National Donate Life Month is a great opportunity for Gift of Life to spread the word about the life-saving power of organ donation, and to encourage people

CELEBRATE NATIONAL DONATE LIFE MONTH WITH Gift of Life!

in the region to register as organ and tissue donors. Gift of Life will kick-off the month with the 22nd Annual Donor Dash on Sunday, April 2nd. The following week, Donors Are Heroes is back with its fun-filled, fashionable event, THE Party, on Friday, April 7th. And, you can keep the momentum of the month going by participating in Blue and Green Day on April 21st.

GET READY TO DASH!

Members of Team Sandra’s Second Chance show their support of organ and tissue donation at the 2016 Donor Dash.

Gift of Life Donor Program Gift of Life Institute Gift of Life Family House Living Donor Ceremony Dash for Organ and Tissue Donor Awareness National Donor Sabbath It’s About Life Grants Team Philadelphia at the Transplant America Games Donor Recognition Ceremony Student Summit Donors Are Heroes THE Party Camp Jeremy Jessie’s Day Phillies Donor Awareness Game Gift of Life Donor Program Gift of Life Institute Gift of Life Family House Living Donor Ceremony Dash for Organ and Tissue Donor Awareness National Donor Sabbath It’s About Life Grants Team Philadelphia at the Transplant America Games Donor Recognition Ceremony Student Summit Donors Are Heroes THE Party Camp Jeremy Jessie’s Day Phillies Donor Awareness Game Gift of Life Donor Program Gift of Life Institute Gift of Life Family House Living Donor Ceremony Dash for Organ and Tissue Donor Awareness National Donor Sabbath It’s About Life Grants Team Philadelphia at the Transplant America Games Donor Recognition Ceremony Student Summit Donors Are Heroes THE Party Camp Jeremy Jessie’s Day Phillies Donor Awareness Game Gift of Life Donor Program Gift of Life Institute Gift of Life Family House

Volume 21 Number 1SPRING 2017

A publication of Gift of Life Donor Program, the region’s organ and tissue transplant network, serving the eastern half of Pennsylvania, southern New Jersey and Delaware.

GIFT OF LIFENeWSNon-profit Org.U.S. PostagePaidPhiladelphia, PAPermit No. 862

Living kidney donor Michelle Arnold (left) with her sister Rose Wells at the 2016 Donor Dash. Michelle donated a kidney to her sister’s husband Russell.

continued on page 2

Be a part of the movement to help save lives on Sunday, April 2, 2017 at the 22nd Annual Donor Dash. Last year, approximately 10,000 people joined Gift of Life at the Dash, and this year we’re expecting an even greater turnout! For 22 memorable years, teams and individuals have participated in the Dash to celebrate recipients’ health and honor donor families and donors – who generously gave the gift of life. The Dash is also a great excuse to get outside, get healthy and show your support of donation.

The 2017 Dash has several different options, so participants can choose their own pace – including 10K (beginning at 7:10 AM)

Registration is now open for the 22nd Annual

DONOR DASH

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National Donate Life Month events are happening across the region! Students in the Lehigh Valley are crafting essays and posters to promote organ and tissue donation. An annual poster and essay

ABOVE: Poster winners of the 2016 middle school division were (from left): third place – April Albeck, St. Thomas More School, second place – Francesca Logozzo of St. Ignatius of Loyola School, first place – Alex Hallingstad of St. Joseph the Worker School.

Lehigh Valley Coalition for Org an and Tissue Donation Hosts Student Poster Contest

Help Gift of Life Spread the Word about Donation during Blue & Green Day on April 21st

Blue and Green Day is a fun way to get involved in

National Donate Life Month. You can wear blue

and green on April 21st to promote organ and tissue

donation, and ask your friends, family and coworkers

to do the same.

Make sure to take pictures and share them on social

media with the #BlueGreenDay and tag donors1.

We all have the power to make an impact and reach

hundreds if not thousands of others through social

media. By posting a photo, sharing your passion and

encouraging people to register at donors1.org, you are

helping to save lives!

OF THE YEAR!

Angela Gianetti, Donors Are Heroes Event Management & Advisory Committee Underwriting/Vendor Co-Chair; Renee D. Freeman, Co-Founder, Donors Are Heroes; Mary Pat Kessler, living donor and Donors Are Heroes Development Co-Chair.

Register today at donordash.org.

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One of the most exciting social events in Philadelphia is turning 15!

On April 7th at the Hyatt at the Bellevue (200 South Broad Street, Philadelphia, PA 19102), Donors Are Heroes THE Party will celebrate 15 years of fashionable fun and fundraising – all in support of organ and tissue donation. THE Party begins at 8:00 PM. A VIP Party, emceed by Fox 29’s Good Day Philadelphia host Mike Jerrick, will be held before the main event.

Show your support of organ donation and buy your tickets today at

DonorsAreHeroesTheParty.com At THE Party, you can indulge in delicious food from some of the city’s best restaurants, enjoy a top-shelf open bar and dance the night away.

Since Donors Are Heroes was formed, the group has raised over $1 million for donation education. All proceeds raised through THE Party go directly towards supporting public awareness campaigns, school summits and teaching initiatives, which aim to eliminate the myths that often prevent individuals from registering.

A special thank you to THE Party’s Diamond Sponsors for their generous support: Parx Casino, The Joan and Bernard Spain Family Foundation, Cashman & Associates, and the Philadelphia Media Network.

BLUE & GREEN DAY

DASH, continued from page 1

GET READY FOR

Ericka and Shiloh Moore participated as part of Team Irene at the 2016 Donor Dash.

contest, sponsored by the Lehigh Valley Coalition for Organ and Tissue Donation, attracts hundreds of entries from middle and high school students. Winners will be honored at an awards dinner on April 6th at the Banana Factory in Bethlehem, PA.

For details, contact Susan Koomar at skoomar@donors1.org or 267-421-7958.

and 5K runs (beginning at 7:20 AM), and a 3K walk (beginning at 8:30 AM). On-site registration opens at 6:00 AM at Eakins Oval in front of the Philadelphia Museum of Art, and all events will take place along West River Drive. Back by popular demand, children six years old and under can join in on the fun and participate in a 50-yard dash, which begins at 7:45 AM. With its various course options, the Dash is a race that people of all fitness levels and ages can partake in.

The Dash began with a group of only 800 people as a result of Claire Braverman’s wish to honor her husband, Mickey, who passed away while waiting for a liver transplant. Claire wanted to turn her grief into something positive, so she organized the first-ever Dash in his memory.

Today, the Dash continues to serve as a community event geared towards bringing people together for a great cause – to have fun, raise money and help save lives!

The first place posterin the high school division for 2016, designed by Peyton Kirsch of Bethlehem Catholic High School.

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CLINICALORNER

continued inside

UNIVERSITY OF PENNSYLVANIA TESTS NEW LIVER PRESERVATION METHODThe University of Pennsylvania is participating in a trial to test a new way of preserving deceased donor livers for transplantation. The study will compare the effectiveness of storing livers at normal body temperature with the traditional, static cold storage method. To keep the liver at body temperature, it is placed on a device that circulates a warm, blood-based solution through it, providing oxygen and nutrition to the organ.

The goal of the trial is to determine if circulating warm, blood-based solution through the liver before it’s transplanted can reduce the incidence of early liver dysfunction in the recipient. Experimental data indicates that by supporting the donated liver in a machine-perfused, normothermic environment, there may be less damage to the organ’s cells in comparison to the traditional cold storage method.

The trial will utilize the OrganOx metra machine, the device that pumps the liver with the blood-based solution while it is transported from the donor hospital to the transplant center. The OrganOx’s warm preservation seeks to re-create an environment that mimics the human body by continuously perfusing the liver and providing it with nutrition. The liver is therefore functional during the preservation period, producing bile, metabolizing glucose and maintaining a physiological pH. This enables an objective assessment of the organ’s performance prior to transplant, and helps to extend liver preservation times.

The study will only include livers that cannot be transplanted and are donated for research.

344 ORGAN DONORS

208 ORGAN DONORS

23 ORGAN DONORS

BREAKS NATIONAL RECORDSIN2016

540ORGANDONORSRESULTING IN 1,412 TRANSPLANTSIN DECEMBER, Gift of Life set a national monthly record with 62 organ donors and 167 organs transplanted.

“Our record-setting year

was possible only because of

the selflessness of our donors

and their families, as well as

the exceptional commitment of

our hospital partners and staff. They truly give people

a second chance at life.”Howard M. NathanPresident and CEO

2,575 TISSUE DONORS benefitting up to 100,000 people

by improving mobility, healing burn patients, repairing life-threatening

heart defects and giving the gift of sight with 4,500 corneas.

FIRST TO REACH AND EXCEED 500 ORGAN DONORS

IN ONE YEAR

1974

1994

2004

2016

Thank you to everyone who helped make 2016 a remarkable year for Gift of Life Donor Program! Every day, Gift of Life is grateful for the generosity of donors and donor families, and the expertise and commitment of its hospital partners that ensure donation and transplantation occur.

For the ninth year in a row, Gift of Life announced that it was the nation’s leading OPO with its successful coordination of life-saving organs from 540 organ donors, whose generous gifts resulted in 1,412 organs transplanted. This milestone is the first time an OPO has achieved this level of donation (over 500 organ donors) in the history of organ donation and transplantation.

Gift of Life also recovered tissue from 2,575 donors in 2016. These life-saving and life-enhancing donations may benefit up to 100,000 people, with 1,305 bone donations to improve mobility, skin donations to heal burn patients and heart valve donations to repair life-threatening defects. Those donors also provided 4,500 corneas that gave the gift of sight.

With ongoing advancement in transplantation, the need for donation continues to grow. Approximately 22 people die each day in the U.S. while waiting for an organ transplant. Currently, there are more than 5,400 men, women and children waiting in the region, and over 118,000 nationally – showing that Gift of Life’s work is far from finished.

“Gift of Life’s record-setting year is possible

only because of the selflessness of our

donors and their families. Their strength and

compassion in the face of often unimaginable

grief is humbling.”

—Howard M. Nathan, President & CEO, Gift of Life Donor Program

Double Hand Transplant Recipient

Zion Harvey Rides on Donate Life Float at the 128th Rose Parade It was a chilly morning in Pasadena, CA on Monday, January 2, 2017, but that didn’t stop the more than 700,000 devoted fans of the Rose Parade from coming out. As spectators filled the streets, Zion Harvey, 9, a double hand transplant recipient, rode on the Donate Life America float and waved to spectators with a huge smile on his face. Zion’s mother, Patti Ray, walked alongside the float as a proud living kidney donor. Patti Ray donated a kidney to Zion when he was just four years old.

For the past 14 years, the Donate Life Float has celebrated the far-reaching effects of organ and tissue donation and transplanta-tion, and has been one of the most popular floats in the parade. The 2017 Donate Life float theme was “Teammates in Life,” and stressed the importance of working together to save lives. The float depicted a spectacular Polynesian catamaran that was propelled by Zion, along with a team of 23 organ, eye, and tissue transplant recipients – rowing in unison with strength gained from their donors. The float for Donate Life America is supported by more than 50 organizations from across the U.S. Gift of Life sponsored Zion and Patti Ray’s participation.

Zion was the first child in the world to receive a double hand transplant in 2015, when surgeons from Children’s Hospital of Philadelphia (CHOP), Penn Medicine and Shriners Hospitals for Children – Philadelphia joined to complete this innovative transplant. At the age of two, Zion developed sepsis, a life-threatening infection that attacked his entire body, and caused both of his hands and legs below the knee to be amputated. The infection also damaged his kidneys, which required him to receive a life-saving kidney transplant.

To see more pictures of the spectacular float, visit facebook.com/Donors1/.

ABOVE: Double hand transplant recipient Zion Harvey is all smiles as he rides on the Donate Life float.

RIGHT: Zion’s mother, Patti Ray, walked alongside the float as a living kidney donor.

GIFT OF LIFE DONOR PROGRAM Breaks U.S. Record for Organ Donation

Burn Victim Shares Story of Perseverance and Gratitude

for TISSUE DONATION

how to sit up, stand, walk and talk. She was told she would never run again, but her fighting spirit has allowed her to not only run, but to compete in the Ironman World Championships, in addition to many other marathon events. Today, she travels the world as a motivational speaker and author, promoting organ and tissue donation.

For more information on Turia, visit turiapitt.com.

On Tuesday, December 20th, Gift of Life welcomed acclaimed speaker, elite athlete, author, mining engineer and former model Turia Pitt. Turia is a survivor who was burned on over 65 percent of her body when a firestorm trapped her while she was competing in an ultra-marathon in Australia. Doctors didn’t think she would survive. She was in a coma for the first month after the fire and spent six months in rehabilitation.

Australian physicians struggled to save her life and knew that she needed donor skin grafts. Since none were available at that time in Australia, her doctors were able to secure tissue donations from 16 Americans. The generosity of these donors, including donors from Gift of Life’s region, helped save Turia’s life.

She shared her inspirational story of strength and gratitude for the life-saving and health-restoring gifts of tissue donation with Gift of Life staff and local media that covered the event. She was also able to meet two Gift of Life staff members, Toni Umberger and Joshua Bulgrien, who recovered the tissue donations that saved her life.

To date, Turia has had over 200 operations and skin grafts. During her courageous struggle to get her life back, she had to relearn

ABOVE L-R: Turia Pitt finishing the Ironman World Championships. Gift of Life staff members Joshua Bulgrien and Toni Umberger, pictured with Turia Pitt (center).

The Summit’s theme was “The Big Picture: Turning Passion into Action.” It was a great opportunity for volunteers to hear Gift of Life’s strategic goals for 2017, and how they can play a part in reaching them. There were several breakout sessions that allowed volunteers to brainstorm about how to make their engagement opportunities with the public more meaningful and effective. They were also asked to contribute to the process by creating personal volunteering goals and action steps to achieve them. Through teamwork and planning, our volunteers are poised to register even more organ and tissue donors in 2017!

If you’d like to help save lives, volunteer with Gift of Life! Contact Rashida Brooks at rbrooks@donors1.org for more information.

by Wanda Griffith, Heart Recipient

What a journey it has been. In 1995 at

the age of 29, I was diagnosed with

heart disease. My heart was so large

and ill that doctors didn’t think I’d live

more than six months. But I proved

them wrong. After 15 years of living

with physical limitations and a ton

of medications, my heart finally had

enough and began to quickly decline.

I was placed on the transplant waitlist

one week after my 45th birthday full

of hope. My faith carried me through,

and 20 days later I was blessed with

the ultimate gift – a heart transplant.

A gift I can never repay.

As the mother of a then 17-year-old daughter, I couldn’t fathom the

loss my donor family still feels today. I think of them daily, and am

grateful beyond words. Their generosity in their time of loss has given

me a journey that I never thought was possible.

In the six years since my transplant, I have watched my daughter

graduate from high school, checked her into college, moved her into

her own home and shared the joy of her engagement to the man of

her dreams. I’ve been able to share her milestones because of the

selflessness of my donor family, and I get to look forward to watching

her become a wife and mother.

Since my transplant, I married my high school sweetheart and gained

a wonderful stepson. Life makes its twists and turns at just the right

moment. Fate brought us together once again, and I get to grow old

with my best friend because of the generosity of my donor family.

My dreams with my husband, daughter and stepson were only the start

of my transplant journey. My past came full circle when I was able to

meet a son who I had given up for adoption when I was a child myself.

My pre-transplant promise to myself was that I was going to live to see

my parents grow old, my siblings be happy, my daughter graduate and

grow, and to finally meet my son. I not only get to have a relationship

with him and his three children, but I get to enjoy life with my heart finally

healed and full. A simple thank you doesn’t seem to be enough. I honor

my donor family daily by living each day to the fullest with them in my

thoughts and prayers.

Wanda with her husband Gary.

continued from other side

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Save the date for the 13th Annual Camp Jeremy, taking place at Mermaid Country Day Camp from July 17th - July 21st. Camp Jeremy welcomes transplant recipients and their siblings, ages 5-17, to come together for some much deserved summer fun. Camp Jeremy offers campers a huge swimming pool with water slides, tennis courts, archery, a ropes course and much more!

Call Karen Keener at 215-557-8090 for more information and to sign up!

Since 2011, Gift of Life’s Family Support Services has provided donor families with recognition displays for them to proudly showcase at the funeral of their loved one. These meaningful displays honor the generous gifts that the donor has given, and include Donate Life pins and bracelets, information about organ donation and a personalized certificate honoring the donor’s gifts.

Gift of Life cherishes its donor families and is proud to provide them with the resources to honor their loved one and to celebrate the life they have given to others. The displays not only highlight the donor’s legacy of caring, but they also help others understand the life-saving power of donation and may encourage them to register. Gift of Life, with the additional support of The Musculoskeletal Transplant Foundation and Community Tissue Services, has been able to provide more than 10,000 kits to donor families in the region over the past five years.

Volunteers are the backbone of Gift of Life Donor Program’s outreach. Organ transplant recipients, individuals waiting, donor families, living donors and advocates sharing their personal stories in the community or online is what often encourages others to register as organ and tissue donors. As a thank you and to celebrate the success of 2016, Gift of Life brought together more than 50 of its valued volunteers for the Volunteer Leadership Summit, held on Saturday, January 28th.

Peter Abt, MD, the principal investigator for the trial at Penn said,

“The trial is an exciting first step in demonstrating the potential benefits of this technology. Donor organs have a wide degree of quality, related to the underlying health of the donor and the consequences of the patient’s brain injury prior to their death.”

Dr. Abt shared his hopes that in the future this technology will allow reconditioning and viability assessment of currently non-transplantable organs, so they can be transplanted and save more lives.

UPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATEUPDATE UPDATE UPDATE UPDATE UPDATE

Pennsylvania has waited

too long! For the past two

legislative sessions, the

Donate Life PA Act has

been passed by the Senate, but has not received

a vote in the House. Pennsylvania deserves better.

This is the message we have brought to Harrisburg

every session day in 2017. Dwendy Johnson,

Community Relations Supervisor, and a team of

volunteers are in the Capitol Rotunda each session

day to remind legislators that we need action now.

You can help us keep the pressure on in Harrisburg.

Telephone calls from constituents are incredibly

meaningful to elected officials. So please call your

state Representative and Senator and ask them to

support the Donate Life PA Act.

Visit www.SaveALifeNowPA.org

for more information and to find your legislator’s

contact information. Together we can pass this bill.

Together we can save lives.

DONATE LIFE PA ACT

UPDATE

Don’t Miss Camp Jeremy THIS SUMMER!

“It has been great to volunteer with Gift of Life and meet organ transplant recipients. Seeing how grateful and healthy they are has really helped me.”

—Tom Gano, Donor Father

“Volunteering allows me to return the blessing that I received ten years ago, when a complete stranger saved my life by donating lungs to me. My hope is that I touch someone’s life with my story, so they register to be an organ donor.”

—Kathi Clapham, Double Lung Recipient

“I started volunteering after my heart transplant because I wanted to know more about how the transplant world worked. There is still a lot to be done to get the word out.”

—LaVerne Clark, Heart Recipient

“Having these materials opened up the conversation about organ donation for many of our friends and family. Every person who paid their respect that morning knew that in his death, Chuck was still thinking of others. In life, Chuck was our hero and we could not be more proud that he was able to be a donor.”

—Annette Livecchi, Donor Wife

Family Support Services Helps Families Honor the Gift of Donation through

Funeral Recognition Displays

Gift of Life Volunteers Turn Their Passion Into Action

Black History Month is an annual celebration that recognizes the achievements of African Americans in history and in our communi-ties. In February, Gift of Life shared the touching stories of many African American donors and recipients, like Randolph Rahming, on its donors1.org blog.

Randolph Rahming has always been an athlete. His love of track and field dominated much of his life. Nearly every day, the Bahamas native ran three to five miles to stay healthy. He saw many of his family members suffer from heart disease, and wanted to keep his heart as strong as possible, for as long as possible.

Randolph’s mother died at 61 from heart disease, and his 35-year-old brother

also passed away from the genetic heart mutation. In total, nearly ten of his close relatives were affected by heart issues, which encouraged him to stay fit and get regular checkups. He success fully maintained his health until his late 30s, when doctors noticed that his heart was larger than normal. Shortly after, Randolph needed to have a defibrillator and pacemaker implanted in his chest.

In 2014, he realized that something was wrong. “My heart just gave up, and I was in heart failure. I couldn’t walk and wasn’t able to make it up the stairs.” he said. He spent 29 days in the hospital until he received the gift of life, a new heart.

Today, Randolph doesn’t have any limitations and takes very few medications. He’s a devoted father and has energy that allows him to live the life he wants to. “My life after my transplant was like night to day. Getting a heart transplant was like walking out of the fog and coming into the sunlight.” he said.

Gift of Life staff and volunteers take a moment to pose for a picture at the 2017 Volunteer Leadership Summit.

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Black History Month Profile:Randolph RahmingHeart Transplant Recipient

Peter L. Abt, MD, Surgeon, Associate Professor of Surgery at the Hospital of the University of Pennsylvania and the Children's Hospital of Philadelphia.

Randolph and his wife LaShonda.