ORGANized

Vol. 6, No. 5, May 1997 . . . A publication of the New England chapter of TRIO

TRIO members rose to the challenge of promoting National Organ and Tissue Donor Awareness Week (NOTDAW). Many of you used suggestions we made, others came up with some unique ideas of their own. We'll report on a few activities in this issue, and fill in some more next month. (It's not too late for you to let us know how you helped spread the word.)

Kudos to Kenna Sullivan of the New England Organ Bank (NEOB) for her extraordinary work in coordinating the efforts of TRIO volunteers as well as NEOB volunteers.

NOTDAW is a real call to arms for all members of TRIO, but we all know that the work to increase awareness is a year-round task. In this issue of ORGANized, as well as future issues, you will find a section entitled "How to Make a Difference." This section will give you step-by-step procedures for carrying out some awareness-promoting ideas. The procedures have been developed by some members who have used them successfully, and they will take the mystery out of it for novices.

You will also find one or two homework assignments scattered around the newsletter. Distance and illness makes it difficult for many of our members to participate in some chapter activities, but there are still many ways you can help. Read on...

Take note!

These meetings will take place at 7:30 p.m., Lahey Clinic, Burlington, MA, and are open to members and non-members.

May 22 Owen Surman, M.D., psychiatrist at Massachusetts General Hospital, will discuss the psychological impact of transplantation on patients and families. This is a subject many members have asked us to address, and a meeting we are sure you don't want to miss.

June 26 Gilbert H. Mudge, Jr., M.D., cardiologist at Brigham and Women's Hospital, will talk about the heart transplant process, from evaluation through surgery and on to recovery.

Tree of Life

In celebration of National Organ and Tissue Donor Awareness Week (NOTDAW), Hillside Florists of Woburn, MA, donated a "Tree of Life" to TRIO New England. It is a braided ficus tree, which is the logo for TRIO and a perfect representation of transplantation. Branches are grafted onto a host tree and then intertwined. The new branches become a part of the whole tree, and together they flourish. The tree is a living memorial to those who have given others the gift of life. It also honors those who died awaiting their second chance.

The "Tree of Life" tree was first presented at the April chapter meeting. The presentation was made by Marianne DeCelles and her two daughters, Sarah and Amy. Marianne's husband, Steve, died of complications shortly after receiving a transplant; she continues to support TRIO and work for organ donation. Dick Ficociello, lung recipient, accepted the tree on behalf of TRIO New England. Also on hand were the chapter offi-cers, several other recipients and family members, and Kenna Sullivan, representing the New England Organ Bank.

The tree has now started a 7-month New England tour. It will be taken to libraries, health fairs, and public events as a symbol of how organ transplantation can save and enhance lives. Its first stop was the Woburn Public Library, where it was incorporated into a ceremony proclaiming April 20-26 Organ Awareness Week in Woburn. Attending that ceremony were Woburn mayor Robert Dever and state rep. Carol Donovan.

Since then, it has been to the Tewksbury Public Library, the Billerica Public Library, and Billerica Town Meeting. Plans are underway to bring the tree to the Chelmsford Public Library in the upcoming weeks.

When the tour ends in December, the tree and a plaque dedicated to organ donors will be placed on display in the lobby of the New England Organ Bank. Meanwhile, want to schedule an appearance in your town? No problem. Just call Dick Ficociello, project chairman, at 617-932-8004.

In memoriam

It is with great sadness that we report the death of long-time member Michael O'Rourke. Michael, a liver recipient, received his transplant almost nine years ago.

In addition to being an involved TRIO member, Michael was also very active in the Massachusetts 40+8 and was past commander of JFK Memorial Post #17.

We send our deepest sympathy to his family and friends.

The Cheshire Cat . . .

I was driving along highway 128 the other day when I saw a bumper sticker with the slogan "Have you hugged your kid today?" This brought back a string of memories, until I visualized myself in a nursing class 25 years ago. The topic was geriatric nursing. A new concept at that time was the value of making a client feel loved and accepted as a nursing treatment. The scientific community was studying the value of human contact with the well-being of the elderly client. It was slowly concluding that physical contact was paramount in the mental well-being of individuals of any age.

As I matured and became a mother, I realized the value of hugs for my children. The unconditional love of a parent to a child seemed to work miracles, and hugs were a top priority in our family.

Today, I actively seek out individuals who hug and like to be hugged. Those little endorphines that make me feel good are stimulated and I have a happy smile for all.

A cartoon in the Sunday paper listed all the benefits of a hug:

Relieves tension
Improves blood flow
Reduces stress
Non-polluting
Generates goodwill
No batteries required
Absolutely no cost
Non-taxable
Silent performance
Extremely personal
Fully returnable

Is hugging a part of your life? If not, why not consider it?

Member news

Ron Fhalback (hope we got that spelling right), kidney recipient, is the newest member of the volunteer staff in the Wakefield office. He joins Bob and Kathy Coyne, Gordon Estes, Sally Johnson, Sandy McNaughton, Marty Smith, and Patricia Sutcliffe.
Jim Brown, Maine resident, recently started a new job in Boston. Since he'll be in the area, we might see him at meetings once again. Congratulations, Jim, and best wishes for a great future in your new endeavor.
We want to acknowledge the efforts of the following members during NOTDAW: Barbara and Jim Tynan, Tom and Linda Fall, Gladys and Joe Marks, Christine Murch, Henry Tobyne, Kim Sedi, Robin Silverman, Michele Veilleux, Vinnie and John Kalishes, Carolyn Fiore, Sandy McNaughton, Marty Smith, Dick Ficociello, and Kenna Sullivan. We know this list is far from complete, and we plan to have a more thorough account of your activities in an upcoming issue. (One sure way to get your story included is to drop us a line.)
There is a very active TRIO group in Vermont, organized by Nancy and Joseph Bell. The group was recently the subject of an extensive article in Legacies, the newsletter of the New Hampshire and Vermont offices of the New England Organ Bank. Great publicity for their efforts, and it is sure to lead to increased membership as more professionals learn about the work they are doing.
Richard Gilman, kidney recipient, is a financial planner who is trying to develop a financial counseling/seminar program. His idea is to help transplant candidates and recipients better manage their benefits, health insurance, and financial resources. If you or someone you know has expertise in taxes, health insurance, or legal/estate planning and would be interested in helping to build this program, please call Richard and leave a message at 508-777-6500, extension 22.

Milestones

As our membership continues to grow, so does the list of transplant anniversaries. Twenty-two members are celebrating this month. May's senior award goes to Mildred Rickson (liver, NEDH) who is celebrating the eleventh anniversary of her transplant. Next in line is Helen Seward (liver, NEDH) who is eight years post-transplant. Close on her heels are Martin Smith, Joseph Vozzella, and Paul Gentili (all liver recipients, NEDH) who have reached the 7-year milestone. Joseph Ferreira (heart, MGH) is the sole owner of the 6-year banner for this month. James Brown (liver, NEDH) and Linda Fall (heart, B&W) are at the 5-year mark, and Ralph Matson (heart, B&W), Karen Cuneo (kidney, DMC), and Richard Zelinski (kidney, MGH) are at the 4-year mark. It's a 3-year anniversary for Michael Forrestall, Jr. (kidney, NEDH), Joe Maloney (liver, NEDH), John Marino (lung, University of Minnesota Medical Center), and Robert McCarthy (liver, NEDH). Happy second anniversary to Ambria Bilotta (liver, MGH), David Cannavo (heart, B&W), and Jessie Dill (kidney, MMC).

This year's freshman crop, who are celebrating their first transplant anniversary, include Martinez McNeil (kidney, NEMC), Shawn Paul (liver, NEMC), Joseph Rousseau (kidney, B&W), and Beverly Tooley (liver, NEMC).

TRIO scholarships

As in the past, TRIO will be awarding several $1,000 scholarships to transplant candidates, recipients, and donor family members who qualify. The criteria are:

Applicant must be an organ/tissue candidate, recipient, or member of a donor family
Applicant must have a financial need.
Applicant must have a grade point average of 2.5 or better. (Letters of recommendation are necessary.)
Applicant should submit a statement of educational objectives and future life goals.
Scholarship award must be used for continuing education at an accredited college, university, trade/technical school certificate during 1997-98 academic year. (Applicant must provide a letter of acceptance or current transcript with application.)

Applications must be submitted by July 15, 1997 to the TRIO Scholarship Committee, 1000 16th St., NW, Washington, D.C. 20036-5705. Awards will be announced during the Annual TRIO conference.

Help! Help! Help!

It's springtime and the good news of transplantation is our charge. You are the eyes and ears of the community. We need to hear about festivals, town days, etc. Look in your papers, be creative and think about where a table could be placed to focus on public awareness of transplantation. Or is it your day to step up and run an event?

We will walk you through the procedure, provide all the materials, and find people to help you. Call the office and/or drop the clipping in the mail and we will take care of the rest. Help us make our spring-summer-fall calendar full! (Call Sandy or Marty in the office if you have any questions.)

TRIO scholarships II

The number of scholarships awarded each year varies, depending on the support the program receives from chapters and individuals. In addition to the scholarships provided by international, several chapters and members donate scholarships too.

The $1,000 amount is a little steep for most of us, but think about it. Perhaps you can organize a group to sponsor a scholarship in honor of or in memory of a special person. Maybe you can run a fundraiser specifically targeted at funding a scholarship. It's even possible you may be able to work with another chapter to co-sponsor a scholarship. (The scholarship committee will help you there.)

Wouldn't it be wonderful to award a scholarhip to everyone who applies?

How can I make a difference?

Many people want to make others aware of the desperate need for organ and tissue donation but don't know how. We have put together a program in which we spell out what to do step by step. Several of the projects were created by Laurie Biel of Wakefield. Laurie is a transplant nurse at Mass General but she is also a mother and homemaker. In other words, she is just like you. These ideas worked for her and they will work for you.

The easiest way to get something done is to just get started. Pick a project and begin. The first and easiest one is to get a story about yourself in the local paper. Follow the simple instructions in the next paragraph. When that works out, you will be eager to start another program!

The weekly shoppers are thrilled to run stories about local people like you. We have three sample press releases: an announcement you are on the waiting list, that the transplant has been done, and that you are celebrating an anniversary. All you have to do is fill in the blanks on the appropriate release and attach a page of background information (which we will also supply). Look in the paper or phone book for the address of your local paper and mail the two pages. After the story is published, send a copy to TRIO. Can't get much simpler than that!

News briefs

The New England Organ Bank and TRIO are again sponsoring a reception to honor donor families in Massachusetts and Rhode Island. In order to ensure that there is enough room to accommodate all the donor families who wish to attend, as well as their guests, organizers are forced to limit the number of recipients who are invited. (This is a downside of increased TRIO membership.) Names will be chosen at random from the list of TRIO recipients who live in Massachusetts and Rhode Island. We hope everyone who receives an invitation will be able to attend this moving ceremony.
Last month we told you about legislation introduced by Florida Representative Charles Canady to remove the time limit for immunosuppressive medication coverage under Medicare. This coverage, which applies only to kidney recipients, is currently limited to three years. Canady says he introduced the legislation because, "It simply does not make sense for the government to spend large amounts of taxpayer's money on dialysis and transplants, yet fail to follow through with coverage of the drugs necessary to ensure that the transplants are a success."
According to the April 29 issue of Transplant News, there are 16 co-sponsors of H.R. 1061. None of the 16 are from New England, so get out your pens or pick up your phones to let your representative know you want them to support this bill. (If you need to know how to contact your rep, call the office.)

Upcoming events

CHAPTER MEETINGS
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. (Note: March meeting will be held on 3rd Thursday.)
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.
TRIO Office, Wakefield, MA, 10:00 am-12:00 pm every Friday. (Call in advance!)
For more information about the above 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, VT, 7:00 p.m. on the second Thursday of the month. For more information, call Nancy or Joe Bell at 802-524-7318.
Central Vermont Hospital, Montpelier, VT, 7:00 p.m. on the first Thursday of the month. Call Ed Rhodes at 802-524-7318 for more information.
OTHER EVENTS
June 16. TRIO Golf Classic, South Shore Country Club
July 26. TRIO New England picnic. Two Lights State Park, Cape Elizabeth, ME
Sept. 29-Oct. 5. World Transplant Games, Sydney, Australia.

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

This text provided to TransWeb by Ruth I'Anson of TRIO. All rights reserved.
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Last modified: 11 May 2000