A Quarterly Newsletter of LifeShare Of The Carolinas

VOLUME 15

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ISSUE 2

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SUMMER 2012

IN THIS ISSUE:

1 Facebook Initiative Leadsto Surge in Online DonorDesignations

2 Facebook Instructions

2 Stories of Hope

3 Scott’s Story—Waiting and Waiting

4 Donate Life Month 2012

6 Workplace Partnership forLife Enrollment Form

7 Donor Statistics byHospital

8 Area DMV AwardWinners 2012

A Donate Life Organization

Facebook Initiative Leads to Surgein Online Donor DesignationsFacebook users can now share their decision to be an organ, eye and tissue donor

through their Timelines. In an exclusive interview with Robin Roberts on “Good

Morning America,” Facebook CEO Mark Zuckerberg announced the collaboration

with Donate Life America and became one of the first to sign up to donate on the

social network he founded.

The upgrade to the Facebook Timeline structure allows users to check their organ

donor status and then to share it with members of their network. “Thousands of lives

will be saved or healed as a result of this initiative,” said David Fleming, President

and CEO of Donate Life America.

“We want to encourage every Facebook user to take a moment and update their

Timeline, register to be a donor, and share their decision with family and friends. It

is a simple way to provide hope for those in need,” he said.

The partnership between Facebook and Donate Life America signifies a giant step

for the donation community, bringing major exposure to the need for more donors

and providing hope for the approximately114,000 individuals on the transplant

waiting list.

Since the initiative was announced, donor registries across the country have

experienced dramatic increases. Forty-six state registries reported 33,406 online

donor designations in the first six days of the Facebook initiative, more than ten

times typical enrollment activity which averages 548 per day.

The North Carolina Donor Registry followed the national trend. On an average

day, 18 donor registrations at donatelifenc.org are recorded. Since the Facebook

Timeline feature was added on May 1st, there were 1,287

online registrations through midnight on May 8th,

more than the total number registered in

March and April combined.

While we are really excited about the

new venture, LifeShare is still encouraging

every Facebook user to say “yes” at the

DMV where 95% of the state’s donors are

signed-up. The NC donor registry is the

only one that is legally binding in North

Carolina and the only one that we check

when someone has died and donation

becomes an option.

2 L I F E S H A R E O F T H E C A R O L I N A S

LifeShareOf The Carolinas

1-800-932-GIVE

www.lifesharecarolinas.org

Editor

Debbie Gibbs

Associate Editor

Gary Burris

O U R M I S S I O N

To improve the quality of human

life through the provision of organs

and tissues for transplantation and

to serve our hospitals and their

respective communities by providing

educational and support services

which enhance the donation process.

OU R V I S I O N

We envision a day when the regional

supply of transplantable organs

and tissues will satisfy the demand.

How to share that you are an organ,eye and tissue donor on Facebook

FACEBOOK INSTRUCTIONS—

Go to your Timeline

Click on “Life Event”

Select “Health and Wellness” and Choose “Organ Donor.”

You can add where and when you registered.

Add your personal story.

If you have not officially registered through the DMV, you can:

Select the link “Officially Register” from the right hand side of the dialog box.

A new tab will open with instructions on how to officially register.

Privacy Settings

�Remember you can always control who you share your donor status with.

To select who can see your donor status, click on the “Privacy Control.”

You can make it public or limit it to just a small group of friends or just family.

When you are done:

Select “Save.”

Your organ donor status will appear both on your Timeline and in your “About” section.

Other Useful Information:

If a friend has added their donor status to their Timeline, you can see it in your

Newsfeed. You can add your donor status to your Timeline from there by clicking

“Share your organ donor status.”

Stories of HopeEverybody has a story. There are thousands told each day by people like Scott and

Mariel Carr of Huntersville. Scott is on the waiting list for a liver transplant. He’s one

of 16,000 individuals nationwide in need of a new liver whose life hangs in the balance

while he and his family wait for his number to be called.

The Carr’s were originally featured in late May by Donate Life America as part of

its “I am HOPE” story project. In fact, seven individuals/families were selected by

Donate Life North Carolina for the honor. In addition to the Carr’s, there were three

additional people from the LifeShare area—Melissa McDaniel, a tissue recipient,

Bobby Height, a heart transplant recipient and his wife, Brenda.

While we don’t normally feature stories of people who are waiting for a transplant,

we made an exception for the Carr’s to put a face on the waiting list. Their story is

featured on the next page.

3

Number of Candidates on theNational Transplant Waiting List

Kidney 92,258

Liver 16,107

Pancreas 1,268

Kidney-Pancreas 2,154

Heart 3,191

Lung 1,651

Heart-Lung 53

Intestine 265

NATIONAL TOTAL 114,247

North Carolina 3,584

South Carolina 990

Based on OPTN data as of May 11, 2012.

S U M M E R I S S U E – 2 0 1 2

Scott’s Story—Waiting and WaitingIT WAS JUNE 16, 1998. WE WERE HEALTHY 32 YEAR OLDS AND EXPECTING OUR FIRST

BABY. ALL OUR THOUGHTS AND ENERGIES WERE PREPARING FOR THE NEXT PHASE

OF OUR LIVES... A FAMILY! FROM OUT OF NOWHERE, SCOTT HAD A SERIOUS

STOMACH BLEED CAUSED BY AN UNDETECTED AUTO-IMMUNE LIVER DISEASE, THE

SAME ONE THAT WOULD EVENTUALLY TAKE WALTER PAYTON’S LIFE.

We were shocked, especially when the doctors said Scott would likely need a life-saving

liver transplant surgery one day. Transplant?! Such a scary word for such a young man!

We had worked so hard to plan our life just right, including relocating to beautiful

North Carolina to start our family’s new roots! We would give anything to regain that

blissful ignorance of the day before June 16, when life was simply looking forward to

going to the hospital, to the Labor and Delivery wing, that is. A transplant is a “club”

no one wants to be in.

Scott thankfully rebounded

and we welcomed our second

and third baby within 3 short

years, but always with a declining

liver condition looming on our

minds. A transplant would be

Scott’s permanent fix, as medicine

could only stabilize Scott for so

long. Alas, we prayed modern

medicine would somehow spare

Scott from that big surgery, while

at minimum, allowing our children to grow up and develop a relationship with him, to

really know him, just in case.

It was July 26, 2007 and again, from out of nowhere, Scott suffered another massive

stomach hemorrhage. After 18 days in ICU requiring 3 stent surgeries, each carrying

a 30% mortality rate, and needing 25 blood transfusions, Scott finally recovered, but

it was apparent that he was in the end stage of liver failure, and this warranted Scott

going on the transplant list.

It is now May 2012. Scott is 46 years old, though sometimes he feels like he is 86.

Our kids are 11, 12 and 13. It’s been nearly 5 years on The List and we are still waiting.

Waiting to feel better. Waiting to resume our lives with full vigor. Waiting for the kids

to really, really know their Dad. They don’t remember him well and active anymore,

only sick and tired. Organ donation doesn’t just save lives. It saves families.

BY MARIEL AND SCOTT CARR

The remaining North Carolina stories featured individuals from Charlotte, Durham,

Granite Falls, Greenville and Pfafftown, NC. If you missed them, you can still see them

online on the LifeShare and Donate Life NC web sites.

4 L I F E S H A R E O F T H E C A R O L I N A SYou have t

he power to donate life!

CALENDARof events

August 1, 2012National Minority Donor

Awareness Day

Nationwide

November 15–17, 2012National Donor Sabbath

Congregations Nationwide

EACH YEAR DURING APRIL, LIFESHARE, AND THE DONATION COMMUNITY FROM

AROUND THE COUNTRY, CELEBRATE DONATE LIFE MONTH. 2012 WAS BY FAR OUR

BUSIEST YEAR EVER WITH EVENTS AND PROMOTIONS TAKING PLACE ACROSS THE

REGION, FROM ASHEVILLE TO CHARLOTTE.

We actually kicked the Donate Life Month celebration off early in late March with a

Flash Mob in downtown Charlotte. About 60 members of our staff, volunteers, donor

families and transplant recipients gathered at the EpiCenter, a local hotspot, to

dance to “Your Love Has Lifted Me Higher” by Jackie Wilson. If you missed it, videos

of everyone having a great time have been placed on YouTube and our Facebook page.

LifeShare staff was very busy at the 40 hospitals in our region raising donor awareness

for hospital staff and visitors. Donate Life flags were flown in front of many of our

hospital partners and several of the larger hospitals had donor tables set up to allow

people to register as donors but also to stress the importance of our partnership with

their staff.

The official colors of Donate Life, blue and green, were on proud display in April.

The Duke Energy building in downtown Charlotte was aglow in blue and green on

April first. Later on April 20th, newscasters from Charlotte’s WBTV, Fox 18, WCNC 36,

Time Warner’s News 14 and Asheville’s WLOS 13 flaunted our colors as they wore

blue and green scarves and neckties during their broadcasts.

Several businesses and local governments got in on the act of promoting organ

and tissue donation too. Jiffy Lube stores across the region and the Original House of

Pancakes ran promotions. Cabarrus county and the cities of Kannapolis and Indian

Trail issued proclamations honoring National Donate Life Month.

LifeShare closed out the month with its annual Donor Family Ceremonies at the

Charlotte Motor Speedway’s Speedway Club and at Asheville’s First Baptist Church.

These nights were celebrations of the lives of the many organ and tissue donors that

made a difference in so many people’s lives. That’s really what National Donate Life

Month is all about.

BY BEN MARTIN

Donate Life Month 2

Did you know...

“Modern Family” star

Sarah Hyland had a

special Donate Life

Month observance? The

young actress received

a new kidney in April

courtesy of her dad.

Read about it in the

May 22nd issue of

“Seventeen” Magazine.

5S U M M E R I S S U E – 2 0 1 2

2012 — Our Best Ever!Top: Bobby Height, who is literally young at heart, points out theobvious. LifeShare staff members joined in on the fun flaunting theircolors on Blue and Green day, May 20th.

Bottom: The Duke Energy building lit up the Charlotte skyline in blueand green on April 1st. Hands-down, the LifeShare flash mob was an

exciting way to kick off Donate Life Month. Just ask Cindy Cook.

Partner #1:

Contact Person: Title:

Phone Number: Email:

Mailing Address:

City: State: ZIP:

PARTNER INFORMATION

Organization Contact Information:

Organization Name:

Contact Person:

Phone Number: Email:

Mailing Address:

City: State: ZIP:

Organization Type:

Hospital OPO, Eye or Tissue Bank Other _____________________________

State Hospital Association DLA Af�liate

How will you measure campaign results? Please check all that apply:

Registry drop-down menu on Web site

Registry paper forms

Registration through State DMV

Registry through unique URL

Are you enrolling any partners at this time?

Yes No Currently enrolled, adding new partner(s)

If yes, please use the �elds below to enter partner information. If you need more space, use the attached form or send a spreadsheet to ann@akoyaonline.com.

Other (please explain): _________________________________________________________________________________________________________

To enroll in this campaign, please fill out this form on behalf of your organization and click “submit” below.

Workplace Partnership for Life (WPFL)

Promoting Organ, Eye, and Tissue DonationLet life bloom.

C T

Email:

M

C State: ZIP:

C

P Email:

M

C State: ZIP:

_____________________________

a

Please contact Ann Pfeifer at ann@akoyaonline.com or 412-481-9800 with any questions. To submit completed form, fax to 412-432-1307.SUBMIT

In his National Donate Life Month proclamation, President Obama called on “health care professionals, volunteers,educators, government agencies, faith-based and community groups, and private organizations to join forces toboost the number of organ and tissue donors throughout our nation.” A letter from the North Carolina Hospital Association has been sent to all of its members urging them to

join the Workplace Partnership Program. Hospitals that have enrolled by June 30, 2012, will be recognized bythe Health Resources and Services Administration (HRSA) on its web site and at a national meeting in October.

Hospitals Invited to Enroll in HRSA’s Workplace Campaign

S U M M E R I S S U E – 2 0 1 2

LifeShare is pleased to offer

donor family members a

special way to remember

their loved ones—through

our memorial quilts, the

Quilts of Life.

We display the quilts in our

office and at special events

designed to promote organ

and tissue donation. Squares

are added to the quilts at

least once a year, usually in

the spring in time for

National Organ and Tissue

Donation Awareness Month.

If you would like to add a

square in memory of your

loved one, visit our web site

at lifesharecarolinas.org for

size dimensions, a release

form and other details. You

may also call us for additional

information at (704) 512-3303.

We look forward to receiving

additional squares and to

sharing the memory of your

loved one with others.

LifeShare gratefully acknowledges the commitment of all nurses and other medicalpersonnel who help to further the ideals of organ and tissue donation. It is throughtheir efforts and the generosity of donor family members that donation occurs. Whencomparing statistics, please note that not all hospitals have the same donor potential.

DONOR S TAT I S T I C S BY HOSP I TA L

January–March 2012

Hospital Eye Organ Tissue

Angel 3 0 2

Anson 0 0 0

Asheville Specialty 0 0 0

Carolinas Medical Center (CMC) 36 15 28

CMC - Lincoln 3 0 3

CMC - Mercy 1 0 0

CMC - NorthEast 10 1 9

CMC - Pineville 5 0 3

CMC - Union 6 0 5

CMC - University 0 0 0

Cherokee 0 0 0

Cleveland 3 0 3

Crawley 0 0 0

Gaston 10 2 7

Grace 2 0 1

Harris 1 0 1

Haywood 7 0 4

Highlands-Cashiers 0 0 0

Kings Mountain 1 0 1

Lake Norman 2 0 0

Mission - St. Joseph’s 19 9 16

Murphy 3 0 2

Pardee 4 0 1

Park Ridge 1 0 0

Presbyterian 8 3 8

Presbyterian Huntersville 1 0 1

Presbyterian Matthews 2 0 1

Presbyterian Ortho 0 0 0

Rutherford 2 0 0

St. Luke’s 0 0 0

Stanly 4 0 3

Swain 1 0 1

Transylvania 1 0 0

Valdese 1 0 1

VA Medical 0 0 0

7

Quiltof Life

LifeShareOf The Carolinas

5000-D Airport Center ParkwayCharlotte, NC 28208

Each year, 99% of North Carolina residents who join the state’s organ donor registry

do so at the North Carolina Division of Motor Vehicles (DMV). In recognition of their

efforts, the offices with the highest donation rates were presented with awards from

Donate Life NC. Those that were the most improved got them too.

The DMV office in Boone was number one for the second year in a row with 69.6%

of drivers and state ID holders designating themselves as donors. Asheville was the

repeat winner in our region. We’d like to take this opportunity to recognize the winning

offices and to thank all DMV employees who ask the question over and over each

day, “Do you want to be an organ donor?”

The next time you see a DMV examiner, take a minute to thank them for their role

in saving lives. Thank you to all of the DMV Ambassadors who took time from their

schedules to make quarterly visits to the offices. We appreciate you!

Area DMV Award Winners 20122011 Highest RateAsheville 65.1%

Mooresville 63.8%

Monroe 61.9%

Mt. Holly 56.0%

2011 Most ImprovedBrevard 61.4%

Lincolnton 54.6%

Concord 52.0%

Polkton 50.5%

“Do you want to be an organ donor?”