Florida’s Donation Proclamation

Touched by the personal request from a Jacksonville kidney and pancreas recipient, Governor Ron DeSantis signed a proclamation declaring April as National Donate Life Month in the Sunshine State. In issuing the proclamation, the governor encouraged raising awareness about organ and tissue donation.

“We are so proud that one of our own North Florida transplant recipients is the person behind this proclamation, “ said Danielle Balbis, Executive-Director of LifeQuest Organ Recovery Services, the Organ Procurement Organization that serves North Florida. “Kimberly Clayton took the time to bring this to the governor’s attention. She knows that more attention means more registered donors and more lives saved.”

That attention included news media coverage, including this report on Fox 30 Action News Jax.

Each year, Donate Life America leads an observance of National Donate Life Month. Many states lend support by officially proclaiming that Donate Life Month will be observed within their boundaries. Prior to Kimberly Clayton’s request to Governor DeSantis, Florida was not among the states that recognize Donate Life Month. Because of her actions, that’s changed.

Transplant Recipient Kimberly Clayton

“I know how blessed I am to have received the gift of life, and I want to do all I can to help others who are waiting right now,” said Kimberly Clayton. Clayton is a certified Nurse Practitioner who volunteers with LifeQuest Organ Recovery Services to increase support for organ donation. “I was so excited when Governor DeSantis agreed to issue the proclamation but am not stopping there. I am contacting the remaining states who do not proclaim their support for Donate Life Month and ask them to do so.”

Kimberly two days after her transplant surgery

There are 10.6 million Florida residents registered to be organ donors, making Florida’s Joshua Abbott Organ and Tissue Donor Registry the nation’s third largest.  Donate Life Florida is currently supporting legislation in Florida’s House and Senate for a Donate Life Florida specialty license plate that would also help increase awareness of the need for organ donors.

“While our numbers of registered donors are up overall, there is still work to be done,” said Christopher Carroll, Executive Director of Donate Life Florida. “The need for transplant surgeries continues to grow. Each day in our nation, about 20 patients on the waiting list pass away because there are not enough organ donors to meet the need. Some of those patients lost are here in Florida. We want to do all we can to save lives. We thank the governor for the proclamation and ask lawmakers to support license plate legislation. We believe it will make a difference.”

Registering as an organ and tissue donor is easy and can take place when residents get or renew their driver licenses or can be completed online at DonateLifeFlorida.org. With nearly 114,000 men, women and children nationwide on the donor waiting list, the need could not be greater. Kimberly Clayton asks everyone to register and to join her in encouraging others to do the same.

“All my actions are intended to help those who are waiting and to honor the donor who saved my life,” Kimberly said. “I will continue doing that for the rest of my life.”

To see more of Kimberly Clayton’s story of receiving the gift of life, watch her video story.

Phi Beta Sigma

April 10, 2019: It was a simple yes or no question.

“Are you an organ donor?” I asked at a recent seminar about why African-Americans are reluctant to donate their organs.

A few of FAMU’s Phi Beta Sigma Fraternity brothers proudly raised their hands to show they had joined the registry when renewing their driver licenses or by signing up online. Many shifted their eyes toward the floor or shook their head no.

Then came the familiar fallacies. Rich and famous people get organs faster. Somebody could take my organs and sell them on the black market. Doctors don not try to save people who have “organ donor” on their licenses.

“When you are sick or injured in a hospital, the only priority is to save your life,” I assured them.

Lillian Spell at FAMU

Matches are made based on compatibility, and donation is not a possibility until all life-saving methods have failed. Beyond that, the medical team that is assigned to recover organs is different from the team that attends in the emergency room. Not to mention, the complexity of the organ transplantation process makes a black-market scenario virtually impossible.

These are facts. But it is easy to ignore facts when fear takes hold.

Studies show deep-rooted cultural myths and lack of specific knowledge are real barriers to registering African-American as organ donors. Changing attitudes requires re-educating people of color by addressing their concerns honestly and without judgement. Many African-Americans are embarrassed or afraid to ask questions that reveal how high the stakes are for their own community.

There are 115,000 people on the waiting list for an organ in the United States, and approximately 30 % of them are black. Yet minorities comprise only a quarter of registered organ donors today. Distrust of the American healthcare system is a leading cause cited by many African-Americans who refuse to register.

Assemblies like the one held at FAMU offer anecdotal evidence that attitudes may be changing, albeit rather slowly. Important dialogue is taking place in person and online. For example, LifeQuest was invited to speak on campus after a debate about organ donation erupted spontaneously on Twitter.

It will take more than casual conversation and statistics to change the attitudes of African-Americans. Because church and family members influence the decision-making process, leaders of the black community must step up and be catalysts for change before distrust turns to paranoia.

Like many African-Americans, Lillian Spell opposed organ donation until coming face to face with the process. Three years ago her nephew, Eljay, became a donor. Now she serves as a LifeQuest volunteer and organ donor advocate.

“Eljay’s my hero,” Spell said, fighting back tears. “Even an old pro like me gets choked up.”

Respectfully, the room fell silent. Most were fighting back their own tears. Then LifeQuest hospital services coordinator Janet Shipman stepped in.

“It’s easy to sign up to be a donor,” said Shipman, a tissue recipient, whose father also received a kidney transplant. “Just pull out your iPhone if you have one.”

When all was said and done, there were hugs, thank yous, and a group picture. One young man asked where he could learn more. I directed him to LifeQuestFla.org and DonateLifeFlorida.org. He thanked me and walked out.

At least one mind, one heart, opened to the possibility of becoming an organ donor.

 

High School Outreach

November 19, 2018:  High schools are at the forefront of organ donor education, and engaging students is an important part of LifeQuest’s mission to give every individual the option to donate. Connecting with teenagers on their turf brings context to the overall conversation and generally has a positive effect. Classroom visits also result in a better opportunity for connection, communication and collaboration with teachers and students. What’s more, high school outreach creates an opportunity to arm teenagers with facts so that they can make well-informed decisions about whether to donate, not impulsive ones.

Dewayne Purifoy and Lillian Spell at Godby High School

The idea of organ donation can be scary and confusing to young people who may be misinformed or unaware. Myths about the process may discourage them from registering to donate the life-saving gifts of their organs. By partnering with schools, we can move beyond false public perceptions. Talking to teenagers directly builds trust and provides a chance to answer individual questions and concerns. On occasion, organ recipients and donor family members come along to share powerful stories of hope that help bridge the gap between misconception and reality.

Why talk to teenagers? By law, the Florida Department of Highway Safety and Motor Vehicles (DHSMV) is required to ask anyone applying for a learner permit or driver license if they want to join the organ and tissue donor registry. This includes 15-, 16- and 17-year-olds. The idea is to give teens the autonomy to make their own decision. Many consider it an honor to register as an organ donor on their road to independence, even if a parent or guardian still must give permission in the event of a tragedy. Signing up to be a donor can start an important conversation at home and elsewhere.

Having spent time in the classroom, it is apparent that most teenagers are unable to explain why they said yes or no to donation when obtaining a license. Many do not recall whether or not they even checked the box. Others let a parent decide for them. Clarifying how organ donation works highlights the fact that transplantation is one of the most regulated fields of health care today, and it gives students a chance to make their decision long before walking into the driver license office. It also broadens students’ perspectives and underscores the privilege of having the freedom to choose.

Libby Smith speaks at Wakulla High School.

Modern tech-savvy teenagers are busier than ever and preoccupied with what is in front of them. Given that 95 percent of people in the United States support organ donation, but only 54 percent register, it is vital that we give teenagers opportunity to pause, step back and see the bigger picture when considering organ donation. For now, the best place to do it is in the classroom.

 

Saving Lives at a Summer Adoption Event

August 7, 2018: What’s better than saving lives?

On a Saturday in late June, Alachua County Animal Services hosted an event in which those who registered as organ donors or donated blood received an adoption-fee waiver to cover a pet’s adoption fee! The pet could be adopted that day, or the voucher could be used to sponsor a pet’s fee for a future “furever” home.

During the morning, a free microchip clinic was held by the Alachua County Humane Society, and those who adopted or got a pet microchipped received free pet food. Radio station 98.5 KTK was also present.

LifeQuest had 10 volunteers assist with the event, with four staffing the table at various times throughout the day. Newer volunteers were paired with more-experienced volunteers to encourage mentorship in addition to Donate Life community.

A new volunteer, whose father passed during liver transplant surgery, was able to meet another volunteer whose husband received liver and kidney transplants and has since passed. An organ donor’s friend worked with a donor mother whose son donated five organs. A second-year law student volunteered with a retired CPA whose son was a tissue donor. These connections can be very helpful for our volunteers as they work to register more people as organ donors.

Also, LifeSouth’s donor recruiter who worked the event, Deb LaBud, is a LifeQuest volunteer who received a lung-transplant 16 years ago.

Many of the nearly 200 who attended the event were already registered as organ donors; however, our table did prompt families to have conversations about organ donation, which is often one of the most important hurdles with our cause – people don’t talk about organ donation enough.

LifeQuest staff and volunteers met many of the community’s pets and had a wonderful time, as we gathered to save lives this summer!

Small Tax Collector Office With Big Results

“I think I can, I think I can.” That was the motto of The Little Engine That Could.

Gulf County Tax Collector’s offices recently took a leaf out of the classic children’s book that teaches the value of optimism and hard work. With an organ donor sign-up rate averaging 67 percent in April, they finished third in the Florida Panhandle – an outcome usually attained by larger, more urban areas. The average donor designation rate among Florida tax collector offices is 52 percent.

Gulf County Tax Collector Shirley Jenkins and staff were treated to an office pizza party for their achievement.

I’m proud to see my staff recognized for the wonderful life-changing work they do every day,” said Jenkins, who oversees a workforce of 10.

Employees at the Wewahitchka office

Nine employees, including Jenkins, are assigned to the main office located inside the Gulf County Courthouse in Port Saint Joe. Two employees work from a small satellite office in Wewahitchka. Gulf is one of a small number of counties to be under two time zones, Central and Eastern.

Gulf County’s triumph is particularly impressive given the size and scope of the competition. The small coastal community outpaced tax collectors in 33 counties with just a handful of employees. Percentage-wise, they finished neck and neck behind behemoths like Walton County (68.2 percent), population 36,500, and St. Johns County (67.1 percent), population 227,000, respectively. Gulf County has 15,800 full-time residents.

Like The Little Engine That Could, Gulf County’s formula for success is simple and selfless. Eleven professionals in two offices asked one question amid their daily routine, “Do you want to be an organ donor?”

“We take the time to talk with our customers and explain to them,” said Danette Medley, a tag and title clerk in the Wewahitchka office.

Donate Life Florida celebrates National Donate Life Month in April. Local, regional and national activities are designed to honor and recognize those who have saved lives through donation and encourage others to register as organ, eye and tissue donors.

Ninety-five percent of Florida’s donors register through the tax collector offices and Florida Department of Highway Safety & Motor Vehicles when completing driver license applications. About 114,000 people are on the national organ transplant waiting list. One donor can potentially save up to eight lives.

Florida’s donor registry is the third largest in the nation due in large part to the generous work tax collector employees do behind the scenes every day.

Be a Hero 5K

The Suwannee County Tax Collector’s Office hosted its Second Annual “Be a Hero 5K Family Fun Run/Walk” on April 21 to benefit Donate Life Florida.

Kidney recipient Candi Hinson and her daughter participated in the 5K.

The National Donate Life Month event took place in Live Oak and had more than 75 participants. It raised more than $5,500 for Donate Life Florida.

The inaugural 5K, held in 2017, had nearly 50 participants and donated more than $4,000 to Donate Life Florida. It was the third highest amount fundraised for Donate Life Florida by the state’s tax collectors throughout April. Suwannee County Tax Collector Sharon Jordan began organizing the event about two months prior.

For the 2018 race, donor family members, organ transplant recipients and living donors all came together in Live Oak to support the cause.

Multiple media outlets ran stories about the 5K, and links to those pieces can be found at the links below:

Double-lung recipient Aaron Mickel (far right) poses with his family. Mickel walked in the 5K seven months after receiving his life-saving  transplant.

Suwannee County Democrat: http://www.suwanneedemocrat.com/news/donors-recipients-celebrate-at-be-a-hero-k/article_c8e0ec9e-4951-11e8-9e09-ab11656c67f5.html

Tallahassee’s WTXL: http://www.wtxl.com/news/giving-the-gift-of-life-live-oak-teen-raises-organ/article_24b85e64-4518-11e8-8a23-bf5816313917.html

Thank you to the Suwannee County Tax Collector’s for organizing such an incredible event!

Honoring the Gift

March 12, 2018: More than anything Libby Smith wants to thank the family of the 24-year-old woman who donated her heart and saved Libby’s life. But how do you thank someone you’ve never met for a gift you can never repay?

“I never expected to feel like this,” Smith said, fumbling for the right words as she struggled aloud with the unthinkable. “What if they don’t want to meet me?”

“Then we’ll just be grateful,” said Graham, her husband of 47 years.

Smith’s selfless desire is real. Like many who receive organ transplants, she yearns to connect with her donor family to share progress and show appreciation. While families are encouraged to write each other, correspondence is managed, takes time, and remains anonymous unless both sides agree to meet.

“I wouldn’t want to do anything to step on their privacy,” Smith said.

Still bewildered by how her world has forever changed, Smith cannot begin to explain her gratitude, so she is living a life of service instead.

Just five months after receiving her heart transplant at Mayo Hospital in Jacksonville, Florida, Smith passionately promotes the urgent need to register organ donors. Between doctor visits and biopsies, she trained as a LifeQuest volunteer and speaks often in schools with the single hope of making her donor family proud.

“I never thought this would happen to me,” she recently told students at Wakulla High School in Crawfordville, Florida, where she was invited back to share her story a second time.

As a precaution, Smith carried hand sanitizer and wore a gingham surgical mask in the hallways to ward off germs during one of the worst flu seasons on record. She has always tried to stay a step ahead.

At 36, Smith was diagnosed with idiopathic cardiomyopathy, a hereditary condition that causes the heart muscle to weaken. Doctors said she would need a heart transplant to survive. Determined to beat the odds she exercised, took vitamins and enrolled in stem-cell research. Despite her best effort, doctors implanted a pacemaker in Smith’s chest.

The turning point came when Smith worked as a wedding consultant. While it is normal for the bride’s heart to skip a beat during nuptials, it is not for the wedding planner’s. Doctors noticed a pattern when Smith worked the big events. The stress of it all nearly stopped her heart. She quit her job, underwent evaluation, and was placed on the national organ transplant list for five months. She received her new heart on August 25, 2017.

Since then Smith does everything with her donor family in mind. What she eats, how she treats others, and most of all sharing her story of survival. It is all part of getting emotionally psyched up to one day write a letter for which there are no words.

English Author John Bunyan may have summed it up best: “You have not lived today until you have done something for someone who can never repay you.”

For All the World to See

February 7, 2017: We work with the most incredible donor families who generously and heroically provide the Gift of Life to others.

Some of these donor family members decide to volunteer with our cause, seeing a need to educate the public about the importance of organ and tissue donation while sharing their testimony.

One of volunteers we are tremendously blessed to know is Jennifer Banks Wilson.

Jennifer’s daughter, Holly Bunting, passed away when she was 8 years old following a car accident in Lake Butler. Holly saved four lives through organ donation, and she impacted countless others through tissue donation.

Jennifer and her family have been committed to attending LifeQuest events over the past five years since Holly’s death, but over the course of the last two years, Jennifer has further dedicated herself to the cause. 

Jennifer dyes her hair blue and green, Donate Life colors, every few months, and she had Holly’s artwork tattooed on her arm as a sleeve.

In a recent interview with First Coast News reporter/anchor Jeff Valin, Jennifer explained why she chose these dramatic ways to get attention for organ and tissue donation. Tens of thousand of people saw the TV news story when it aired a few days before what would have been Holly’s 14th birthday. Even more are watching it online. You can, too.

 

Using the links below, watch Holly and Jennifer’s story on our YouTube Channel.   https://www.youtube.com/watch?v=A0me4PVjylU&feature=youtu.beLifeQuestFlorida.org

Volunteer Spotlight: Cliff Gionet

January 8, 2017:  We are so fortunate to have phenomenal volunteers who work frequently and diligently to share the importance of organ and tissue donation and encourage others to register their decisions to become donors. Our volunteers assist us in countless ways, including presentations, administrative work, craft projects, organ donor registration stations and more.

One of our volunteers, Cliff Gionet, travels far and wide from Gainesville to share his donation testimony. Cliff’s son, Jason, passed when he was 31 years old, and he enhanced countless lives through tissue donation.

Cliff has volunteered more than 120 hours the past 2.5 years for LifeQuest, and he has traveled all over North Florida for the cause, including trips to Perry, Live Oak, Jacksonville, Starke, Ocala and Cross City. Cliff has shared his story with a range of audiences, including church congregations, high school classes, civic clubs, mother-daughter dinners and workplaces.

“Volunteering has helped me because my focus changed from a sense of complete devastation and loss after Jason died to a sense of greater purpose and meaning for the years I have left,” Cliff said. “There is no greater gift one human can give to another than life.”

There are no words to express how much we appreciate Cliff’s hard work and that of all of our volunteers who promote the Gift of Life. We thank you all for your dedication and passion.

Tribute to Life

December 21, 2017: On October 20, approximately 150 guests gathered at Palms Presbyterian Church in Jacksonville Beach for LifeQuest’s annual Tribute to Life ceremony. This reverent event honors organ, tissue and eye donors, the donors’ families, living donors and transplant recipients.

Twenty-three donor families were represented this year, and the families, living donors and recipients lit candles to honor those who have given the Gift of Life. Several speakers shared their personal connection with organ donation, including donor mother, Jennifer Banks, Burcin Taner, MD, chair of the transplant program at Mayo clinic, and Kimberly Clayton, who received a life-saving kidney and pancreas transplant.

Our Faces of Life video, which showcases photographs of organ donors, was shown as the candles glowed.  Guests were encouraged to mingle, share their stories and view the Storm Bryson Donor Memorial Quilt panels before and after the ceremony.

Donna Cottle, LifeQuest donor family services coordinator, has observed that for some donor families, the Mix and Mingle time is extremely valuable.

“Families feel more relaxed after hearing speakers share their donation stories,” Cottle said. “They learn that they are not alone in their grief, and they are reassured that organ donation was the right decision.”

“The Tribute to Life events are the most profound and memorable events we host each year,” said LifeQuest’s executive director Danielle Balbis. “The events give donor families the opportunity to gather with other families who have experienced similar, tragic losses and generously supported organ and/or tissue/eye donation. I am deeply touched by the families who come up to me after the event to say how much the Tribute to Life provides them with the continued comfort and healing they need.”

A Champion for Donation

November 14, 2017 While Ben Anderson has not had a personal experience with organ donation and transplantation, the Okaloosa County Tax Collector and his employees are committed completely to the cause.

“It’s such an honor to participate in the Donate Life program in Florida,” said Anderson. “It’s one of the most incredible programs that our government office has the opportunity to participate in. It’s a great honor to be able to encourage our customers to share in a way that can improve and add quality to the lives of others.”

Interviews that Anderson has done with organ and tissue recipients run throughout the day on the closed-circuit TV monitors in their offices, so customers waiting to be served see and hear the donation message as they wait.

Anderson says one of the reasons he and his staff are so dedicated to the cause is because the need now has a face.

“Okaloosa County has those that have received heart transplants, liver transplants, and what we see and understand is that these are neighbors of ours,” he said. ‘Where we saw the quality of their lives in absolute decline, through organ and tissue donation, they’ve been refreshed and given new life.”

When the employees began to see that the people they served were often the same people in need of a life-saving, or life-improving transplant, it became even more real to them.

“All of us realized that it wasn’t just an opportunity to participate in a great cause, but actually to reach into the community and help those that we serve every day,” Anderson said.

The Okaloosa County Tax Collector’s office is routinely among the top five counties in Florida in the percentage of their customers who register to be donors, which averages 67 percent – almost 20 percent higher than the national average.

 

Outreach for Donor Families

October 23, 2017: There were a record-breaking number of organ transplants performed in 2016 and a record number of individuals who gave the Gift of Life. A total of 33,600 patients received the Gift of Life from 15,945 generous organ donors. That is 92 people each day whose lives were saved because another person or their family said yes to donation. In our service area, 160 individuals provided 515 gifts for those in need.

While one family celebrates receiving the Gift of Life, we cannot lose sight that another is mourning the loss of a loved one. As caregivers in the field of organ procurement, the staff at LifeQuest Organ Recovery Services, the organ donor program serving all of northern Florida, has a unique and special opportunity to provide comfort to donor families during one of the most traumatic events of their lives.

“Our main goal is to present the option of organ donation and give an alternative to a horrible situation,” said Allyson Krause, LifeQuest Clinical Coordinator. “Once the recovery operation is complete, that’s not the end of the story.”

To help families heal following their loss, we provide memorial baskets to honor the generous legacies of their loved ones. We also send a letter to each donor family with general information about the recipients, including their gender, age and geographic region where they were transplanted. Further follow-up with our donor families includes bereavement resources, anniversary remembrance cards, invitations to our events, and encouragement to participate in our Strom Bryson Memorial Donor Quilt program. We also encourage families to write letters to the transplant recipients. Many donor families later volunteer for LifeQuest, share their loved ones’ stories and provide education about the importance of organ donation.

In addition to providing ongoing aftercare and bereavement services to all of its families, often individual coordinators and family advocates form personal bonds with family members that blossom into genuine friendships.

Senior Clinical Coordinator Jessica Skiver remembers a donor case from a past Valentine’s Day, in which the organ donor’s long-time boyfriend and Skiver connected and have kept in touch throughout the years. He sends Skiver a Christmas card annually, and she sends him a card every Valentine’s Day.

“He’s very thankful for everything we did to make her legacy very impactful,” Skiver said.

One Christmas, LifeQuest “adopted” one of its donor families. The father passed away in a motorcycle accident, saving five lives through his donation. LifeQuest staff contributed gifts to make the holidays a little more special for his wife and four young children.

Public education coordinator Coral Denton has built numerous friendships with donor families who want to further our cause, and special memories from these relationships stand out. She has gone kayaking on Crystal River with Terry Rooks, the sister of donor Tim Rooks. She and donor father Clifford Gionet share a passion for traveling and send each other photos upon return from each new adventure. The four-year-old little sister of organ donor Peyton Evans made Coral a coral snake at school, which she hangs in her office.

It is a privilege to serve our donor families and honor their loved ones, as their stories continue onward through the ultimate gift, the Gift of Life.

Working the Mission in the Face of a Hurricane

October 2, 2017: 

As Hurricane Irma barreled toward Florida the weekend of September 8, the LifeQuest team activated its disaster plan in order to keep business running as normally as possible.

Our dual focus was the safety of our employees and their families, as well as the individuals who may be referred as potential donors, as we have an obligation to honor their decisions to become life-saving donors.

Staff in the path of the storm who did not need to be in the office were encouraged to work from home, and staff assigned to respond to the hospitals’ referrals were asked to do as much as possible over the phone. As with previous hurricanes, we communicated well with the unit staff in our partner hospitals in “the cone” – from Jacksonville to Tallahassee – where there were potential organ donors.

In spite of staff losing power and water one-by-one, and some evacuating out of flood-prone zones, our administrative-on-call team still triaged all of the referral calls, and the rest of our teams stayed in touch with each other to ensure everyone was accounted for and safe.

As the storm was intensifying, we had an authorized donor in case one of our critical care units. This individual’s family graciously agreed to allow our staff extra time and delay the case until air and ground travel was safe for transplant programs and their recipients. The family, nursing staff and attending physician could not have been more supportive of our process and needs.

It truly is a blessing to have such a dedicated and committed team as the employees at LifeQuest, who never fail to put the mission of saving lives first.