TRIO- Long Island
Chapter PO Box 81 Garden City, NY 11530 www.litrio.org 516-942-4940
Enroll in The
New York State Organ and Tissue Donor Registry
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to Transplant Recipients Discussion
Transplant
Recipients and Food Safety- at LITRIO.org
Download our March 2010 LI TRIO Newsletter
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you do not have Acrobat Reader, Click
here to download it for free.
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.
<>
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.
<>
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!
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.
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
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.