ORGANized

Vol. 5, No. 3, March 1996 . . . A publication of the New England chapter of TRIO

A new home

Get out the address books and rolodexes, turn to the TRIO entry, and make a note of our chapter's new address, phone, & fax number:

TRIO New England
Lakeside Office Park
607 North Ave, Door 14
Wakefield, MA 01880
Phone: 617-224-1270
Fax: 617-224-1929

Next, look around your home or office. See any extra furniture? We could use bookcases, chairs, tables, desks, file cabinets, a coat rack--almost anything you can think of. And what the heck--it can't hurt to ask: got an extra 486 or Pentium computer kicking around?

Finally, pull out your calendars and appointment books and figure out when you can spare some time to work in the office. If our chapter is to continue to grow and be successful, we need your help in answering the phones, filing, mailing out information, etc. Weekdays, evenings, week-ends--whatever works for you will work for us.

Of course, you're all invited to the new office for a tour. (We couldn't do that before.) Just call in advance to be sure someone is there to greet you.

In memoriam

It is with great sadness that we report the recent death of Katherine Kelleher. Katherine, a resident of Lincoln, MA, was waiting for a kidney transplant.

We extend our deepest sympathy to her family and friends.

Star Share to TRIO NE

by Suzi Holmes

On April 16-18 and April 23-25, Star Market has agreed to permit TRIO New England to participate in a program that offers us a 5 percent cash return on the amount that our members, relatives, and friends spend at all Star Markets. As we all know, all non-profit organizations can only benefit from any fundraising efforts that are made, and TRIO New England is no exception!

Attached to this newsletter you will find a flyer with coupons on it. These coupons are to be turned in along with the shopper's purchase on the specified dates to help us earn our 5%. Please photocopy the flyer and distribute copies to as many people as possible in your neighborhood, at your place of worship, at work, at a local school or library, or any other location where you could reach a large group of people. PLEASE NOTE: The only place where we cannot distribute these coupons is on Star Market property as it may result in cancellation of the program for us.

If you'd like to personalize the flyer with a handwritten note from you before you photocopy it, please go ahead. April 21-27 is National Organ and Tissue Donor Awareness Week, and by handing out these flyers we can spread the word about the miraculous Gift of Life and raise funds for TRIO NE at the same time.

Thanks for any efforts you make towards these goals!

10 Ways to Celebrate

April 21-27 is National Organ and Tissue Donor Awareness Week (NOTDAW). Every TRIO member should plan to participate in some way. Here are some ideas-- but be creative. There are plenty of things you can do to help educate those you come into contact with every day.

Sign up in the office to participate in one of the many events scheduled for that week As always, we will be manning booths at some transplant centers as well as at several health fairs.
Write to your local newspaper and let them know about NOTDAW. Maybe they'll do a human interest story about you, which is a great way to let the public know how well transplantation works.
Contact area churches and synagogues and ask them to use their pulpits to explain the church's position on organ donation. Many people mistakenly believe that organ donation is against their religion. This is a good way to correct that.
Work with the local library to put together a display and information sheet listing books about organ donation.
Distribute organ donor cards: at work, through local businesses, by mailing them to friends.
Wear your green ribbon or any other pin or t-shirt that is likely to catch people's eyes and start a conversation about organ donation.
Contact your local cable TV station and have it list the event in their calendars. As with local newspapers, cable TV stations are often looking for human interest stories, so you may even get to be a TV star.
If you are one of the many who travel the information superhighway, be sure let your fellow travelers know the importance of organ donation--and where they can get more information.
Contact local civic organizations (Rotary, Lion's Club, etc.) and offer to speak at one of their meetings.
Gather signatures for the organ donor awareness stamp campaign. This campaign has been going on for years, and its organizers have no intention of stopping until the stamp is published. And getting signatures is a great way to start a conversation about organ donation.

If you need donor cards, stamp petitions, or some current facts and figures about organ donation, contact the office. (The New England Organ Bank is also a valuable source of information about organ donation. You can reach them at 617-244-8000.)

Fore!

Spring is in the air and we hear the golfers are already out on the Cape. Certainly on the nicer days recently, the driving ranges we've passed by have shown signs of life. And after this winter, who can find fault with the desire to get out in the fresh air, stretch a little, and have some fun?

With that lead-in, TRIO New England is pleased to announce the first annual TRIO Golf Classic, which will be held at the beautiful South Shore Country Club in Hingham, MA on June 17, 1996.

This event is being organized by Ken Leary, with the support of several other TRIO members. Ken, a heart recipient, has organized several similar events in the past, and we are lucky to have his expertise at work for TRIO.

Right now, we are looking for corporate sponsors as well as general donations. There are several categories of sponsorship available, ranging in price from $125 to $1500. If you know of a corporation that might be interested in supporting this event, or if you or someone you know might be interested in playing in the tournament, call the office or the tournament director, Ken Leary, at 617-740-1890.

You'll be hearing more about this event later--and you can bet we'll be asking for volunteers on that day, so keep it open.

Member news

It's a boy! Kenna and Joe Sullivan are the proud parents of Sean Joseph Sullivan, born March 23. Weighing in at 7 lb 2 oz, Joseph is doing fine, and he and mother are home getting ready for NOTDAW.
Last month we reported that Karen Couture received a double-lung transplant at Shands Hospital in Jacksonsville, Florida. This month we are happy to report that Karen is continuing to do well and is planning on returning to New England sometime this spring.
Winter didn't end soon enough for Jim Tynan. In early March, he was out walking the dog when he took a spill on the ice. He was OK until he got up and continued his walk. The second fall left him with a broken arm. The third fall, fortunately, only hurt his dignity. We bet next winter will find the Tynans in warmer climes.

Living Donor Recognition Ceremony

New England's first living donor recognition ceremony was held on March 10. Living donors are a special group of people because they put themselves at personal risk to save the life of someone they love: child, parent, sibling, spouse, or even a friend. Most living donors have sacrificed one of their two kidneys to a relative in desperate need. A very small number have donated a piece of their liver or a part of their lung to save the life of a loved one.

It is no surprise that the National Kidney Foundation of Massachusetts and Rhode Island, the Kidney Transplant/Dialysis Association, Inc. (KT/DA), and TRIO New England felt it was important to honor these donors for their selfless gifts of life and love.

Over 400 transplant recipients and their living donors attended the ceremony. Following opening remarks by a member of each of the three sponsoring organizations, Mary Chapman (donor mother), Peter Cappuccilli (kidney recipient), and Valerie Epps (donor wife) told their stories to a rapt audience. Then each donor was called to the front of the room to be recognized.

Congratulations to the planning committee members for a job well done. It takes a lot of effort, which is usually accompanied by a fair amount of stress, to plan an event like this. George Arena, Richard Faber, Jeanne Quinn, Kenna Sullivan, and Elizabeth Weisberg were the forces that put this successful ceremony together.

News briefs

The American Liver Foundation has named April "Liver Awareness Month," and the New England chapter has an aggressive schedule of events planned. In addition to several educational/support functions, the chapter has set up walk-in information and screening sessions at several New England hospitals. For information, call them at 617-527-5600.
Planning on running or walking in the 100th Boston Marathon? TRIO New England has sponsor sheets available for those members (or friends) who are athletically inclined and interested in raising money for TRIO. Those not so athletic but interested in the event and supporting TRIO can help by working in Hopkinton to distribute organ donor cards and related literature.
A recent letter from the president of the Southwestern Michigan chapter of TRIO announced their continuing efforts to make the Gift of Life stamp a reality. Their efforts are 2-fold: signatures on the now-familiar petition, and a writing campaign. They encourage supporters to write to senators, congressmen, and to the Citizens' Stamp Advisory Committee. Call the office for details.
Last month, Marcia and David Bujan offered to host a brain-storming session in their home for those interested in working on fundraising ideas for the chapter. They didn't get a very good response, since their phone number was wrong. The correct number is 508-685-2986.

Milestones

March brings twelve transplant anniversaries. Senior award goes to Louis Sargentelli, Jr., who is celebrating his tenth transplant anniversary (heart, Presbyterian University Hospital, Pittsburgh). Malcolm Campbell is celebrating his sixth anniversary (heart, B&W). Susan Drapeau (kidney, UMMC), Therese Fauvel (liver, NEDH), and Ann Kathryn Fleury (liver, Presbyterian University Hospital, Pittsburgh) are all celebrating 5-year anniversaries. Lorraine Stephens and Thomas Killoren are celebrating the third anniversaries of their liver transplants, both of which took place at the Deaconess.

The 2-year mark has been reached by Alan Alpert (kidney-pancreas, BI) and Jacques Carlier (heart, MGH), while the all-important first-year milestone is here for Anne Holland (liver, Mt. Sinai, NY), Gladys Marks (heart, B&W), and John Mulcahy (liver, NEMC).

Best wishes for a happy, healthy spring to all of you.

Xenotransplants

David H. Sachs, M.D., Director of the Transplantation Biology Research Center at Massachusetts General Hospital and Professor of Surgery at Harvard Medical School, was the speaker at the February educational/support meeting.

His topic was xenotransplants--transplants between members of different species (for example, between a baboon and a pig).

Research in the field of xenotransplantation has taken on new importance as the number of available human organs remains level while the number of potential recipients continues to grow.

According to Dr. Sachs, two animals being closely evaluated as potential sources for organs for human transplants are the baboon and the pig. The obvious advantage of the baboon is its phylogenetic (or evolutionary) closeness to humans. Its disadvantages include size (baboons are much smaller) and availability.

Pigs, on the other hand, are readily available and about the right size. The disadvantages of pigs as a source of organs are their phylogenetic distance, natural antibodies, and incompatible growth factors. Scientists are working to develop a transgenetic pig which will solve some of these problems.

Aside from the obvious scientific challenges facing researchers in this field, Dr. Sachs introduced two other obstacles. One is the animal rights activists, who have the support of many celebrities, who in turn have a great deal of influence over public opinion. The second is funding. Research is expensive, and as budget cuts rule the land, it becomes increasingly difficult to get the grants needed to staff labs.

While we can't do much to further the scientific efforts, we can do a lot to help explain "the other side" of the animal rights issues to the public and to our government representatives. Not only is this research important for its eventual impact on the organ donor shortage, its potential for providing new knowledge about the immunosuppressant system is very high; such knowledge could lead to improvements in all sorts of medical procedures, from transplants (the human to human kind we now have) to AIDS treatments.

As we have so many times before, we urge you to get involved. Be alert for opportunities to explain the importance of the research; pick up your phones or pens and let your legislators know how you feel. We can make a difference!

News from Maine

Despite the lousy weather forecast of snow and sleet, 12 hard-core members showed up at the March meeting to hear Daniel Bates, Esq. speak on employment rights. The talk was interesting and we learned of the New England Disability and Business Technical Center which is in charge of writing and administering guidelines for employers under the Americans with Disabilities Act. It appears that there are, as yet, no details covering transplants. We plan to suggest that they address this issue.

The next meeting is scheduled for Wednesday, April 3. The subject will be State of Maine employment retraining programs. This should be an interesting topic and we hope to have a big turnout.

News from Rhode Island

The first meeting in the Rhode Island area is scheduled for April 10 at 7:00 p.m. It will be held in Potter Room B at the South County Hospital in Wakefield, RI.

To reach the hospital from the Providence area, stay on Rte 95 South to Rte 4 South to Rte 1 South. Follow the signs to South County Hospital from Rte 1.

For further information, call Florence Browning at 401-539-7606.

News from Vermont

Members Nancy and Joe Bell are trying to organize monthly meetings in the Burlington, VT area. If you are interested, please contact them at 802-524-7318.

News from New Hampshire

The Transplant Games are coming and Team New Hampshire is looking for members and supporters.

The Games, which will be held August 22-25 in Salt Lake City, are expected to be the largest yet, with over 1500 athletes participating.

The Games are open to anyone who has received an organ transplant. Competitions include swimming, tennis, golf, basketball, cycling, and badminton. There will also be plenty of social activities and special events.

If you are interested in joining Team New Hampshire, contact Robb Fuller at 603-650-5000 or the NH office of the National Kidney Foundation at 603-224-6641.

(If you are interested in joining Team Massachusetts and Rhode Island, contact Julie Clinton, team coordinator, at 617-326-7225.)

Upcoming events

An educational/support series is presented at 7:30 p.m. at the Lahey Clinic in Burlington, MA. (Check at the front desk for meeting room.)

April 25. Managed Health Care. Joseph Reedy, R.N., Clinical Nurse Consultant for John Hancock Mutual Life Insurance Co., will discuss their national transplant program.

May 23. NorthEast Organ Procurement Organization. Maria Sadlowski, transplant coordinator for Baystate Medical Center, will talk about ways TRIO members can help OPOs educate the public and advocate for transplantation.

OTHER MEETINGS

In addition to the educational/support series held at the Lahey Clinic, TRIO New England sponsors meetings at the following locations:

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.
Maine Medical Center, Portland, Maine. 7:00 p.m. on the first Wednesday of each month in the Dana Education Center. For more information, contact the office.
South County Hospital, Wakefield, RI. 7:00 p.m., April 10 (see "News from Rhode Island" for more info)

OTHER EVENTS

April 21-27. National Organ and Tissue Donor Awareness Week.

More information

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

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

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