Last modified: 11 May 2000
Details are a little sketchy on the second recipient. Patrick Scarpa called to report that his daughter had gotten her transplant, but was so excited (understandably) he didn't leave any details. Call us back, Patrick, and fill us in.
In addition to the announced program, Paul Pearsall, PhD, will be one of the keynote speakers. Dr. Pearsall is a licensed clinical and educational psychologist specializing in the study of the interactions between the mind, body, immune, and social systems. Dr. Pearsall's personal struggle with cancer and eventual cure through a bone marrow transplant make his presentation particularly fitting for us.
Another special event not outlined in the program is the Tree of Life ceremony, which will be part of the Celebration of Life Banquet on Saturday night. During this ceremony, recipients will have an opportunity to hang a momento in honor of donor families on the Tree of Life. Lisa Kory recommends, ``A special photo, favorite poem, or simple ornament with a meaningful design,'' as appropriate ways to remember donors and donor families. TRIO members who have attended past conventions and annual meetings found this ceremony to be one of the highlights. If you are unable to attend the entire conference, consider signing up for Saturday, which includes two morning seminars (``Recipient and Family Issues'' and ``Achieving Happiness, Healing, Hope''), the annual business meeting in the afternoon, and the banquet that night (all for the bargain price of $50).
It's not too late to register! Call TRIO headquarters at 1-800-TRIO-386.
We extend our deepest sympathy to her family and friends.
v The support group he co-founded, Organ Transplants of Southwest Michigan, is determined to complete his work, and they are now asking us to direct our efforts toward Washington. While they will still accept petition signatures, their goal is to get supporters to blitz D.C. with letters, faxes, E-mail, telegrams . . . it's your choice. Write to The Citizen's Stamp Committee, your U.S. Senators and Representatives (with a request for their support with the Stamp Committee), the House Subcommittee on Postal Services, and anyone else who can help.
Here are some addresses to get you started:
Ms. Cindy TackettOther addresses, as well as sample letters, are available from the TRIO office or from Mary Pierce, Organ Transplants of Southwest Michigan, 1356 Linden Drive, St. Joseph, MI 49085.
Citizen's Stamp Advisory Committee
Room 4474 E. L'Enfant Plaza SW
Washington, DC 20260-2437
FAX: 202-268-2714
House Subcommittee on the Postal Service
Room B-349B, Rayburn House Office Building
Washington, D.C. 20510
Phone: 202-225-3741
Take it easy for a while, guys, then come out swinging.
Now let's take a look at August's anniversary list (and hope that we get it right this time).
Senior honors go to Jacqueline Dufresne, who received a kidney transplant nineteen years ago at Brigham and Women's Hospital.
Michael O'Rourke is celebrating his seventh transplant anniversary (liver, NEDH), while Carl Mattson hit that momentous 5-year mark (lung, B&W). Peter Jackson (liver, NEDH), Dorothy Lourie (kidney, BI), and Yvonne Zinfon (liver, NEDH) are all celebrating 4-year anniversaries.
Paul Ouellette (liver, NEDH) and Theresa Strickland (kidney, B&W) hit the 3-year mark. Mark Lebeaux had his transplant (kidney, BU Medical Center) two years ago this month.
And special anniversary wishes go to this year's freshman crop. Ken Lohse (heart, B&W); Joan Goodrich (liver, NEDH); John Murray (kidney, MGH); Barbara Noun (liver, Mayo Clinic); and Stuart Johnsrud (kidney, U. of Iowa Hospital) are all celebrating their first anniversary.
Best wishes and good health to all of you!
* Travel Alert!! A travel company which books cruises for dialysis patients called ``Journeys on Dialysis,'' operated by George Muir, has been running a scam. Apparently, Mr. Muir has taken customers' money but has never delivered on either the cruise or the dialysis treatments. It is our understanding that ``Journeys on Dialysis'' is currently being investigated by the FBI. If you are considering taking a cruise or using the services of a travel company, please research the integrity of the company thoroughly!!
* Doctor's handwriting is like the weather: everyone complains about it but no one ever does anything about it. Two years ago, though, a hospital in Detroit established a handwriting legibility committee to police its scrawling MD's. Since its inception, the committee has cited eight offenders, who have received reprimands and have cleaned up their penmanship. Hope it catches on across the country.
* The National Family Caregivers Association (NFCA) tells us that:
The aims of HFCA are research; information and education; support and validation; respite care and advocacy. For more information, you can contact them at 9621 East Bexhill Drive, Kensington, MD 20895-3104. (Phone: 301-942-6430).
* Transplant trends, as reported in the July issue of American Health:
If you are interested in competing or helping to raise funds for the team, the first step is to get on their mailing list. Remember, although sponsored by the NKF, the Olympics are open to recipients of all types of organs. Contact Julie Clinton, Team Coordinator, at 617-326-7225, for more information about participating.
Many of you long-time members have received TRIO t-shirts at various chapter events. I got my first shirt last summer at the TRIO picnic, and immediately put it on with pride! Other members did the same. It felt good to look around and see so many people in green, all joined by a common bond.
TRIO events and meetings are great places to wear those ``transplant t's,'' but sporting those slogans out in public is a great way to increase donor awareness. Of course, you have to be prepared to answer some questions from your t-shirt audience, but that's what it's all about . . . educating the masses! On the days when I have chosen to become a walking billboard for organ donor awareness, most of the comments I have received have been short and positive, such as, ``Great t-shirt!'' Of course, some people have asked about my transplant, what did I think about Mickey Mantle and other celebs, etc. But I used those moments to counter the sensationalized messages the press has been sending out, to dispel the fears and the myths about organ donation, and to impress people with the critical need to discuss this issue with family and friends.
As TRIO members, it is our mission to bring the story of the gift of life into the everyday world, and to demystify transplantation for our fellow citizens. By simply wearing a t-shirt on a day when you don't mind answering some questions, you can accomplish this, as many of you probably already know. Most people will not be bold enough to ask questions, but at least you are getting the words and messages out into common vocabulary.
At TRIO New England, we are looking for some new and catchy ideas for t-shirt slogans. So far, we have seen:
Please contact me, Suzi Holmes, at 617-894-3221, or Martin Smith at the TRIO office to let us know which slogans are your favorites, and to share any new ones that you have seen or composed. Who knows . . . your idea might end up on the next batch of shirts! And in the meantime, sport those slogans with pride!
The TRIO New England office has purchased copies of this brochure, which are available free to members. Copies can also be ordered through the National Kidney Foundation of the National Capital Area, 5335 Wisconsin Ave, SW, Suite 830, Washington, DC 20015 (Phone: 202-244-7900). Single copies are free; for quantity orders, the charge is $0.30 each.
* Speaking of fundraisers, are you still collecting those pennies? Treasurer John Cederstrom is waiting for them, and corny as it sounds, ``every penny counts!'' This fundraiser, which is one in which every member can participate, has generated almost $900 for the chapter, money which is used to help defray operating costs, such as the phone bill and postage.
* Signed up to help at the NEOB/NEOPO booth at the Big E yet? This fair runs from September 25 through October 1 from 10 a.m. to 10 p.m, but you only need to commit to a few hours. Call either organ bank to volunteer. (And if you can't make it to the Big E, what are you doing on November 1 from 11:30 to 2:30? NEOB could use some help staffing a health fair at Liberty Mutual in Boston.)
* Did you forget? We're still waiting for renewal notices from a lot of you. Remember, if the dues is a hardship, don't worry about it, but we do need to hear from you. So fill out the membership renewal NOW!
* In last month's newsletter, we mentioned we wanted to honor a member's request for more good news. Well, two new transplants is certainly good news. But what else are you up to? Been on any fun vacations? Had a wedding in the family? Starting a new job or school? Let us know, so we can share your good fortune and perhaps encourage someone who needs to know that things can get better.
* ORGANized is on the Internet! Yup, we've gotten very high-tech. You surfers out there who explore the World-Wide Web on a regular basis can find us at: HTP:\\WWW.MED.MUICH.EDU:80\TRANS\TRANSWEB\SUPPORT\ TRIO_NEW_ENG.HTML
And our E-mail address is BYGI31A@ PRODIGY.COM.
September 28. Discrimination in the Workplace. Daniel Bates, Esq. will talk about employment rights for transplant recipients and discuss the impact of the ADA on employment status and opportunities.
October 26. Social Security Administration. Francine Kollias of SSA will discuss Medicare coverage, how to get it, and how to get off it.
September 7-9. TRIO International Conference, Boston Park Plaza Hotel. (Details in future newsletters.)
September 14. Tribute to Jess Cain. Boston Park Plaza Hotel.
September 30. Transplantation Seminar sponsored by the National Kidney Foundation. Rhode Island Hospital. (For more information, contact Joe Hearn, NKF, at 617-326-7225.)
Martin Smith
TRIO New England
172 Boston Street
Middleton, MA 01949
Phone: 508-777-6050
Fax: 508-777-0620
email: BYGJ31A@prodigy.com