Transplant Recipients and Food Safety- at LITRIO.org

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What's New In Transplantation?

Please join us at our general membership meeting on March 10, 2010 at 7:30 PM with our special guest speaker Jorge Ortiz M.D., Chief of Liver Transplantation at Albert Einstein Medical Center.

Dr. Ortiz is a vibrant speaker who is both a kidney transplant surgeon and liver transplant surgeon and he will be discussing : "What's New In Transplantation?"

Our meeting begins at 7:30 PM and is held at
145 Community Dr., Manhasset, NY.
We'll see you next Wednesday evening, March 10, 2010 at 7:30 PM at 145 Community Dr., Manhasset, NY.

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Our friend and Long Island TRIO member Mack Steinbock has received the Gift Of Life
March 2010: Snowstorm liver transplant is a miracle for Long Island woman

Thank you for joining us at our LI TRIO Annual Holiday Party- Friday evening, December 4, 2009

LA Daily News: “Three Rivers” by Tenaya Wallace

“The Sunday night program was pulled from schedules, effective immediately, but CBS said it would complete production of its initial 13 episodes.”-CBS

“Can a single TV show actually save lives? "Three Rivers," a CBS prime-time series on donation and transplantation, did. Sadly, that remarkable fact was not enough to save itself. As the donation and transplantation community mourns the premature shelving of "Three Rivers," we stand in awe of its achievements.

A month ago, a San Antonio, Texas, family donated the corneas of a loved one who had passed away. They consented because they wanted their family member to help others. Two weeks later, a family on the East Coast donated the organs of their teenage daughter because she had talked to them about donation after watching "Three Rivers" on a Sunday night. On Thanksgiving weekend, a daughter in Louisiana gave consent for her mother to save three lives. She too was a fan of "Three Rivers," and the coordinator was impressed by how much the family knew about the donation process from watching the show. For years, inaccurate and horrific scenarios about black markets and stolen organs made us initiate letter-writing campaigns; even worse, research showed it kept viewers from signing up to be donors. Finally, one show got it right. "Three Rivers" viewers got something extra with their nightly fare of drama: They had a chance to learn the truth about donation and were challenged to talk about a topic families rarely wish to discuss - death and their wishes at end of life.”

Drug side effects a key factor in reduced quality of life for kidney transplant recipients

Hey
I'm really proud of this article and wanted to share it with you. This is the first time where I think something I did can really make a difference in someone's life. Enjoy and let me know what you think! - Love, Sam
Samantha Shepard-Morning News

Please Visit the Stephanie Joyce Kahn Foundation

Earlier May Not Be Better For Preemptive Kidney Transplants

David S. Ware, who learned his craft at the knee of Sonny Rollins performed live after receiving The Gift Of Life from a friend!

H1N1 Flu Challenges Heart and Lung Transplants

First living donor liver recipient at conference
Twenty years ago University of Chicago doctors performed the world's first successful living-donor liver transplant

Meeting at 7:30 PM, Wednesday- October 14, 2009 with our special guest speaker Dina Grgas. Dina is a Nutritionist and a vibrant and skilled speaker who is also a transplant recipient.

Dina is a wonderful person and experienced nutritionist who was an enjoyable guest speaker at our LI TRIO meeting.Additionally, I was able to obtain $100.00 vouchers/cards for the credit of $100.00 ($100 per month for 12 months) toward the co-pay of cellcept medication. Certain restrictions apply of course (Government plans et. al.) and Tom has volunteered to help distribute these cards at our meetings and via USPS..

H1N1 vaccines are currently available. Please speak to your physician and seek advice with regard to this important issue.

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Our General Meetings are held on the second Wednesday of each month from September to June. Our holiday party in December substitutes for the December meeting. The meetings begin at 7:30 PM and are held at
145 Community Dr., Manhasset, NY.
We'll see you next Wednesday evening, March 10, 2010 at 7:30 PM at 145 Community Dr., Manhasset, NY.
Thank you

Long Island TRIO honored Donors and Donor Families at our LI TRIO Donor Rose Garden in our deeded area of Eisenhower Park on Long Island in New York.
LI TRIO also honored one donor in particular who donated one of her kidneys to her student, who is a member of Long Island TRIO.
At the ceremony, Long island TRIO arranged for Sentator Kemp Hannon to present one of New York State's highest awards, "The Liberty Award" to Jennifer Jennifer Mazzotta-Perretti, a teacher, who is also the special education director at the Hebrew Academy of the Five Towns & Rockaway.
"She received her award during a rededication of a donor rose garden planted and maintained by the Long Island chapter of Transplant Recipients International Organization, an organ donation advocacy group."
Source: Sunday's Newsday, September 27, 2009

Long Island TRIO Annual Donor Rose Garden Re-dedication Ceremony
For Immediate Release
From Mike Sosna, Long Island TRIO

Transplant Recipients International Organization
Long Island Chapter

Long Island TRIO Member Receives Kidney From His Teacher (story below)

Re-dedication ceremony for the Organ Donor Rose Garden, planted and maintained by volunteers at the Long Island chapter of Transplant Recipients International Organization (TRIO).

The annual ceremony honored those who have given others new life.
Website: www.LITRIO.org

Researchers hail heart transplant breakthrough   Long Island TRIO Member Receives Kidney From His Teacher Story featured in Newsday September 17, 2009 A Lesson For Life Jennifer Mazzotta-Perretti never expected that, after giving students an assignment to write about their experiences doing good deeds, she would have the opportunity to do one herself. One student in her summer creative writing class at Nassau BOCES in Wantagh posed the question: Would you give life to someone else if you didn't have to give up your own? She said yes, she would. Then he asked if she would donate one of her kidneys - to him. Again, she said yes. At the time the student, Kevin O'Brien, didn't need a transplant. Later, when he did, he remembered her answer and asked her again. She pledged that she would, not expecting it to work out because the odds were against two unrelated people being a match. But after a blood donor card arrived in the mail stating that her blood type was O positive - the same as his - she felt compelled to undergo more testing and learned that their match went beyond blood. That's when the single mother of one from Levittown prayed - and decided to go through with the donation. "It was an awesome feeling that I was going to help this kid with more than reading and writing," said Mazzotta-Perretti, 32, who is also the special education director at the Hebrew Academy of the Five Towns & Rockaway. On Sept. 3 at Columbia University Medical Center, Mazzotta-Perretti fulfilled her promise and gave 19-year-old O'Brien one of her kidneys. O'Brien said that after years of feeling tired, he immediately felt energized. "You wake up and you're like, 'Whoa, is this for real?' " said O'Brien, of Oyster Bay. "I feel better than I have in quite some time." When he was 3, blood drawn from a finger prick led to the discovery of an obstruction in one of his ureters - tubes that connect the kidneys to the bladder - that was causing urine to back up and damage the right kidney. Within months, surgeons implanted the tube deeper into the kidney to prevent the reflux. Two years later, the same procedure was necessary for his left kidney. But the surgeries were a temporary fix: Doctors said he would eventually need a kidney transplant. A decade later, on July 1, 2005, O'Brien received a kidney from his father, Neil. But soon after, that kidney began to fail because the drugs he was taking to keep his body from rejecting the new kidney made him susceptible to a virus, which damaged the kidney. His mother, Heidi, wasn't a match for her son and tried to arrange a kidney swap: She would donate a kidney to someone she did match - and who, in turn, would provide a willing donor who was a match for Kevin. That strategy didn't pay off, and Kevin's name was put on a waiting list - where it could have taken him eight years to get to the top. "We were devastated," said Heidi O'Brien, 52, of Oyster Bay. "We had done everything we could do." Then Mazzotta-Perretti called her and said she would give Kevin her kidney. Heidi O'Brien said she was "in awe that a person would do that for my child." "We are so grateful to Jennifer," she said. To pay Mazzotta-Perretti's favor forward, Kevin O'Brien said he wants to work with scientists to clone human organs. He said he also wants to encourage people to donate the organs of their deceased loved ones and pledge to donate their own organs when they die. "Give the organs to someone who can use them," he said. But first, now that his health is improving, O'Brien will have to finish his junior and senior years of high school. Looking back on his quest for a donor, O'Brien said the best thing he did was put his teacher on the spot. "You gotta not be afraid to ask for what you need," he said. "I needed a kidney and I have it." <> 2009 Organ Donor Awareness Night at CitiField-August 19, 2009

The Long Island TRIO Singers performed the National Anthem at this Atlanta Braves Vs. New York Mets baseball game at CitiField. New York Mets Award Ceremony on the field at Citifield as Long Island TRIO helps publicize the importance of saving lives with organ donation. Long Island TRIO presented: “Organ Donation Awareness Night” at CitiField. This event was heled on August 19, 2009.   Wearable Kidney May Replace Dialysis Machine New Law Seeks to Increase Organ Donation Source: http://www.hanys.org/ Governor David Paterson has signed into law a bill (A.904-A/S.3910) that sets an order of priority for who makes decisions about organ donation when someone has died. The bill amends the Anatomical Gift Act to allow a broader list of people to make donation decisions for individuals who have, in advance, authorized such decision making. The bill responds to situations where family members oppose organ donation even though the deceased person wanted to be an organ donor. That situation is common when relatives or partners are in grief over the loss of their loved one. Given the shortage of organ donors in New York, the bill seeks to increase the availability of organs for transplant by adding three new categories of people who can make donation decisions: someone who is a designated health care proxy, someone who has been chosen as a disposition-of-remains agent, or a domestic partner. The bill then establishes an order of priority for who determines organ donation. HANYS and Healthcare Trustees of New York State (HTNYS) are collaborating on a new initiative to encourage members to promote organ donation awareness within their facilities and communities. HANYS and HTNYS are working with the New York State Alliance for Donation to provide hospitals, health systems, and continuing care systems across the state with brochures and posters that contain educational information about organ donation. The goal is to increase organ donation awareness across the state over the next several years and engage health care provider employees and members of the community in the process.   Machine Saves Patients Awaiting Liver Transplant Yankee homered on same night she received a heart transplant!   Important: Build Support in the House of Representatives to Extend Immunosuppressive Drug Coverage Ask your Representative to co-sponsor HR 1458, legislation that would extend Medicare coverage of immunosuppressive drugs beyond the first 36 month after transplant. The bill will help transplant recipients maintain their kidney function, and will allow others to consider a transplant because they know the expensive drugs they need will be available without a time limitation. Organ transplant recipients must take immunosuppressive drugs for the life of the transplant to help prevent the body from rejecting the organ. Currently, Medicare pays for most kidney transplants but covers drugs for only 36 months post-transplant as part of the Medicare ESRD benefit. After that, kidney recipients must pay for immunosuppressive drugs through private insurance, public or pharmaceutical programs or pay out-of-pocket. (Medicare covers drugs without a time limit if the patient qualifies because of age or disability status.) Immunosuppressive drugs are expensive, but the alternative is even more costly. Medicare spends an average of $17,000 annually per transplant patient. If the kidney transplant fails, the person returns to dialysis at which point, Medicare spends an average of $71,000 per year on a dialysis patient. And quality of life often suffers as well. Please show your support and contact your Represdentative today. Build Support in the House of Representatives to Extend Immunosuppressive Drug Coverage After following the above link, you will be able to enter your Zip code in order to contact your Representative. Sincerely, Mike Sosna, President Transplant Recipients International Organization- Long Island Chapter Chairman, Public Policy- TRIO International 5440 Little Neck Parkway Suite 4H Little Neck NY 11362 Tel: 516.902.8111 Email: mike@sosproductions.com Website: www.LITRIO.org NYP/Weill Cornell physician-scientists present at 2009 American Transplant Congress in Boston   Remember and Rejoice   My father and I were invited to speak at and participate in this wonderful event honoring Donors and Donor Families. Our friends at our sister chapter- TRIO Manhattan held the wonderful "Remember and Rejoice" event at St. Patrick's Cathedral on April 4, 2009. We hope you will join us next year at this very special annual Ecumenical Service honoring and remembering donors and their families. -Mike Sosna Thanks for a great May 2009 meeting with wonderful participation by all attendees. Our special guest speaker was David Leeser, MD, Transplant surgeon and we had a great time with a great deal of sharing and support. According to the most recent feedback, our members had a great time at what has become a monthly evening of positive feedback on the part of living donors, transplant recipients, caregivers and their families. Great news: Larry Kata received his pancreas at NY Pres! We wish him all the best. Larry also previously received a kidney from his wife and now is feeling well after receiving the pancreas!

Join our Virtual Fly-In to Support Immunosuppressive Drug Coverage

Chain results in 10 kidney swaps among strangers

ALERT New Law May Allow Americans to Purchase Imported Drugs

ARTIFICIAL LIVER EXTENDS LIVES

Hot of thre press:

Protocol Improves ABO-Incompatible Transplants

Three Sisters Find Kidney Donor for Dad Using Craigslist

The power to save lives

November 18, 2008

OPTN/UNOS Board Addresses Safety for Living Donors

St. Louis -- The OPTN/UNOS Board of Directors, at its meeting today, adopted a policy to improve the safety of living organ donation by specifying that living donor organ recovery and transplantation must take place in OPTN member transplant centers.

Check out this .pdf Choosing a Medigap Policy -2009

Comparing Medicare Prescription Drug Plans: The Medicare Prescription Drug Plan Finder

President George W. Bush signed into law the Stephanie Tubbs-Jones Congressional Gift of Life Medal Act (HR 7198).

Directions to our monthly meetings:

September 13, 2008 Photos

Upcoming Events- more information

Recognizing The Brave And
Selfless Act of Organ Donation

Update:Stephanie Tubbs-Jones Congressional Gift of Life Medal Act (HR 7198).

I’m pleased to report that the House
of Representatives and the Senate has passed the
Stephanie Tubbs Jones Gift of Life
Congressional Medal Act. These bills direct
the Treasury department to design
and produce a commemorative
medal that the Department of Health
and Human Services will award to
organ donors or to a surviving family
member. Enactment of this legislation
would have no cost to the Federal
Government. The medals will be
funded by charitable donations and
organizations including TRIO and its
membership.
-Mike Sosna

Medicare STUDY SHOWS 3.4 MILLION HIT DOUGHNUT HOLE Metvix® prevents pre-cancerous lesions in transplant recipients New York City to Explore a Way to Add Organ Donors Senator Kemp Hannon and Long Island TRIO held a joint press conference on Valentine's Day- February 14, 2008 A Letter from Senator Hillary Clinton to LI TRIO How the Spanish donor system works Long Island TRIO In The News: This article appeared in Suffolk Life on April 16, 2008

TRIO is represented by the Tree of Life. With its intertwining branches, the Tree of Life symbolizes the intertwining of the lives of two human beings, the donor and the recipient,through the Gift of Life. It depicts growth and new life and reinforces the new beginning transplantation gives to the recipient.

E-Mail Tree litrio@gmail.com LI TRIO Webmaster: Mike Sosna email address mike@sosproductions.com Copyright © 1995-2009 TRIO Long Island Chapter LITRIO.org All rights reserved