she underwent a lifesaving liver transplant at age 22.

PANEL TWO

• Senator Mike DeWine, (R-OH) -- Senator DeWine donated his daughter's eyes when she was killed in a car accident.
• Representative Joe Moakley, (D-MA) -- Congressman Moakley had a liver transplant last July.
• Senator Byron L. Dorgan (D-ND) -- Senator Dorgan will speak about the Organ Donation Insert Card Act, adopted unanimously as the Dorgan-Frist amendment to the Health Reform Act.

PANEL THREE -- Ciro V. Sumaya, M.D., M.P.H.T.M.: Administrator, Health Resources andServices Administration, Department of Health and Human Services. Dr. Sumaya will discuss the Administration's role in transplantation. He will be accompanied by the Division of Organ Transplantation's director, Judith Braslow.

PANEL FOUR

• Mr. Rex Scott, Wingo, Kentucky -- Scott is a lung transplant patient of Senator Frist.
• Mr. Tom Meredith, Antioch, Tennessee -- Meredith will testify regarding his family's decision to donate the organs of his two sons, who died in separate accidents; his wife later underwent an organ transplant.
• Ms. Nicole Brantley, Valdosta, Georgia -- Ms. Brantley's brother Jason died waiting for a heart-lung transplant.

PANEL FIVE

• Dr. Ronald Ferguson, President of Ohio Transplant Consortium; Chief of Surgery at Ohio
• State University; Secretary of the American Society of Transplant Surgeons; and former United Network on Organ Sharing board member -- Dr. Ferguson will discuss his experiences in the transplant community.
• Mr. Howard M. Nathan, President, Coalition on Donation; Executive Director of Delaware Valley Transplant Program -- Nathan will discuss a new ad campaign to increase donation featuring NBA star Michael Jordan and will discuss other efforts of the Coalition.

PANEL SIX

• Clive Callender, M.D., F.A.C.S., Principal Investigator, National Minority Organ Tissue
• Transplant Education Program -- Dr. Callender will discuss the importance of increasing minority donation, and highlight his program.
• Mr. Bill Kemp, Sumner County Clerk, Chairman, Tennessee County Clerks Organ Donor and will discuss other efforts of the coalition.
• Awareness Foundation -- Mr. Kemp will discuss a program that allows county clerks in Tennessee to receive a $1. 00 donation ftom motor vehicle registrants every time they renew or purchase license plates to promote donor awareness.

In celebration of Summer, TRIO members and friends will be gathering for the TRIO Annual Picnic on Saturday, June 22, 1996. Thanks to the efforts of Ken Morisugu, MD, the picnic will be held at the National Naval Medical Center picnic grounds and pavillion in Bethesda, Maryland. Festivities begin at 11:00 am with a catered lunch, courtesy of Rocklands Barbeque, at 12:30 pm. The picnic planning committee including Kim Brown, Sheila Cabiness, Daryl Hollis and Don Seeley, has been busy planning the event. Activities will include volleyball, badmitton and horse shoes. A three-legged race is also planned. Members of Team Nation's Capital, will be on hand to join in the fun and show their team spirit. Come join in the celebration; catch up with old friends and meet new ones. [Note: Date Change]

As we breathe a sigh of relaxation, perhaps mixed with relief, as NOTDAW 1996 passes into history, TRIO Nation'sl Capital Area can feel justly pleased. I'm thinking about three special events, two of which were commemorative and one celebratory.

The first, which occurred on April 14th before NOTDAW officially began (which was an appropriate kickoff event) was the National Donor Recognition Ceremony, sponsored by the Division of Transplantation and held at the beautiful Natcher Center on the grounds of the National Institutes of Health. [See article by Don Seeley.] It was beautiful and moving, and I'm glad that our Chapter had an important part to play.

The second event (although chronologically the last) was held at the National Presbyterian Church on Nebraska Avenue on April 28th, sponsored by WRTC, "In Honor and Thanksgiving" of organ donors. The choir of St. Columba's Episcopal Church furnished the choral selections. Prayers and the benediction were delivered by Rev. Diana L. Ley, a donor sister. The principal address was delivered by The Rev. Canon D. Dalton Downs, Rector of St. Timothy's Episcopal Church. You will remember Father Downs as the recipient from a parishioner who designated that he should receive her heart. Several donor family members and several recipients addressed the congregation. It was an emotional experience, to the point that I had difficulty getting through the few words I was asked to say on behalf of TRIO. Immediately following the service, our Chapter hosted a reception for all participants, beautifully planned and executed by Marilyn Dueppen. I'm told that the service and the reception were attended by about 400 people, roughly half of whom were donor family members and the otherhalf recipients & their families.

The last event (the middle one chronologically) was our highly successful dance held April 27th. Under the leadership and planning of Daryl Hollis, 75 members and guests enjoyed the great music and good food. A number of new members and guests attended. I'm pleased to say that it was impossible to discern who was a transolant and who wasn't. From the general level of noise/frivolity, I think most of the recipients didn't know either.

In addition to these events, Chapter members participated in garden rededications, manned hospital lobby information tables, and gave speeches. All in all, a very satisfactory NOTDAW. I'm particularly pleased that our Chapter was well represented at the two commemorative events. Certainly part of our job is to continue to thank our donor families-again and again-for their courage and selflessness. And as for the dance, that's part of our job too: to show that TRANSPLANTATION WORKS! And we can have fun doing so.

The ceremony on April 14th started with the Presentation of the Colors by the Armed Forces Color Guard and the national anthem was played with tremendous feeling on the piano by Noland Williams. Judy Braslow, who heads up the Division of Organ Transplantation, and Citro Sumaya, Administrator of Health Resources and Services Administration, gave a welcome. Ken Moritsugu, Assistant Surgeon General, gave a tribute to America's donors. Ken is very involved with promoting organ donation. He is a member of the DC Multicultural Transplant Public Education Task Force, a WRTC board member, and actively involved in TRIO. His talks to donor families, being a donor husband himself, are always heartwarming.

Bona Cheri Wells, from Memphis, who gave a kidney to her cousin's husband, sang a very soulful musical selection. Cheri was a backup singer for Patti Labelle. James Redford (Robert Redford's son), a liver recipient, gave a moving tribute to the donor families in a segment of the program entitled "Words for the Unknown Heroes". He eloquently expressed, for all recipients, our gratitude and admiration for our donor families.

On behalf of all recipients, Chick Abeles called each family forward to receive a rose bouquet provided by TRIO/NCAC. Kim Brown, a three time kidney recipient and Candi Thomas, a 14 year old liver recipient, handed out the bouquets. Each family received applause as they came forward. The Central Pennsylvania Coalition on Donation also gave each family the "Gift of Life" donor medal. Reginald Green, who donated his 7 year old son Nicholas' organs in Italy, was the first to receive a bouquet. One family got particularly strong applause as 14 family members came forward to pay tribute to their loved one. An older man who is a heart recipient received a bouquet and medal for his teenage donor's mother who was unable to attend.

At the conclusion of the ceremony, Chick asked all recipients to stand and gave the donor families a standing ovation. As I looked around, I saw few with dry eyes. The ceremony was concluded with another selection by Ms. Wells, "The Wind Beneath My Wings", which, as always, brought tears to everyone's eyes. With the emotional atmosphere in the hall, Cheri almost couldn't sing at first, but did an inspiring job.

A reception followed, where many hugged, cried and rejoiced. Recipients got to meet donors and all participants shared their feelings. The ceremony was particularly meaningful and personal to me because two of the donor families who attended were Puerto Rican friends of mine. They were so grateful that I had invited them to the ceremony. It brought a lot of "closure" in their grieving process and allowed them to honor their loved ones as well as to be honored themselves for their valor and love of mankind. It was a beautiful Spring day...

The National Kidney Foundation and MOTTEP (Minority Organ Tissue Transplant Education Program) co-sponsored a kickoff luncheon on April 9, 1996 at St. Timothy's Episcopal Church. This launch a new and ongoing project to inform and educate local clergy on the prevention of organ diseases and the increasing need for organ transplants in the Washington, D.C. metropolitan area. Members of the clergy along and of the transplant community were presented with very touching and inspiring testimony from Rev. Canon Downs (heart recipient), Mrs. Rose Bucksell (Donor Mother), Ms. Ximia Wellman (kidney recipient), and especially from Mr. and Mrs. Warrik McKutchin whose 5 year old son will need a kidney transplant in the near future.

Armed with information and new insight, the clergy can present the subjects of disease and organ transplantation along with grieving and spiritual counseling and related issues to their congregations in a variety of ways. Several suggested ways of getting the message across are through sermons, providing free preventive health screening at health fairs and promoting panel discussions at churches and temples. A Speakers' Bureau consisting of volunteers is available to assist with these events. Any member of the religious community who wishes to become involved in perpetuating "the gift of life" may contact Michelle Chuk (NKF) at 202-244-7900 or Curtis Yeager (MOTTEP) at 202-865-4888.

A Donor Garden Rededication Ceremony during NOTDAW took place Wednesday, April 24th at Shady Grove Adventist Hospital. A prayer was offered by Ossie Heaton, who made a poignant analogy between the Gettysburg Address, with its consecration of the Battlefield, and the Donor Garden Dedication. Welcomers included Margaret Peterson, Vice President of the Hospital, Dr. Barry Aron, Transplant Team Urologist, and Al Leon, TRIO Representative.

Gene Holzapfel, heart recipient, told "his story". Heartfelt presentations were made by Kathryn Stebbins (who donated her Mother's organs) and Jeannie Lohmoyer (who donated her Sister's). Al Leon rededicated the Garden. Thanks to Rick Kolovich, Senior Transplant Coordinator and his staff for their well-planned program.

NOTDAW was celebrated at Howard University (HU) by rededicating the Donor Memorial Garden on Thursday, April 25th. Welcoming remarks were made by Christine Wilson, TRIO Board Member, and Mr. Curtis Yeager, Coordinator of the HU Transplant Department. The invocation was given by Rev. Loretta Walls and Lisa Cory, Executive Director of TRIO International greeted the participants. Eloquent remarks were made by Mrs. Rose Bucksell (Donor Mother), and a group photo of all recipients and candidates was taken. Special thanks to Mr. James Christian, Director of Facilities Management at HU, who not only made this successful program possible, but gave supportive words on the transplant program and TRIO initiatives. Chick Abeles, President of TRIO/NCAC rededicated the Donor Memorial Garden and Rev. Walls closed the ceremony with a benediction.

Recipients, living donors, family members and friends "celebrated our transplant successes" at a Spring dance on April 27th at the Best Western in Arlington. The highlight of the evening was a cake celebrating the "21st anniversary of the 39th birthday" of Nancy Brady, our Godmother and Guiding Light. We all sang "Happy Birthday" and DJ Bob Abrams helped out by playing "Happy Birthday, Baby." Then everyone got to the cake -- and Nancy and Claude's company too! Special thanks to Chapter President Chick Abeles and especially his wife Hetty for the beautiful decorations, and the time they spent setting them up and taking them down. Thanks also to Gregg Holman for collecting contributions at the door; and to our newsletter editor, Lora Steed, for designing and mailing the invitations -- and bringing the birthday cake!

ONE LAPPERs On the Move -- Mike & Pilar Garrett and Linda Cheatham are in midst of preparations for the 1996 One Lap of America. They will be covering 4,300 miles, 21 states, 11 race tracks and multiple Hooters restaurants in 6 days to promote organ donation. They sleep, eat and drink on the fly -- there are no planned overnight stops, although each day has from 2 hours to 7 hours of "free time" when they can grab 40 winks. The schedule is as follows:

Join us at any of the locations (especially Summit Point -- only 60 miles West of DC) to see us race. If you have any media contacts, get them out to see the TRIO teams in their race coveralls with the TRIO logo on the back. If you know of anyone who would like to be a corporate sponsor ($1,000 or more) or make a donation, contact Linda Cheatham at 703-698-0083 or Mike Garrett at 703-931-3000. P.S. BRING FOOD!

1996 TRIO ANNUAL CONFERENCE

The 1996 TRIO Annual Conference is scheduled for September 25-28, 1996 in Nashville, TN at Opryland Hotel. Committee meetings and the Board of Directors meeting are September 25. The Conference Committee Co-Chairs, Ed Linz and Pat Sammons, will provide future details as they become available.

COMMUNITY EDUCATION FOR MAY 1996

Call Ivelisse Fontanez, WRTC, at 703-641-0100, if you are interested in attending any of these events.

Brian Rothermel, heart, Fairfax Hospital, '94
Krista Imhoff, kidney/pancreas, Washington Hospital Center, '93
Lawrence DeLuca, kidney, Washington Hospital Center, '92
Douglas Norland, Kidney, Washington Hospital Center, '87
Larry Slagle, heart, George Washington Medical Center, '95
Daryl Hollis, kidney, Hershey (PA) Medical Center, '92
Russell Queen, kidney, Washington Hospital Center, '93

If we missed your anniversary, please contact Claude Brady at 703-534-7029.

LUNCH BUNCH -- Wednesday, May 15th -- Columbia, MD To be more convenient to our friends of TRIO in Central Maryland the Lunch Bunch will be at Fresh Choice Restaurant, 10215 Wincopin Circle, across from the Mall in Columbia, MD at 12:00 noon on May 15th. We extend an invitation to all candidates, recipients, and anyone who has an interest in organ transplantation to join us. For more information call Claude Brady at 703-534-7029.

Tribute Cards -- Cherry Whitney purchased two packets of cards and Al & Jane Leon sent get well card for Debbie Hawkins. If you are interested in sending a tribute card or purchasing a packet of cards, call Jane Leon at 301-299-6748.

This newsletter posted on TransWeb by permission of Lora Steed of TRIO. Many thanks to Lora for formatting this page in HTML!

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Last modified: 11 May 2000