ORGANized

Vol. 6, No. 1, January 1997 . . . A publication of the New England chapter of TRIO

The year in review

January is a time for looking back as well as looking ahead. 1996 was another successful year for TRIO New England. One of the big events was our move from Marty Smith's home to an office in Wakefield. The office offers enormous advantages to the chapter: it makes it easier to use the skills of volunteers, provides a convenient meeting spot for officers and committees, and gives members ready access to the office resources, especially the library and phone as they search out the best transplant program for their needs.

Membership continued to grow; we currently have nearly 500 members from all over New England. Membership includes transplant patients, donor families, transplant professionals, and other interested parties.

We revised and reprinted the resource guide last year (which we continue to distribute without charge), continued to publish the monthly newsletter, established a sunshine committee (which honors transplant anniversaries and welcomes new members, as well as offering encouragement to sick members and congratulations to celebrating members), and kicked off a mentor program.

We started 1996 with three regular monthly meeting locations. By the end of 1996, thanks to the efforts of our members, we were sponsoring five (Burlington, MA; Boston, MA; Portland, ME; St. Albans, VT; and Wakefield, RI). Don't be surprised to see more by the end of 1997.

Among our special projects were co-sponsorship of two Organ Donor Recognition Ceremonies; a Thanksgiving project in which we wrote 450 thank you notes to donor families; and a golf tournament that raised not only awareness but also needed funds for TRIO.

Increasing donor awareness is an important part of TRIO's mission, and members put together some major public education campaigns this year, in which they reached out to their towns, their churches, their families, and their co-workers.

TRIO NE continued to be an advocate for transplant patients too, voicing our concerns about the establishment of a new transplant program in New England as well as the effect of proposed changes in the UNOS liver allocation policies. While we may not always be able to change policies, we try to ensure that policy makers hear and understand the patients' side of the story.

And 1996 was a year that we shared in the joy of some of our membersÄtransplants received, babies born, graduations, athletic achievements. . . We also shared our members' sorrow, as we mourned the deaths of loved ones.

What is ahead for 1997? TRIO NE plans to continue all of its current programs. Expansion depends largely on you. As a volunteer organization, we count on our members for both ideas and manpower. What do you say? Make 1997 the year you get involved! We can use your help.

Speaker training

Transplant patients (both recipients and candidates) and donor family members can be very effective educators. Who better to carry the message to the public about the need for and benefits of organ donation? TRIO New England and the New England Organ Bank are always looking for spokespeople at health fairs, civic meetings, etc. But perhaps you are reluctant because you don't feel know enough.

It is important that you be well-informed and prepared to accurately answer questions that come up. (There is enough misinformation and misunderstanding out there already!)

So the solution is here. The New England Organ Bank is holding a training session on Tuesday, January 28, in their Newton office. Once you have completed the training, you will have the confidence (and knowledge) you need to be an advocate for organ donation.

Any TRIO member interested in attending should contact Kenna Sullivan at 800-446-6362 as soon as possible. Registration is required!

Member news

The new year is having a rocky start for several of our members. Jeff Wise and John Cederstrom are on the sick list, and Michael O'Rourke and Frannie Cartier have had their share of ups and downs recently (although we hear Frannie is doing better now). Our thoughts and prayers are with you all.
Marcia Bujan (kidney/pancreas recipient), Jane Ostheimer (donor wife), and Betsey Strock (Educational Director of the NEOB) were recent guests on a local cable TV program called ``Around Town.'' The discussion focused on organ donation and was aired in Methuen, Lawrence, and No. Andover.
Stephen Siddle (heart recipient) and Shawn Paul (liver recipient), both students at Assumption College, were subjects of a recent article in the Worcester Telegram and Gazette. The prominent article, entitled "Transplants give the most precious gift: Life'' told the stories of two young men who can now plan for their futures thanks to life-saving organ transplants. Steve also participated in National Donor Sabbath by publishing a letter in his church's newsletter and inviting members of the congregation to meet with him on the 17th if they wanted to talk about his experience or organ donation in general.
Another young man's journey through the world of transplantation was the subject of a cover story in The Boston Globe Magazine recently. Spencer Bean is a 19-year-old double lung recipient whose donors were his mother and his aunt. This in-depth article, entitled "The Gift," describes how the family made the decision to become living donors, touches on some of the controversy that surrounds this type of transplant, and follows all three patients through the processÄfrom evaluation to successful surgery and recovery. Great reading for anyone interested in transplantation.
Congratulations to Lisa Amicone Stowell, who married her sweetheart last August. Lisa reports their marriage got off to a rocky start: they cruised to Bermuda through Hurricane Eduardo and came back during Hurricane Fran. Guess they are now prepared to weather anything life throws at them.

Milestones

We're starting the new year with a long list of transplant anniversaries, and some of them are real show-stoppers. For example, Holly White received a kidney transplant at Children's Hospital sixteen years ago this month! Randy Stafford is not too far behind: he had a kidney transplant thirteen years ago at University of California Hospital in San Francisco. Another major milestone is being celebrated by Constance Kelley who is celebrating the eleventh anniversary of her liver transplant (NEMC).

Other milestones include Florence Browning (kidney, NEDH) and Vincent Parrazzo (heart, B&W) who are both celebrating 7-year anniversaries. Close on their heels are Rosalie Katchen (liver, NEDH), Graig May (kidney, NEDH), and Janet Reardon (lung, MGH) who had their transplants six years ago. And Jennifer Searl (kidney, MGH), Lois Chauvin (liver, NEMC), Elizabeth Weisberg (kidney, Lahey), Gerald McCarthy (kidney, NEDH), Scott Frank (heart, Loyola Medical Center), and Shawn Strickland (heart, Children's) are all celebrating 4-year anniversaries.

Three-year honorees are Judith Bartlett (liver, NEDH), Edward Chapman (kidney, MGH), Rodney Eriksen (heart, MGH), and Cynthia Sheridan (kidney, NEDH). Marilyn Cabral (liver, NEMC), Elizabeth Cahill (heart, B&W), Paul Cox, M.D. (liver, NEMC), Neil Raymond (kidney, MMC), and Dan Schaffer (kidney, BI) have reach the two-year mark.

And this year's freshman crop includes Karen Couture (lung, Shands Hospital), Russell Fontaine (heart, B&W), Donna Penna (kidney, MGH), and Lee Pollock (kidney, Univ. of Miami).

As always, we extend our heartiest congratulations to all of you and best wishes for good health throughout the new year.

Marcia's corner

by Marcia Bujan

Did you know that 39% of Americans say the hardest thing in their lives is weight control? Another 32% say its their spending habits, 17% cite their fears, and 11% their anger.

Despite the popularity of frozen yogurt, Americans consumption of ice cream remains steady at 13.5 quarts per person per year.
Transplant Chronicles recently printed the following information about the donor awareness stamp: "although the donor awareness stamp did not receive approval for 1997, there is still hope it will be approved for 1998. Many members of congress have contacted the Citizens Stamp Advisory Committee via the Internet. To add your support on-line, contact TransWeb at http://www.transweb.org/donation-folder/stamp.htm or you can send a letter to Dr. Virginia Noelke, Citizens Stamp Advisory Committee, U.S. Postal Service, 475 L'Enfant Plaza, S.W., Room 4474 E. Washington, D.C. 20260-5437."
If they hear from enough of us enough times, their thinking may be changed and the stamp finally issued.

News briefs

The Pitching Pennies for TRIO campaign continues into 1997. This is an affordable way for everyone to contribute to the chapter's support, and get family and friends involved too. Since its inception, we have raised about $2000 this way, which went a long way in helping us pay for office supplies.
Pam Albert, Donor Family Coordinator for NEOB, reports that the response to TRIO's Thanksgiving cards was extremely positive. Thanks to all the members who worked on this project.
More news from Pam Albert. She is compiling a Donor Family Memory Book, which will contain contributions from donor families about their loved ones. Recipients are invited to participate by contributing a letter or poem as a way of thanking donor families. Send your contribution to Pam Albert, New England Organ Bank, 1 Gateway Center, Newton, MA 02158.
Marty Smith is considering starting a weekly "chat session" in the office from 10 a.m. to 12 p.m. on Fridays. These meetings would give attendees an opportunity to talk about their concerns in an informal setting. Interested? Call the office at 617-224-1270.
We hope you like the agenda of speakers that we are unveiling this month. We are fortunate to have such support from the professional community.

Upcoming events

TRIO/New England sponsors an educational/support series at the following locations:

Lahey Clinic, Burlington, MA, 7:30 p.m. on the 4th Thursday of the month (unless otherwise noted; see calendar of events)
Maine Medical Center, Portland, Maine, 7:00 p.m. on the first Wednesday of the month, in the Dana Education Center, Classroom 2, Maine Medical Center.
Note: For more information about the Maine and Burlington, MA, meetings, call the office.
Massachusetts General Hospital, 12:00 noon on the second Sunday of each month in the Walcott Room of the Wang Ambulatory Care Center. For more information, call Joe Ferreira at 617-491-0819.
South County Hospital, Wakefield, RI, 7:00 p.m. on the second Wednesday of the month. For more information, call Florence Browning at 401-539-7606.
Northwest Medical Center, St. Albans, Vermont, 7:00 p.m. on the second Thursday of the month. Call Nancy or Joe Bell at 802-524-7318.

Other Events
January 28. Speakers Training. New England Organ Bank. (See related article on page 1.)

February 5. "Liver Transplantation: What's Involved." Sponsored by American Liver Foundation, this seminar will be conducted by Roger Jenkins, M.D., Deaconess Hospital. Sheraton Tara Hotel, Newton, MA 7:00 p.m. For more information, call 617-527-5600.

More information

If you want more information about TRIO (Transplant Recipients International Organization), contact:

Martin Smith
TRIO New England
Lakeside Office Park
607 North Avenue, Door 14
Wakefield, MA 01880
Phone: 617-224-1270
Fax: 617-224-1929
email: BYGJ31A@prodigy.com

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Last modified: 11 May 2000