Facebook Initiative Leads to Surge in Online Donor Designations

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1 VOLUME ISSUE 2... SUMMER 2012 A Quarterly Newsletter of LifeShare Of The Carolinas Facebook Initiative Leads to Surge in Online Donor Designations IN THIS ISSUE: 1 Facebook Initiative Leads to Surge in Online Donor Designations 2 Facebook Instructions 2 Stories of Hope 3 Scott s Story Waiting and Waiting 4 Donate Life Month Workplace Partnership for Life Enrollment Form 7 Donor Statistics by Hospital 8 Area DMV Award Winners 2012 Facebook 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. A Donate Life Organization

2 LifeShare Of The Carolinas GIVE Editor Debbie Gibbs Associate Editor Gary Burris FACEBOOK INSTRUCTIONS How to share that you are an organ, eye and tissue donor on Facebook 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. 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 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. educational and support services which enhance the donation process. Stories of Hope O U R V I S I O N We envision a day when the regional supply of transplantable organs and tissues will satisfy the demand. Everybody 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. 2 L I F E S H A R E O F T H E C A R O L I N A S

3 Scott s Story Waiting and Waiting IT WAS JUNE 16, 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 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 Number of Candidates on the National 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, 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. S U M M E R I S S U E

4 Donate Life Month 2 CALENDAR of events EACH YEAR DURING APRIL, LIFESHARE, AND THE DONATION COMMUNITY FROM AROUND THE COUNTRY, CELEBRATE DONATE LIFE MONTH WAS BY FAR OUR August 1, 2012 National Minority Donor Awareness Day Nationwide November 15 17, 2012 National Donor Sabbath Congregations Nationwide 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 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 Seventeen Magazine. You have the power to donate life! 4 L I F E S H A R E O F T H E C A R O L I N A S

5 2012 Our Best Ever! Top: Bobby Height, who is literally young at heart, points out the obvious. LifeShare staff members joined in on the fun flaunting their colors on Blue and Green day, May 20th. Bottom: The Duke Energy building lit up the Charlotte skyline in blue and green on April 1st. Hands-down, the LifeShare flash mob was an exciting way to kick off Donate Life Month. Just ask Cindy Cook. S U M M E R I S S U E

6 Hospitals Invited to Enroll in HRSA s Workplace Campaign 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 to boost 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 by the Health Resources and Services Administration (HRSA) on its web site and at a national meeting in October. Let life bloom. Workplace Partnership for Life (WPFL) Promoting Organ, Eye, and Tissue Donation To enroll in this campaign, please fill out this form on behalf of your organization and click submit below. Organization Type: Hospital OPO, Eye or Tissue Bank Other State Hospital Association DLA Affiliate Organization Contact Information: Organization Name: Contact Person: Phone Number: Mailing Address: C City: P State: ZIP: M How will you measure campaign results? Please check all that apply: C State: ZIP: Registry drop-down menu on Web site Registration through State DMV Registry paper forms Registry through unique URL Other (please explain): Are you enrolling any partners at this time? Yes No Currently enrolled, adding new partner(s) If yes, please use the fields below to enter partner information. If you need more space, use the attached form or send a spreadsheet to ann@akoyaonline.com. PARTNER INFORMATION a Partner #1: Contact Person: Phone Number: Title: Mailing C Address: City: T State: ZIP: M Please contact Ann Pfeifer at ann@akoyaonline.com or with any questions. SUBMIT To submit completed form, fax to C State: ZIP:

7 LifeShare gratefully acknowledges the commitment of all nurses and other medical personnel who help to further the ideals of organ and tissue donation. It is through their efforts and the generosity of donor family members that donation occurs. When comparing statistics, please note that not all hospitals have the same donor potential. D O N O R S TAT I S T I C S B Y H O S P I TA L January March 2012 Hospital Eye Organ Tissue Angel Anson Asheville Specialty Carolinas Medical Center (CMC) CMC - Lincoln CMC - Mercy CMC - NorthEast CMC - Pineville CMC - Union CMC - University Cherokee Cleveland Crawley Gaston Grace Harris Haywood Highlands-Cashiers Kings Mountain Lake Norman Mission - St. Joseph s Murphy Pardee Park Ridge Presbyterian Presbyterian Huntersville Presbyterian Matthews Presbyterian Ortho Rutherford St. Luke s Stanly Swain Transylvania Valdese VA Medical Quilt of Life 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) We look forward to receiving additional squares and to sharing the memory of your loved one with others. S U M M E R I S S U E

8 LifeShare Of The Carolinas 5000-D Airport Center Parkway Charlotte, NC Area DMV Award Winners 2012 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! 2011 Highest Rate Asheville 65.1% Mooresville 63.8% Monroe 61.9% Mt. Holly 56.0% 2011 Most Improved Brevard 61.4% Lincolnton 54.6% Concord 52.0% Polkton 50.5% Do you want to be an organ donor?