Upcoming Events

Our meetings begin at 7:30 PM and are held at
145 Community Dr., Great Neck, NY.

Download our February 2011 Issue- LI TRIO Newsletter

*** Our next meeting ***

LI TRIO Meeting-February 8, 2012 at 7:30 PM

Current Protocols In Kidney, Pancreas and Kidney/Pancreas Transplantation

Our next meeting will feature a special discussion panel with the team from the Rogosin Institute led by Dr. Serur . We meet 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."
Refreshments will be served.•

LI TRIO January Meeting

"Skin Cancer, Sun Exposure And The Transplant Recipient"

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 an informative presentation.
Helena McDermott graciously submitted the following report and we would like to congratulate Helena and her husband on the birth of their son Charles Joseph (Charlie)!

Treatments For and Prevention Of Various Types Of Skin Cancer

by Helena McDermott

On Wednesday, January 11th, 2012 we had the pleasure of meeting Dr. Carole Hazan, Director of Aesthetic and Surgical Dermatology of NY. As a kidney recipient, I am aware that there are increased risks of developing skin cancer, due to the immunosuppressants that I am prescribed. I was glad Dr. Hazan took the time to explain the types of skin markings to look out for, treatments for various forms of skin cancer and also the methods of prevention.

Dr. Hazan stated that there are 50,000 new cases of Melanoma every year. This is the most serious form of skin cancer because it spreads and it is most often detected by the patients themselves. The most common form of skin cancer is called Basal Cell Carcinoma, which appears to be a "sore that doesn't heal", according to Dr. Hazan. 90% of skin cancer diagnoses are in the form of Basal Cell Carcinoma, which luckily do not spread to the internal organs.

There are six types of treatments that Dr. Hazan would conduct depending on the type of skin cancer. They include radiation, ED and C (when the area of skin must be scraped and burned), cryotherapy (when the marking is frozen off). After these treatments there is a 20% to 30% chance the skin cancer will reoccur. Topical cream and Standard Excision are also used as forms of treatment. The sixth treatment is Moh's Micrographic Surgery which is used on sensitive areas and larger legions; usually two or more centimeters. With Moh's, there is only a 1% to 2% chance that the skin cancer will return.

Means of prevention are pretty standard: using sunscreen, sun avoidance and skin surveillance. Dr. Hazan stated that most people are just not applying sunscreen correctly. She explained that in order for sunscreen to work effectively it must be applied half an hour before sun exposure and subsequently applied every two hours. She mentioned using a "shot glass" of sunscreen with each application. The best kind to get is the thick and pasty kind and not a liquid or a spray. Dr. Hazan said she brought two bottles of sunscreen for a weekend vacation with her family and a bottle of sunscreen should definitely not last us the entire summer! She also emphasized that sunscreen should be used all year round with an SPF of at least 30. Skin cancer develops over time and is not from just one burn.

The group had many questions for Dr. Hazan and she answered each one thoroughly. As a new mother of a four month old, I was wondering which sun block was best for an infant. She told me Blue Lizard, Water Babies and Coppertone were safe and effective and that she uses them on her three children.

We thank Dr. Carole Hazan for coming to speak with us and we look forward to talking with her again. If you are looking for a dermatologist for your annual skin exam, Dr. Hazan is located in New Hyde Park. •

Thanks for attending our Holiday Party- 2011

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

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At last month's Wednesday evening meeting: November 9, 2011 our special guest speaker was Lew Terperman, 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.

Thanks for joining us on November 9, 2011 at 7:30 PM at 145 Community Drive, Great Neck, NY as we welcome Dr. Teperman as our special guest speaker. 
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.

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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.

Very truly yours,

Michael Sosna, President
Long Island TRIO

***

For future reference:

Here are directions to the park for our annual Ducks event:

3 Court House Dr. Central Islip, NY 11722

From LIE West of Sagtikos Parkway:
Take Sagtikos Pkwy. south to Southern State Parkway east. Southern State Pkwy. East to Exit 43A, County Road 17 north. Follow signs on CR 17 to Ballpark.

From LIE East of Exit 58:
Take Exit 58 south on Old Nichols Road. Across Route 454, Old Nichols Road becomes County Road 100, Suffolk Avenue. Continue on CR 100 to Lowell Avenue south. Lowell Avenue south to Eastview Drive-make right. Follow signs to the Ballpark.

From North:
Take Route 111 south to County Road 17, Wheeler Road (Wheeler Road becomes Carleton Avenue). Take Carleton Avenue south. Follow signs to the Ballpark.

From Southern State Pkwy. West of Exit 43A:
Take Exit 43A to County Rd. 17, Carleton Avenue North. Follow signs to Ballpark.

From Southern State Parkway and Route 27 East:
Take exit 46 on Route 27 (SSP West) to Exit 43A to traffic signal. At traffic signal, go straight across Spur Drive North onto Eastview Drive. Follow signs to Ballpark.

Thank you and we'll see you at the park!

Long Island TRIO

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Our meetings are held at 145 Community Drive, Great Neck, NY. and we look forward to welcoming you at this informative and important event.

Our General Meetings are held on the second Wednesday of each month from September to June. The meetings begin at 7:30 PM and are held at 145 Community Dr., Great Neck, NY.

Other recent events:

Our March 2011 Meeting

By Helena McDermott

On March 9, 2011 Dr. Sukru Emre, Director, Yale-New Haven Transplantation Center gave an all encompassing presentation about liver transplantation.

Dr. Emre oversees the activities of Yale-New Haven Transplantation Center and its multidisciplinary group of physicians and caregivers, and fortunately for his patients, continues to offer his specialty, adult and pediatric liver transplantation.

During his presentation Dr. Emre discussed the various kinds of single transplantation offered at Yale-New Haven Transplantation Center as well as dual organ transplantations. He discussed the survival rate for adult and pediatric patients, which was 100% for pediatric patients. He explained that although he could perform many more liver transplants a year, than he does, his focus is on the quality of the transplantation and not the quantity of those performed.

Dr. Emre specializes in split liver transplantations in which one liver can be used for three people. He described the different sections of the liver and explained which parts could be used for an infant, a child or petite woman and a larger man or woman. Dr. Emre was very passionate about ending the long wait for transplantation and by using one liver to transplant three people; he is certainly contributing to the cause. Dr. Emre also displayed the kinds of livers that could be considered for transplantation and expressed the need for more live donors to give the gift of life.

Dr. Emre believes that education is the key to ending the long wait we encounter in the New York area. He also expressed the need for those in the pre-transplant stage to become as active as possible in getting the word out about donating life and transplantation.  He believes with split liver transplantation and the kidney chains and swaps, living donation can increase and therefore decrease the wait people are enduring.

 Dr. Emre also led the meeting in an informative and important discussion about the UNOS Kidney Committee’s proposal document with their suggested changed in deceased donor kidney allocation. Dr. Emre cited many points stated in the New York Times Op-Ed piece that also appears in this issue of our chapter’s newsletter.

We thank Dr. Emre for his passion and dedication to the transplant community and for an extensive presentation about liver transplantation.  

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Our General Meetings are held on the second Wednesday of each month from September to June. The meetings begin at 7:30 PM and are held at
145 Community Dr., Manhasset, NY.

:ast year's event:

LI TRIO presented our annual Organ Donation Awareness Night at Citi Field to be held on August 15, 2010 at 8 PM. Every year, our 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 produced a Public Service Announcement that was 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!

Long Island TRIO- Organ Donation Awareness Month Legislative Initiatives and Events:

The Long Island chapter of TRIO is very lucky to have dedicated volunteers making all of the following initiatives possible. We are pleased to team with our coalition partners inclusive of Senators, Members of the Assembly, NYODN, and Transplant Centers as we travel to Albany to help save lives and truly make a difference.

Long Island TRIO commemorated Organ Donation Awareness Month as we participated in over a dozen events during April, 2010. Our festivities and events included a 27 April, 2010 trip to Albany, New York where we scheduled appointments with New York State Senators and Members of the Assembly in their Capitol District offices.

Our chapter obtained New York State official proclamations that proclaimed April 2010 to be forever known as and referred to as "Organ Donation Awareness Month" in New York.

We met with Assemblymen and Senators who are working with Long Island TRIO and our coalition partners in order to improve the New York State Donor Registry Of Consent. We will also ask for support from Senators who have promised to meet with us as we teach them about the important of New York State accepting "Electronic signatures" as legal consent in order to make an anatomical gift. This will help our chapter's volunteers who work throughout the year signing up new donors to the Donate Life Registry. We also have a legislative initiative that will ensure that the "Registry choice" is not skipped and that New York State will require all drivers (when renewing their licenses) to either check the box and register in the NYSDL Registry or check a box saying that they defer this decision to their families or a later date. We are also trying to accomplish another important goal; that is for New York State to eliminate the requirement of each person checking off specific body parts to be donated.

Our TRIO chapter has led the charge into the classrooms in hospitals, courts, universities, high schools and physician's offices and our LI TRIO speakers bureau lef by Jeff Fenn with George T's assistance over the years has directly reached over 18,000 students in person in the classrooms to date. Our chapter is also seeking support for Legislative Bill Number: A. 292 (Magnarelli) and S.4373 (Oppenheimer) that will require health education regarding organ, eye and tissue donation awareness in every high school in New York State while cooperating with TRIO, the Transplant Community in New York State, and OPO's. These bills call for the requirement of thirty minutes of "Donation Education" in 8th or 9th grade school health classes in high schools. As New York State is asking the donation question of every person applying for a license, it stands to reason that NYS would want its populace to be prepared to make an educated decision. The curriculum and all content and materials will be provided at no cost to all New York State high schools.

We are also meeting with Senators to help garner support for legislation that will provide a tax check off box on personal income tax return forms for gifts for the Life Pass It On Trust Fund for gifts of organ and tissue donation outreach and research. Legislative Bill Numbers: A. 6190 (Titus)and S.4319(Adams), and New York State is considering the following incentives as well:

It has been suggested that the registry be expanded to allow altruistic living donors to register and begin the assessment process. A tax credit would be implemented to help offset lost wages for living donors. This would require a change to the tax code. Legislative Bill Number A.214 (Jeffries) provides a leave of absence for employees in private business who are organ or bone marrow donors and insurance reimbursement to employers for wages and salary paid on such leave. Another bill -Legislative Bill Number A. 4265 (Ortiz) allows a person who donates one or more organs to another individual to receive up to $10,000 tax deduction for non-reimbursed expenses. Our state is also considering a bill that would provide a funeral benefit or nominal state tax credit for deceased donor families to defray the time and any burial costs that may have been impacted by donation. As an example, Pennsylvania adopted a $300 funeral credit or offset several years ago, but has never implemented this credit (to date) due to concerns that it may require federal legislation to overcome "National Organ Transplant Act" restrictions.

Our chapter had quite a full schedule of events for "Organ Donation Awareness Month" this pastApril, 2010. We thank all of our volunteers for making April 2010 a very special "Donate Life Month".

Respectfully submitted by

Mike Sosna, President
Transplant Recipients International Organization- Long Island Chapter
Chairman, Public Policy- TRIO International
5440 Little Neck Parkway Suite 4HLittle Neck NY 11362
Tel: 516.902.8111
Email: mike@sosproductions.com
Website: www.LITRIO.org

2009-2010 Past Events:

LI TRIO Annual Holiday Party- Friday evening, December 4, 2009- Fun for all!

Long Island TRIO presents: “Organ Donation Awareness Night” at CitiField. This event was heled on August 19, 2009.

The Long Island TRIO Singers performed the National Anthem at this Atlanta Braves Vs. New York Mets baseball game at CitiField.

Award Ceremony on the field at Citifield as we help publicize the importance of saving lives with organ donation.

TO SEND A DONATION to Long Island TRIO
Please make your check payable to Long Island TRIO and send it to:

Long Island TRIO

Attention Website Donations -PO Box 81 Garden City NY 11530

We are a member driven all volunteer not for profit organization. Your generous contribution is tax deductable to the extent allowed by law and will support the organ donor awareness programs and activitiesyou see on these pages.

February 21, 2008- LI TRIO volunteers also participated in "Get Game Give Life" at Madison Square Garden where St. John's played Marquette on February 21, 2008. We were pleased to help spread the word about the importance of organ donation and the green bracelets were a big hit.

LI TRIO and Senator Hannon Joint Press Conference

LI TRIO volunteers also participated in "Get Game Give Life" at Madison Square Ga

"On the field, representing North Shore University Hospital in Manhasset is Dr. Ernesto Molmenti, vice chairman of Surgery, and director of the hospital’s Transplant Center for the North Shore-LIJ Health System. Joining Dr. Molmenti we have Donna Dalton, Administrative Director and Adina Conn.
Today we are presenting Jerry Sosna with a New York State Medal of Honor. In a special gift of life in 1995, Jerry donated one of his kidneys to his son Mike. Mike Sosna is president of Long Island TRIO, Transplant Recipients International Organization. Here to present Jerry with the New York State Donor Medal of Honor is Assemblyman Jim Conte from Huntington. Assemblyman Conte is a two-time kidney recipient and ardent proponent of organ donation. On the field, we also have Jennifer Hobbs and Charlotte Berlin representing Astellas Pharma US, Incorporated—proud sponsor of Transplant Experience. "

With nearly 100,000 people across the country in need of a life-saving organ transplant, Astellas Pharma US, Inc. and Long Island TRIO (Transplant Recipients International Organization) are helping take the cause to the field by presenting “Organ Donation Awareness Night at Shea Stadium” during the New York Mets vs. Philadelphia Phillies game on July 22. The event also honored the thousands of donors and donor families across the United States who have already given the gift of life. Story continues below....

Contacts:
Mike Sosna, President
Long Island TRIO
Transplant Recipients International Organization
www.litrio.org
(516) 902-8111

Anne Keshner
On behalf of Astellas Pharma US, Inc.
akeshner@golinharris.com
(708) 790-3135

SHEA STADIUM EVENT DEDICATED TO DEMONSTRATING
THE POWER OF ORGAN DONATION TO SAVE LIVES

Transplant Recipients, Donor Families and Transplant Professionals Take the Field
to Urge Mets and Phillies Fans to Become Champions of Organ Donation

Deerfield, IL, July 22, 2008— With nearly 100,000 people across the country in need of a life-saving organ transplant, Astellas Pharma US, Inc. and Long Island TRIO (Transplant Recipients International Organization) are helping take the cause to the field by presenting “Organ Donation Awareness Night at Shea Stadium” during the New York Mets vs. Philadelphia Phillies game on July 22. The event will also honor the thousands of donors and donor families across the United States who have already given the gift of life.

“One organ donor can save up to seven lives, while a tissue donor can improve twelve or more lives including actually restoring eyesight for another person,” said Mike Sosna, president of Long Island TRIO - Transplant Recipients International Organization. “Each day, about 77 people nationwide will receive the ‘gift of life,’ an organ transplant, but sadly 18 others will die waiting for a transplant. We hope that this event will encourage people to say yes to organ donation.”

At the game, representatives from Long Island TRIO and Astellas will hand out organ donation information and other materials to fans as they enter the stadium, as well as staff donor sign-up stations on each level of the stadium to provide attendees the opportunity to join the New York State Organ and Tissue Donor Registry at the game.

To join the registry, game attendees will complete and sign a short form that includes basic information (i.e. name, address and birth date) indicating that they would like to be listed in the New
York State Organ and Tissue Donor Registry maintained by the State Department of Health.

Information included on the form will also be shared with federally regulated organ procurement organizations and New York State-licensed tissue banks and hospitals.

“I encourage all those that join the registry to share your decision with your family and friends so they are aware of your wish,” said Charlotte Berlin, senior director of immunology at Astellas. “The decision to donate is the decision to give the gift of life.”

The facts* clearly illustrate the urgent need for more organ donors:

• Nearly 100,000 Americans are on the organ transplant waiting list.
• Every 12 minutes, another name is added to the national transplant waiting list.
• Each day, an average of 18 people die because there are not enough organs to save them.
• 90% of Americans say they support donation, but only 30% know the essential steps to become a donor.

About Long Island TRIO

The Long Island chapter of Transplant Recipients International Organization (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. For more information please visit www.litrio.org.

About Astellas Pharma US, Inc.

Astellas is a recognized leader in transplantation and has been committed to the field of immunology for more than 20 years. Dedicated to supporting the advancement of care for patients, Astellas continues to build upon its legacy and leadership in transplantation by investing in ongoing clinical research and new product development.
Astellas Pharma US, Inc., located in Deerfield, Ill., is a U.S. affiliate of Tokyo-based Astellas Pharma Inc. Astellas is a pharmaceutical company dedicated to improving the health of people around the world through the provision of innovative and reliable pharmaceutical products. The organization is committed to becoming a global category leader in focused areas by combining outstanding R&D and marketing capabilities. In the United States, Astellas markets products in the areas of Immunology, Urology, Anti-Infectives, Cardiovascular and Dermatology. For more information about Astellas Pharma US, Inc., please visit our Web site, www.astellas.com/us.
For educational information related to transplantation, visit the multi-award winning site www.TransplantExperience.com.
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John's played Marquette on February 21, 2008. We were pleased to help spread the word about the impo

LI TRIO Webmaster: Mike Sosna email address mike@sosproductions.com

rtance of organ donation and the green bracelets were a big hit. Special thanks to TRIO volunteers, Dr. Teperman, Jack Powers, and NYODN staff members.