Organ Donation Enrollment Day… …was October 6. The day was created by LiveOnNY to boost the number of organ donors in New York State. The goal was to enroll as many New Yorkers as possible. LiveOnNY enlisted Individuals, teams and organizations to spend one day focused solely on getting New Yorkers to enroll as organ donors. Organizations showed their support in a variety of ways such as creating their own teams, hosting a drive, and promoting the cause within their organizations.

As a result of the volunteers’ efforts, 4,000 people enrolled to be organ donors.

Members of Long Island TRIO fanned out across Long Island working for a cause that exactly corresponds to LI TRIO’s mission. We solicited accounts of some members to give a sense of the activity on this day.

Dawn Francisquini RN, BS, BSN of the Kidney Transplant Team at Stony Brook University Hospital filed the following report:

And the results are in.........

......... we WON!!!! Second year in a row for most enrollments for university AND hospital. Total enrollments were 571 combined. LiveOnNY collected a total of 4000 enrollments between all participants. This included about 150 teams altogether. Basically no one even came close to us! West Chester hospital was closest to our hospital numbers but still trailed us by over 100 enrollments!

With all the enrollments from this event NY’s registry went from 25% to 29% of registered residents. I know that doesn’t sound like a lot but given the population in NY it is actually huge! There is still plenty of work to be done to

educate our communities about the importance of organ donation but at least we are definitely making a difference!

A big thank you to each and every one of you for participating in this event with us this year! Let’s do it again next year!

Kathie Gerlach, kidney recipient, landed at the CW Post campus of Long Island University. She worked alongside Gillian Cohen, a liver recipient and student liaison at Post. Kathie collected 45 enrollments at the Pratt Athletic Center to be added to Gillian’s.

(left) Debbie Edelman (heart recipient), Kathie and Gillian; (right)

Kathie with members of the Post women’’ lacrosse team

Joy Oppedisano, LI TRIO President, was at Kemp Hannon’s Annual Senior Health Expo in Garden City. She included parts of her discussion with Leroy Boison, a heart recipient, who was at the Expo and at Winthrop University Hospital. He then followed that up, with Joy, by appearing at Nassau Community College six days later.

Kemp Hannon's Expo was well attended. We chatted with a lot of people non-stop. We had a great table as soon as people entered and facing the door. We needed to dress it up more; I purchased chocolate kisses to donate for our

LI TRIO Long Island 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.

DECEMBER 2016

INSIDE THIS ISSUE

The Rose Garden Rededication Ceremony Celebration of the Season Holiday Party Preview of the Long Island Fight for Charity…and much more Next General Meeting: Best of Health – Self-Care 2017 – December 14

LONG ISLAND TRIO DECEMBER 2016

table, had great butterfly stickers, and some bracelets from the Mets game. They went….Leroy shared that Winthrop was a bit quieter, as far as direct contact, but they had raffles - $100.00 chance as an enrollee and another one where you guess how many bracelets IN the bottle and he spoke to a few of the leaders at the hospital. He also mentioned that they had great posters depicting recipients.

(above)Leroy Boison (left), Joy Oppedisano

(center) with Sen. Kemp Hannon (right) –

(right) Leroy and Joy at Nassau Community

College.

Kidney recipient and LI TRIO Board member Mike Sosna was at Northwell Hospital with his father Jerry. Mike contributed the following:

My father Jerry Sosna and I participated in New York's second Organ Donor Enrollment Day starting at 8 AM at the executive offices of Northwell Health. We were part of a team effort that enrolled 177 people at Northwell.

We had the pleasure of meeting the Senior Vice President, Clinical Excellence and Chief Quality Officer, Chief Physical Assets Officer, members of the board, the legal department, the communications department, support staff and nurses that were part of a scheduled meeting being held in the afternoon hours. Many team members and staff listened to our personal stories and enrolled in the Donate Life Registry on the spot. Ironically, some of these healthcare professionals actually designed the health proxy forms utilized at Northwell Health's 30 hospitals and institutions. We found a common theme as many subsequently stated that they had a good feeling that they were making a difference and they were “Walking the walk” just as they “Talked the talk”. They were also intrigued with Long Island TRIO’s mission and a few of them were often in meetings in the adjacent conference rooms on Wednesday evenings at 145 Community Drive.

Our goal was to work hard at volunteering and to try to achieve as many enrollments as possible in order to someday save more lives while exceeding our efforts put forth when we volunteered at a similar event one year ago. We made it an extraordinary day thanks to the healthcare professionals at Northwell Health being willing to listen even when many entered the building at a fast pace while

just on time or slightly late for a meeting. Of note was the fact that many listened to our brief story and request while walking to the elevators or a stairwell, accepted an enrollment form and promised to return the form to us after their meeting. It was reassuring when we received the Donate Life enrollment forms hours later by those who promised to do so even while they were rushed for time.

We were pleased to meet our goals and at once acknowledged that there is so much more work to do to help our state climb from the bottom of the per capita stats with regard to New York State Donate Life Registry enrollments. My father didn’t even have a chance to sit behind the tables. He immediately relocated our chairs so we would greet everyone as they entered two different entrances. The chairs didn’t get a lot of wear on October 6th.

There were constructive conversations and it was interesting as always hearing how many people have a connection with lives saved by organ donation and transplantation. I recommend this event and I hope anyone wanting to participate next year will contact LI TRIO.

Ruth (liver recipient) and Howie Pohl were at Touro College School of Health Sciences:

We were pleasantly surprised that most of the students had already enrolled as organ donors; many proudly displayed the hearts on their driver’s licenses. Those that hadn’t signed up listened to our delivery, took enrollment cards with them, and promised to consider it. Traffic was a little light at the school as it was exam week. We were excited to learn of a Health Fair taking place there

in April and we promised to be back to sign up more donors.

December Re-Birthdays Noreen Bergesen December 1, 2012 Liver

Niraj Browne December 17, 2015 Kidney

Marie Healey December 3, 2002 Kidney

Nicola Iacobellis December 26, 2000 Liver

Jennifer Pickering December 27, 2000 Kidney

Walter Ruzek December 5, 1989 Kidney

Jan Vetensky December 4, 2011 Kidney

Richard Walk December 27, 1996 Kidney

Jerry Sosna (left) and Mike (2nd from right) with

Northwell staff

LONG ISLAND TRIO DECEMBER 2016

Upcoming Events Wednesday, December 14 – General Meeting – Best of Health – Self-Care 2017 – Dina Grgas nutritionist and liver recipient and Michael Stuart Vernon Long Island Family Caregiver Coalition – 7:00 PM – 145 Community Drive, Manhasset

January Re-Birthdays Shelby Caban January 12, 2004 Heart

Joe DeFilippis January 14, 2009 Liver

George Dillon January 15, 1997 Liver

Howard Fields January 3, 1995 Kidney

Neil Gilmartin January 6, 2000 Liver

Joseph Graffeo January 25, 2011 Kidney

Sunikumar Krishnan January 6, 2006 Liver

Kristen Merz January 19, 2007 Kidney

Mariano C.R. Santos January 4, 2015 Kidney

Catherine M. Tenaglia January 13, 2007 Kidney

The Rose Garden Rededication Ceremony

Eisenhower Park is the scene every year for a most moving event, The Rose Garden Rededication Ceremony. This year’s event, held on September 24, was certainly no exception. The Rededication Ceremony honors those who have given the Gift of Life by donating their organs, and includes both deceased and living donors. Families of organ donors are also honored at the ceremony. The Ceremony was created and is sponsored by Long Island TRIO and LiveOnNY.

The Rose Garden is a wonderfully maintained space that sits dignified and beautiful in a quiet corner of Eisenhower Park. Every donor family receives a rose and rosemary as tokens of the sacrifices made by them and their loved ones. A collection of speakers, including political supporters of organ donation, organizational representatives, transplant surgeons, recipients, their families and donor families speak of their experiences and give thanks to the donors.

(clockwise from top left) Howie Pohl, MC, Rev. Jon Overvold, Dr. Lawrence Eisenstein, Nassau Co. Health Dept., Sen. Kemp Hannon, Joy Oppedisano, LI TRIO President, Dave Rodgers, Rose Garden Director This year’s ceremony was hosted by Howie Pohl who began the proceedings by introducing the Reverend Jon Overvold for the opening invocation, followed by Dave Rodgers, the Rose Garden Director, and Joy

Transplant Profile: Melissa Brennan

The Story Continues….

The October 2016 edition of the LI TRIO Newsletter included a description of the six-person transplant chain which resulted in Melissa Brennan receiving a kidney from an altruistic donor. The article reported that Donna, her donor, gave a kidney because her husband had received a kidney four years earlier. Melissa learned later that her donor’s husband was already in a chain and his sister donated a kidney for him in that chain. So her donor Donna did not need to give a kidney to anyone and decided to anyway. She is a true altruistic donor.

LONG ISLAND TRIO DECEMBER 2016

Oppedisano, Long Island TRIO President. They were followed by Dr. Lawrence Eisenstein, the Nassau County Commissioner of Health, Senator Kemp Hannon, Chairman of the Senate Health Committee and longtime advocate on behalf of organ donation legislation, Julia Rivera, Communications Director of LiveOnNY, and Dr. Frank Darras, Clinical Director of Renal Transplant at Stony Brook University Hospital.

(from top left by rows) Julia Rivera, LiveOnNY, Dr. Frank Darras, Stony Brook Hospital, Gillian Cohen, liver recipient, Helena McDermott, kidney recipient from her sister, Megan Ryan, donor sister, Jeff Fenn, kidney recipient, Jesse Rosen, living donor for his mother, Rose Garden memorial plaques, Brian Gabay, recipient’s son, won house for donor All would agree that the most moving part of the Rose Garden Ceremony arrives when the recipients, donor family members, and living donors tell their remarkable stories. Gillian Cohen received a liver transplant at age 7 and is now attending college. Helena McDermott has had two beautiful children following her kidney transplant, received from her sister, who has also had a child. Megan Ryan told of her brother Terrance's Gift of Life. Jeff Fenn, a three-time kidney recipient, and coordinator of LI TRIO's School Speaker Program, spoke of his journey. Jesse Rosen shared a portion of his liver with his mother in December of last year. Brian Gabay won a house for the woman who saved his father's life by donating a kidney on the TV show Home Free with Tim Tebow.

All of the speakers received a Certificate of Appreciation from the Nassau County Department of Health. Then Joy Oppedisano read the names of donors and family members stepped up to receive a rose and rosemary. After this solemn moment, the entire audience retreated to the picnic area where they were treated to pizza and where all jointly celebrated the Gift of Life.

Spread the Word Join the School Speakers Program

Jeff Fenn, School Speaker Coordinator, submitted the following: Long Island TRIO School Speakers Team is looking for individuals to volunteer for our school education program in Nassau and Suffolk County high schools. We really need your help to continue this program and expand it to other schools. Whether you are a donor, transplant recipient or donor family member, by telling your story, you will leave an impression on these students that they will never forget. We also need volunteers to lead the presentations by informing students on the facts and figures related to organ donation. If you are interested in attending a program, looking to volunteer or want additional information, please contact Jeff Fenn, LI TRIO School Speaker Coordinator at litriotalks@optonline.net of call 516-382-4678.

As of November 25, 2016 there were 119,931 candidates for transplant, according to the United Network for Organ Sharing (UNOS). In New York State, there were 9,385 candidates awaiting a transplant.

As of December 25, 2016 there were 119,931 candidates for transplant, according to the United Network for Organ Sharing (UNOS). In New York State, there were 9,385 candidates awaiting a transplant.

LONG ISLAND TRIO DECEMBER 2016

Sotos Meets His Donor Family

Sotos Georghiou met a special family at the Rose Garden Rededication Ceremony described in these pages. On September 22, 2012, Sotos received a heart at Stony Brook University Hospital. The children of his donor met Sotos for the first time at the ceremony, giving even more poignancy to the event.

Heart recipient Sotos Georghiou with the DeMarinis family at the Rose

Garden Ceremony

Maintaining the Donor Rose Garden

Editor’s Note: We know the Rose Garden at Eisenhower Park due to the moving yearly ceremony held there to honor organ donors and their families. However, the Rose Garden requires constant maintenance year-round. Dave Rogers makes the Garden’s upkeep part of his regular responsibilities; Rochelle Bove and Joe Baumgartner help with the chores. Dave, slightly hobbled recently, enlisted the aid of a hearty group of volunteers to clean up the area. We thank all of them for their efforts.

Top left: (standing) Dave Rodgers, Kaitlyn Clarke, Brian Liang, Linda Clarke (kneeling) Martin Clarke Jr., Jessie Zhouhau. Top Right: Linda Clarke Bottom Left:Kaitlyn

Clarke Bottom Right: Kelly Clarke.

Celebration of the Season

The Celebration of the Season dinner and dance is one of the highlights of the year for Long Island TRIO. The Celebration brings together transplant recipients, their families and

friends, donors and donor families, transplant surgeons and their hospital staffs, organ donor support organizations, and many others in a reaffirmation of the power of transplantation and the Gift of Life. This year’s event took place at the elegant Carltun at Eisenhower Park. In addition to a fine dinner and dancing to a live DJ, a large number of prizes were won by raffle participants in a 50/50 raffle, Chinese auction, and a grand prize raffle. Many LI TRIO volunteers solicited raffle prizes from local vendors, which lined the walls of the ballroom. The photographs below give an indication of the fine times had by all who attended.

(Clockwise from left): Partygoers posed for many group shots; dancing was in order all night; Dave Rogers and his adorable grandchildren; the elegant ballroom

Photo by Sotos Georghiou

LONG ISLAND TRIO DECEMBER 2016

The intrepid raffle sellers were (left to right) Jeff Fenn, Kathy

Voigt, Dick Harrington

iJoy Oppedisano did an amazing job of organizing and hosting the Celebration.

2016 Long Island Fight for Charity The Long Island Fight for Charity took place at the Long Island Hilton in Melville on November 21, too late for inclusion in this Newsletter. The Fight is a great source of charitable donations to several worthy organizations on Long Island. Men and women from the business community volunteer to help raise funds by participating as volunteer boxers. Boxers train for months and face each other in the ring at the Fight for Charity Main Event. John Redican, “The Fighting Fiduciary,” was a friend of the late Russ Housman whose Hearts for Housman Golf Outing raised funds for Long Island TRIO. Mr. Redican is also a strong supporter of TRIO’s mission and is fighting on its behalf. With his enthusiastic support and that of Jamie Austin, one of the founders of LIFFC, Long Island TRIO was able to be at a table, providing outreach about organ donation and signing up new donors from the large crowd. He submitted the following before the Fight took place:

John Redican, a Managing Director at FIC Capital, Inc. in New York City and a member of LI-Trio, is a charity boxer for the 13th Long Island Fight for Charity, which will be held on Monday evening, November 21 at the Long Island Hilton in Melville. This action-packed

and highly anticipated event is one of the Island’s leading charity fundraising and networking events. It is expected to draw 1,200 friends, fans and sponsors. “I’ve been a member of the Long Island Fight for Charity Committee for three years,” John pointed out. “The dedication and commitment of the people involved inspired

me to give even more of my time and energy to the cause. That’s why I entered training and I am boxing in this year’s 13th Main Event. “With over $1 million donated to Long Island charities since its founding in 2003, I am proud and honored to be part of this dynamic organization. The goal for this year is to raise $200,000. “By participating in the FFC I am also setting an example for my three children. It’s a unique and physically challenging way to help raise funds for less fortunate individuals and families living in our Long Island communities.” Fight for Charity’s mission is to raise money to support local charities, including the Long Island Community Chest, The Genesis School and the National Foundation for Human Potential.

October General Meeting Two members of Total Care RX Inc. provided insights into the complexities of paying for immunosuppressive drugs. Carol Georgiades, Rph, and Janet Hopkins, RN, discussed the various health insurance plans and emphasized that it is important for transplant recipients

to know what they cover and how to overcome gaps in insurance coverage. Carol is

the lead pharmacist with Total Care Rx’s transplant team. She discussed the changes in Medicare Part D soon to take effect and cited the variations in coverage among Medigap plans, which may not pay the full 20% of coinsurance. Janet is a billing manager and works with the pharmacy’s transplant clients as a Medicare billing liaison. She emphasized the need to recertify Medicaid eligibility on a yearly basis and spoke of the EPIC plan as a means of covering insurance copayments. Both Carol and Janet

stressed the need for transplant recipients to continue to adhere to medication regiments, as non-adherence accounts for 70% of medical-related hospital readmissions. Janet advised to always take refill offers when pharmacies called in order to maintain adequate supplies of immunosuppresants.

Josh Morrison of Waitlist Zero spoke briefly about his organization’s proposals to encourage living donor kidney transplants. These include proposals to cover donors’ financial costs, guaranteed donor health

Carol Georgiades, TotalCare RX

Janet Hopkins RN with Carol and Joy Oppedisano, LI TRIO

President

Josh Morrison Waitlist Zero

LONG ISLAND TRIO DECEMBER 2016

insurance, and independent transplant education. Phoebe Kmeck , Manager of Community Programs and Volunteer Services at LiveOnNY, spoke glowingly of Long Island’s efforts to recruit organ donors on Organ Donor Enrollment Day on October 6. Once a year, transplant centers throughout New York State make a concerted effort to sign up donors. This year marked a dramatic increase in the number of hospitals and transplant centers participating and, as a result, a new record was achieved this time when 4,000 people signed up to be donors.

Phoebe Kmeck, LiveOnNY

See the report elsewhere in this Newsletter about Long Island TRIO members who served as volunteers on Organ Donor Enrollment Day and helped New York State reach new heights in achieving the Gift of Life.

Donor Sabbath in Douglaston

During National Donor Sabbath, observed annually two weekends before Thanksgiving, faith leaders from many religions, donor families, transplant recipients, and donation and transplantation professionals participate in services and programs to educate the public about the need for the lifesaving and healing gifts passed to others through transplantation, while also encouraging people to register their decision to be organ, eye and tissue donors.

(left to right): Karen Cummings, Father Bristol, Michael d'Amelio

(kidney candidate) and Maria d'Amelio, Dave Rodgers, Jeff Fenn, and Father Cunningham

This year, Long Island TRIO was invited to speak at Saint Anastasia, a beautiful church located in Douglaston. As part of all three Mass services on Sunday, the role of organ donation was discussed with the assistance of Father Cunningham, himself a kidney recipient. The event was driven by LI TRIO, particularly Mike Sosna and supported by Jeff Fenn, Walter Ruzek, Dave Rodgers, and Margie

Ng-Reilly. Mike and Margie met beforehand with Father Bristol on planning and coordination. LiveOnNY also supported the event and their Karen Cummings participated.

President’s Corner

LI TRIO's thankfulness abounds as we approach the end of the year and beginning of the next. We are grateful for the gifts of life, families that care, individuals that continue to reach out, share and touch others by giving so much of themselves. So as we move forward after our Celebration of the Season event we express appreciation to all, individuals, organizations, and corporations, who helped us celebrate, those who contributed, and each volunteer that helped the day of our get together. We have additional opportunities to come together before the year is up at a special end of the year program about self care and nutrition – be a better you in 2017. This program is also a tribute to all the caregivers out there who sometimes forget to take care of themselves. Not only caregivers but everyone will learn about healthy living tips. Sharing amongst members, and the community, has always been a key component of LI TRIO. Whether it's a personal story, expertise, or direction, each is a brilliant beacon where lives are impacted and the trajectory can be changed in a positive manner. We invite you to join us further and invite others to make a difference as well. This coming year, 2017, can be the year that we are contenders. This evening one of our members, John “the Fighting Fiduciary”, Redican, fought a boxing match to raise funds for LITRIO in memory of his friend, heart recipient Russ Housman. I could not help thinking of the irony. A 'fight' to further education related to transplantation, coupled with the very real fight for life that many, too many, experience. Thank you to new members and all who continue to make a difference. Thank you for helping make the season brighter for others and thank you for all that you do. On behalf of the Board of Directors from LI TRIO special holiday wishes to you, your family, and loved ones. Health and happiness always.

Joy Oppedisano

LI TRIO Tribute Cards

Florence Sosna has LI TRIO Donation

Tribute Cards “In Memory Of” or “In Honor Of” a loved one. You can contact Florence at 516-482-2908.

At your request, Florence will

customize, address and mail the card

to your party in honor of a loved one

and/or special occasion or in

memory of a loved one.

LONG ISLAND TRIO DECEMBER 2016

Chapter Officers

President: Joy Oppedisano

Treasurer: Walter Ruzek

Secretary: Jo Michaels

Immediate Past President: Dave Rodgers

Board of Directors: Ed Burki, Sue Dillon, Jeff Fenn, Mel Lerner, Jo

Michaels, Margie Ng-Reilly, Howie Pohl, Walter Ruzek, Florence

Sosna, Jerry Sosna, Mike Sosna

The content of this publication including text, graphics, images, and other material contained herein is for informational purposes only. The content is not intended to be a substitute for professional legal advice, tax advice, professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any medical questions you may have. LI TRIO Main Number/Hotline Jerry Sosna 516-620-5900 Welcome Committee Call Hotline Corresponding Secretary Ruth Pohl 631-884-0482 Website Design, Legislative Initiatives and Public Policy Mike.Sosna 516-620-5900 Special Projects Ed Burki 516-620-3700 Rose Garden Logistics Dave Rodgers 516-449-1421 Rose Garden Program Jo Michaels 516-798-8411 Donor Families & Social Secretary Barbara Musto 516-314-3285 Database Manager Howie Pohl 631-884-0482 School Speakers Jeff Fenn 516-382-4678 Ways and Means Committee Florence and Jerry Sosna 516-482-2908 Publicity Mel Lerner 516-484-2417

Volunteer Coordinator Joy Oppedisano 516-232-3151 Transplant Center Outreach Sue Dillon 516-223-3264

Newsletter

Howie Pohl - Editor

Address all correspondence to:

LI TRIO

PO Box 81

Garden City NY 11530

x Visit www.litrio.org for more information and

articles about transplantation.

x Become a friend of TRIO on Facebook:

https://www.facebook.com/groups/TRIOgroup/ x Call our hotline: (516) 620-5900

Long Island TRIO PO Box 81 Garden City NY 11530