TRIO- Long Island Chapter PO Box 81 Garden City, NY 11530 www.litrio.org Hotline 516-942-4940

Enroll in The New York State Organ and Tissue Donor Registry

Join our TRIO FaceBook group todayJo We have 800 members in our FaceBook group. You can also subscribe to our Transplant Recipients Discussion Google Group as well by entering your emal below.

Email:

Our meetings begin at 7:30 PM and are held at
145 Community Dr., Manhasset, NY.
Meeting time

Printable New York State Donate Life Registry Enrollment Pamphlet

Download our February 2011 Issue- LI TRIO Newsletter


*** Our next meeting ***

Long Island TRIO is presenting a special Rogosin Institute Panel Discussion led by Dr. Serur at our February 8, 2012 meeting at 7:30 PM at 145 Community Drive, Great Neck in the executive conference rooms. Rogosin is affiliated with NewYork-Presbyterian Hospital, Weill Cornell Medical College and is a member of NewYork-Presbyterian Healthcare System. The Rogosin Institute was established in NewYork City in 1983 as an independent, not-for-profit institution for research, treatment, and education in kidney disease (including dialysis and transplantation) and cardiovascular disease secondary to cholesterol and other lipid disorders.

Dr. Serur is the Medical Director of The Rogosin Institute Transplantation Program and Associate Professor of Clinical Medicine, Weill Medical College of Cornell University. He is also an Associate Attending Physician at NewYork-Presbyterian Hospital/Weill Cornell.

Please join us for an informative presentation and discussion with Dr. Serur and his team and there will be a question and answer period as well. The topic for the evening will be "Current Protocols In Kidney, Pancreas and Kidney/Pancreas Transplantation."

 

speaker's bureau

*** Our most recent meeting ***


Our most recent meeting on January 11, 2011 featured Carole Hazen MD as our guest speaker. Dr. Hazen specializes in dermatology and MOHS surgery and practices in New Hyde Park. The topic of the presentation was 'Skin Cancer, Sun Exposure And The Transplant Recipient'. Thank you Dr. Hazen for your informative presentation.

 

*** Long Island TRIO Legislative Initiatives ***

Long Island TRIO is continuing our phone calls and continuing to send letters to the governor with regard to the Anti Mandatory Mail Order bill in New York State.

Should New Yorkers be mandated and forced to only purchase prescription medications from mail order houses out of state?
Some consumers are required by their health insurance plan to purchase their prescription drugs only through mail order now. We think that New Yorkers should have a choice with regard to where they purchase their prescription medications.

If this bill is signed into law, New Yorkers will have a choice.

Please keep up the good work. The bill was passed unanimously in the New York State Assembly and also passed 62-2 in the New York State Senate. Gov. Cuomo has still not signed the bill even though the state legislature stepped up and passed this bill five months ago.

When you call the governor's office, you can refer to the bill as the AMMO bill and the bill is AMMO is an acronym for "Anti Mandatory Mail Order" and bill can be referenced as A 5502.

Please call the governor at 518-474-8390

Example of call conversation: Hello, I am ________ and I live in _________. I would like to leave a message for Governor Cuomo. Please ask him to preserve my right to fill my prescriptions at my local pharmacy by signing A.5502 into law. Thank you.

Let the governor know that you know that this bill passed in the New York State Assembly and it passed in the New York State Senate as well. It's now on the governor's desk.

Here is the background:

The New York State Assembly and Senate passed legislation that would provide consumers with choice on where to purchase their prescription drugs. Currently, some consumers are required by their health insurance plan to purchase their prescription drugs only through mail order. Under this legislation, these consumers would have the option of purchasing their drugs from a local pharmacy.

New York's community pharmacies have been reeling after years of reimbursement cuts and the proliferation of mail order mandates. Over 350 independent pharmacies have closed since 2008.

In fact, mail order mandates have resulted in over $5 billion worth of pharmacy business leaving the state every year. These dollars go to states with large mail order houses.

We have nothing against mail order purchases and sales but feel that consumers should have a choice.

What do you think?

Should New Yorkers be mandated and forced to only purchase prescription medications from mail order houses out of state?

Most importantly, this bill will result in no price increases for consumers or health insurers. The bill requires that the local pharmacy be reimbursed at a comparable price as the mail order pharmacy. Health plans will continue to be able to set co-payment amounts for their customers.

Once the bill is signed, This act shall take effect on the thirtieth day after it shall become a law and shall apply to all policies and contracts issued, renewed, modified, altered or amended on or after such effective date.

This bill will allow most New Yorkers to choose their pharmacy without any financial penalties or hindrances. The copays will be the same as mail order. The quantities will be the same as well.

<>

*** November 2011 Meeting ***

At our November 9, 2011 meeting our special guest speaker was Lew Teperman, M.D.- Director Of Transplantation- NYU Langone Medical Center. Dr. Teperman. is Associate Professor; Vice Chair Department of Surgery and Chief Of Transplant Surgery for NYU Transplant Associates at NYU Langone Medical Center.


Dr. Teperman is a great friend who helped our founders set up Long Island TRIO. Dr. Teperman has created an internationally recognized transplant program at NYU Medical Center.

Among hundreds of published journal articles studies and papers, Dr. Teperman researched and published a report on U.S. surgeon and medical student attitudes toward organ donation as well as Donor-derived disease transmission events in the United States with data reviewed by the OPTN/UNOS Disease Transmission Advisory Committee.
Towards the goal of forwarding the medical science of transplantation, Dr. Teperman's program is involved in research with treatment protocols that study the recurrence of hepatitis C, new immunosuppressive agents, thrombocytopenia, organ preservation, and plasma exchange in liver failure and primary non-function of organ grafts.
Thanks for an interesting and informative meeting with Dr. Teperman and I look forward to seeing you at our upcoming events including our 2011 Holiday Party (see post below).

<>

Thanks for attending our Holiday Party- 2011

Our chapter's Annual Holiday Party was held at Leonard's Of Great Neck on December 4.

<>Li TRIO Holiday Party at Leonard's Of Great Neck

Long Island TRIO  Sosna Conte  New York State Transplant Council

Long Island Herald Article

LI TRIO donor Rose Garden Article in LI Herald

Long Island TRIO's re-dedication of donor rose garden In Eisenhower Park

L.I. needs more organ donors
Local man waits, hopes for a new heart

By Shannon Koehle for the Long Island Herald

A Rose Garden rededication ceremony to honor Long Island organ donors took place last Saturday in Eisenhower Park.
Approximately 300 people turned out for the 16th annual ceremony — which years ago attracted just a handful of people.

"These donor families are unselfish in a time that is tragic," said Mike Sosna, president of the Long Island Transplant Recipient International Organization. Sosna became involved with TRIO after receiving a kidney from his father, and was named president of the organization in 2006.

"We're here today to honor donors and donor families who have given the gift of life," he said.

One 11-year-old recipient who attended the ceremony is actively trying to change lives. Lauren Shields, who spoke at the event, was infected with a virus that attacked her heart, said her mother, Jeanne. Lauren underwent a successful heart transplant in March 2009.

 

Lauren Shields LI TRIO EVent COURTESY LONG ISLAND TRIO
Lauren Shields, 11, is a heart recipient, and spoke at the Rose Garden Rededication on Saturday
.

While Jeanne Shields said she is grateful that someone chose to donate their heart for her daughter to use, she added, "When you're on the other side and waiting, it can be the most helpless feeling in the world."

According to Sosna, 18 Americans die every day waiting for a donor organ, and 1,257 people had organ transplants in New York in 2010. Given those numbers,

Lauren and her mother decided to get involved in the effort to increase donor registration on Long Island.

New York state has among the fewest registered organ donors in the nation, said Sosna, and a main reason is that when residents are asked to enroll in the donor registry on the form at the Department of Motor Vehicles, a response is not required.

Now, the Shields family and TRIO are working to implement Lauren's Law. The legislation would require residents to state whether or not they want to be an organ donor.

Jeanne Shields explained that it is important to have the words "not at this time" on the form for those who choose not to participate rather than just "no," because otherwise doctors would not be allowed to ask their families about organ donation.

 

Gillian Lauren and Mike Sosna

COURTESY LONG ISLAND TRIO Mike Sosna, Gillian Cohen and Lauren Shields give a rose to each donor family honored at LI TRIO's Donor Roise Garden Cremony

While the proposed law easily passed the State Senate's Transportation Committee in April 5, and was approved by the full Senate on Lauren's birthday, April 13, TRIO came up against unexpected opposition in the Assembly, and will return to the Legislature in a few months to try again.
Another important organ donation measure, signed into law nearly three years ago, enables New Yorkers to sign up to be organ donors online, Sosna said. But despite its approval, he added, the law has yet to be implemented.

Roses for Donor Families COURTESY LONG ISLAND TRIO

Red and yellow roses were distributed to donor familiesat the Rose Garden Rededication.

Hundreds of New Yorkers are in need of organs, one of whom is East Meadow resident Jeff Whitman. Whitman was born in 1966 with a heart block and a murmur. Due to the relatively primitive technology of the time, doctors decided to simply monitor his condition.

Whitman, who moved to Connecticut and lived there until recently, received a pacemaker when he was 23, to stimulate his decreased heart rate. Years later, when his heart problems worsened, he received a biventricular device to improve his heart function.

During that procedure, doctors accidently perforated his heart, but they were unaware at the time that they had done so. For Whitman, the pain and chest pressure got worse as months passed. His doctors finally realized that his lungs and heart were filling with fluid and determined the cause. He was told he would need a heart transplant.

Whitman has nearly died a number of times, enduring heart rhythm problems that caused the device in his chest to shock him as it attempted to establish a normal rhythm, an infection of an implanted ventricular assist device, known as an LVAT, allergic reactions to medications and induced comas.

He was first placed on a transplant list in March 2009, when he received the LVAT, but he was removed the following year, when his wife was re-diagnosed with colon cancer. Prospective donors must have support at home in order to stay on the list. Last June, his wife died.

Living in a rehabilitation facility after another stint in the hospital, Whitman was looking for friendship and support when he reconnected with a former high school friend, Denise Tristano Pascalis.

"He needed a home and support to get back on the list," said Pascalis. She opened her arms and her home to him.
Two weeks ago, East Meadow residents welcomed Whitman home with a gathering at Miller's Ale House. He is now a patient at Montefiore Medical Center and — now that he has support — is hoping to get on the facility's heart transplant list within the next few months.

"Good things have to come your way at some point," said Pascalis.

To learn more about LI TRIO, visit www.litrio.org.

To contact Jeff Whitman, email him at xcaliber36x@aol.com/ Comments about this story? SKoehle@liherald.com or

(516) 569-4000 ext. 287.

Source:

http://www.liherald.com/eastmeadow/eastmeadow/stories/LI-needs-more-organ-donors,35801?page=1&content_source=

LIHERALD.com

Long Island TRIO- Photo by Michael Sosna Donor Rose Garden

Thanks for attending our chapter's re-dedication of our "Donor Rose Garden" in Eisenhower Park on Long Island on September 17, 2011


LI TRIO and NYODN honored and thanked Donors and Donor Families as we re-dedicated our "Long Island TRIO Donor Rose Garden" to Donors and Donor Families in a ceremony held on Saturday, September 17, 2011 at 12 Noon. The Donor Rose Garden is located in Eisenhower Park, East Meadow, NY in Nassau County- adjacent to the Women's Sports Pavilion-Parking Field 6/6A.

Donors and Donor families are indeed our heroes.

The Long Island TRIO Annual Rose Garden Ceremony

An event that honors those who have given life to others.
By Cindy Springsteen

LI TRIO Donor Rose Garden Article

Long Island TRIO Mike Sosna Judy Jacobs  Donor Rose Garden

Legislator Judy Jacobs and LI TRIO President Michael Sosna, Credit Nassau County Legislator Judy Jacobs and The Long Island Chapter of Transplant Recipients International Organization

The Long Island TRIO Annual Rose Garden Ceremony honors donors and donor families, those who have given others a new life.

Nassau County Legislator Judy Jacobs attended the ceremony, which was hosted by The Long Island Chapter of Transplant Recipients International Organization. The event took place at Eisenhower Park Sept. 17, 2011.

Healthcare profressionals, members of Long Island TRIO, the NY Organ Donor Network, as well as organ and tissue recipients, and the donor families were the guest speakers at the ceremony.

Mike Sosna, president of LI TRIO welcomed and honored the donors and donor families as he explained that "LI TRIO is a non-profit all volunteer organization committed to improving the quality of lives touched by the miracle of transplantation through support, advocacy, education, and awareness. We keep in mind today that there are currently over 112,264 people waiting for the Gift Of Life.

" I find it concerning that more than 90% of Americans say they support organ donation, but only 30% know the essential steps to enroll in a Donor Registry, " he said.

Sosna continued: "The Donor Families made a decision to save lives at what could have been the most challenging and difficult time in their lives. As volunteers, we try to volunteer helping with The New York State Donor Registry in order to help spread the message and positive effect of The Gift Of Life. We try to do what we can to thank donor families in a sincere manner although we know that words are just not enough. As recipients, we try to also thank our heroes with deeds such as making a commitment to volunteering as much as we can and telling our story to others as a way of promoting the importance of saving lives with organ donation."

Jacobs' speech was one that also gave a personal touch of experience on transplants. "This is always such a moving and inspiring event and it is humbling to be in the presence of such outstanding individuals," she said.

"My brother in law is a kidney/liver transplant survivor. I had the honor of meeting two young girls. One, Lauren Shields is a heart transplant survivor and the other, Gillian Cohen, is a liver transplant survivor.

Legislator Judy Jacobs added that "Words cannot adequately thank the Donor Families for their compassion at such a difficult time, nor can words express the awe one feels for those who have triumphed to live fruitful lives following the transplant they so desperately needed."

To visit the Donor Rose Garden you can find it in Eisenhower Park, adjacent to the Women's Sports Pavilion Parking field 6/6A.

----

 

go to news page LI TRIO's Donor Rose Garden---Go to our chapter's Re-dedication ceremony page go to news page

***

Newsletters:

Download our February 2011 Issue- LI TRIO Newsletter

LI TRIO Newsletter Download our October/ November 2011 issue- LI TRIO Newsletter LI TRIO Newsletter

LI TRIO Newsletter Download our September 2011 issue-Fall 2011 LI TRIO Newsletter LI TRIO Newsletter

Download our Spring 2011 LI TRIO Newsletter LI TRIO Newsletter

Download our Winter 2011 LI TRIO Newsletter LI TRIO Newsletter

 

LI TRIO Picnic with the Ducks!- Long Island TRIO hosted our annual Suffolk event at the LI Ducks baseball game on August 17, 2011.go to news page

The Long Island TRIO singers performed our nation's National Anthem at the beginning of the LI Ducks Baseball Game and helped promote the imporance of saving lives with organ donation awarenes.go to news page

<>

UPDATE:

Organ-donor bill named for our friend Lauren passed the Senate but did not pass in the New York State Assembly! go to news page

Lauren's Bill would require driver's license applicants to check "yes" or "not at this time" in the organ-donor box on the form. Currently, filling out the information is optional in New York State. go to news page

Please remember that our meetings begin at 7:30 PM and are held at
145 Community Dr., Great Neck, NY.

Download our October/ November 2011 issue- LI TRIO Newsletter

From Mike Sosna, President
Long Island Transplant Recipients International Organization

Our chapter has issued a Public Policy Statement with respect to the serious Medicaid (AHCCCS) situatiion in Arizona. Our national organization's Board Of Directors has also voted to endorse our Public Policy Statement.go to news page

 

In their continuing effort to change the national kidney allocation system, the OPTN/UNOS Kidney Transplantation Committee requests feedback from the transplant community and the public on three proposed concepts for allocation.go to news page

 Long Island TRIO-Legislative Initiatives

Lauren Shields and her wonderful parents are Long Island TRIO members who have a desire to volunteer and help in any way they can. They are very generous with their time and I think you'll find that as you get to know Lauren, you'll be speaking with a very special young lady who has received the Gift Of Life and wishes to give back every day.go to news page

Lauren was a guest speaker at LI TRIO's 2011 Donor Rose Garden Ceremony.go to news page

Lauren's Law is named after 10 year old Lauren Shields who received a heart transplant in March 2009.go to news page

 

U.S. Pilot Program-Kidney Exchange Program Reports First Transplants
December 11, 2010: A U.S. pilot program that helps arrange kidney exchanges had its first success this week when two participants received new kidneys. go to news page

Hoyer Statement on Final Passage of Medicare Physician Payment Rate Extension go to news page

In just a few short weeks, the doughnut hole will begin to gradually close although it will take until 2020 for the hole to be closed.go to news page

Download our October/ November 2011 issue- LI TRIO Newsletter

More photos go to news page

Kidney Chains Link Total Strangers Saving Lives
"The American Spirit:" An Inside Look at a Donor Chain that Connected 20 People to Save 10 Lives
go to news page
By Katie Couric
CBS Videos:
Kidney Chains Link Strangers
Katie Couric has an inside look at a kidney exchange in which 20 people bound by selflessness and "The America Spirit" helped save 10 lives
.
 
Surgeon on Kidney Transplant Chains
Katie Couric speaks with Dr. Sandip Kapur, Chief of Transplant Surgery at New York Presbyterian Hospital Weill Cornell Medical Center, about surgeries he performed as part of a unique kidney swap donor chain program, which unites strangers in order to save lives
.

Study bolsters organ research: Generating functioning human livers through biomedical research is one of the great hopes to address an increasing need for liver transplants.
Researchers at the Wake Forest Institute for Regenerative Medicine believe that they are providing a slice of that hope.
go to news page
Governor Paterson signed the bill into law! Here is a first person account of our Legislative Initiative efforts written by Ed Burki go to news page

<>

Download our October/ November 2011 issue- LI TRIO Newsletter

If you do not have Acrobat Reader, Click here to download it for free.


Long Island TRIO presented the 2010 Organ Donation Awareness Night at Citi Field as the Mets played the Phillies on August 15, 2010.go to news page

ESPN chose our game as ESPN's "Game Of The Week" and the game was televised nationally.

Every year, The LI TRIO Singers perform the National Anthem on the field at a New York Mets game, and our volunteers work at tables in order to help enroll fans in the New York State Donate Life Registry. We also produce a Public Service Announcement that is played on the large screen at the Mets game in order to increase awareness of the need for Organ Donation and to show that Transplantation works!
Thanks for supporfting this annual event that helps save lives.

The Long Island TRIO Singers performed our nation's National Anthem on the field at Citi Field as we opened the Mets vs Phillies game on August 15, 2010. Our LITRIO volunteers helped enroll fans in the Donate Life Registry.

Organ Donor Awareness Night at Shea Stadium - July 22, 2008go to news page

Would you like to read profles and stories about our LI TRIO members? go to news page

Michael is a Nassau County Police Officer. His wife Jen is a teacher and her former student donated one of his kidneys to Michael. Here is the story is Michael's words. go to news page

I am writing to you to share my story of “life”. My name is Michael Palazzo; I am 37 years old and a Nassau County Police Officer

Download our October/ November 2011 issue- LI TRIO Newsletter

Upcoming Events go to news page

<>

Our friend and Long Island TRIO member Mak (MaryAnn) Steinbock has received the Gift Of Life
March 2010: Snowstorm liver transplant is a miracle for Long Island woman go to news page

Mak threw out the first pitch at a 2010 Mets game at Citifield.

Member Profiles

Total Care RX

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

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.go to news page

 

Wearable Kidney May Replace Dialysis Machine go to news page

New Law Seeks to Increase Organ Donation go to news page

Machine Saves Patients Awaiting Liver Transplant go to news page

Yankee homered on same night she received a heart transplant! go to news page

After following the above link, you will be able to enter your Zip code in order to contact your Representative.

Remember and Rejoice

My father and I were invited to speak at and participate in this wonderful event honoring Donors and Donor Families at St. Patrick's Cathedral in New York City.

Our friends at our sister chapter- TRIO Manhattan held the wonderful "Remember and Rejoice" event at St. Patrick's Cathedral on April 4th. We hope you will join us next year at this very special annual Ecumenical Service honoring and remembering donors and their families. -Mike Sosna

 

ARTIFICIAL LIVER EXTENDS LIVES go to news page

The Stephanie Tubbs-Jones Congressional Gift of Life Medal Act (HR 7198). go to news page

Directions to our monthly meetings:

A Letter from Senator Hillary Clinton to LI TRIO

How the Spanish donor system works go to news page

Long Island TRIO In The News: This article appeared in Suffolk Life on April 16, 2008 go to news page

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@optonline.net

LI TRIO Webmaster: Mike Sosna

email address mike@sosproductions.com

Copyright © 1995-2012

LI TRIO

Long Island Chapter LITRIO.org

All rights reserved


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

More LI TRIO Links

More LI TRIO Links

Member Profiles

Check out this .pdf Choosing a Medigap Policy

Our Annual LI TRIO Donor Rose Garden Ceremony Honoring Donors and Donor Families. go to news page

 


Enroll in The New York State Organ and Tissue Donor Registry

 

Our meetings are held at 145 Community Drive, Manhasset NY

Directions to the meeting location are here

To send a donation to Long Island TRIO

Long Island Chapter- Mission

Here is a first person account of our Legislative Initiative efforts written by Ed Burki go to news page

Visit our Transplant News Page go to news page

Please check out the upcoming events pagego to news page

More LI TRIO Links

Total Care RX

Please Visit the Stephanie Joyce Kahn Foundation

 

Enroll In The The New York State Organ and Tissue Donor Registry

Find Your Member of Congress

Long Island TRIO- Mission

Donor Awareness

Support

Education

Advocacy

LI TRIO Hotline: 516.942.4940

LI TRIO Webmaster:

Mike Sosna

email comments mike@sosproductions.com

Copyright ©2011 TRIO

Long Island Chapter LITRIO.org

All rights reserved