November is Eye Donation Month

November is Eye Donation Month

November is Eye Donation Month! Eye Bank Association of America (EBAA) uses the month as an opportunity to educate the public about the importance of registering to be a donor, about cornea donation and transplantation, and to acknowledge the work of their partner eye banks. As a member eye bank, Saving Sight will be taking part in celebrating Eye Donation Month and the theme of The Power of You. The campaign demonstrates the “power” that individuals have in building hope, restoring sight and changing lives, including healthcare professionals and partners, researchers, eye bank staff, corneal surgeons, and recipients and donor families.

During the 2017-2018 fiscal year, Saving Sight provided corneal tissue to 2,957 transplant recipients locally and throughout the world thanks to the selfless gift of sight from 2,480 eye donors and their families.

We will be sharing several cornea recipient and donor family stories in November. Be sure to follow Saving Sight on Facebook and on our website during November for #EyeDonationMonth2018. Thank you for helping us change lives by saving sight!

Donor Family Finds Comfort through Volunteerism to Honor the Legacy of their Son

Donor Family Finds Comfort through Volunteerism to Honor the Legacy of their Son

Because of donation, Vivian and Larry know that John’s legacy lives on in 37 other people. For Larry and Vivian, volunteering in support of the Donate Life message has brought great healing after their son John gave the gift of life as an eye and tissue donor.

John was a loving and protective big brother to his sister, Eleanor. Just 17 months apart, the siblings shared many friends and interests. They both loved sports and music. “John played the baritone saxophone on an award-winning jazz band in junior high and high school, earning a personal award at a jazz festival in high school,” said Vivian. He was also very involved in scouting, from Tiger Cubs to Cub Scouts and Boy Scouts. John also loved politics and was involved in many political organizations, especially when he went to college. “Just 6 weeks before John passed away, he started school to become a massage therapist, which had long been a dream of his,” said Vivian.

John died of an aortic dissecting aneurysm on October 11, 2004, just under four weeks before his 23rdbirthday. “When the ER doctor came in to ‘that’ room to tell us the news that they were unable to revive John, our world collapsed around us,” said Vivian. “At some point, we thought of donation and told the nurse that we wanted John to be a donor. There was no thought, at this point, about what could or could not be donated. We simply wanted him to be a donor.”

Gift of Hope in Illinois called Larry and Vivian at the hospital to explain the donation process. “After this day, the next correspondence we received was from the Lion’s Eye Bank, now Saving Sight. We were told John’s corneas went to two people in Missouri who could now see this world through our son’s beautiful eyes,” said Vivian. “Thus began the feelings of comfort and healing that donation gives to the donor family. Over the next few years, we received the news that John’s other bones and tissues were given to 35 other recipients.”

Because of donation, Vivian and Larry know that John’s legacy lives on in 37 other people. “A man and a woman in Missouri gained sight because of his corneas. The fact that two people see this world through John’s eyes is remarkable,” said Vivian. “A Staff Sergeant in the Army has a rebuilt knee from our son. Beyond those, there are 34 people from New York to California and Florida to Wyoming, who carry a part of our son’s precious gift.”

Larry and Vivian have been very involved as Donate Life volunteers on both the national and local level. Volunteering with Donate Life

As a donor family, Larry and Vivian feel there is no way to overstate how meaningful John’s donation has been to their ability to cope with, and survive, in a world without him. “Add to this, the benefits of being advocates for donation through Saving Sight, IL Secretary of State Jesse White’s office, Gift of Hope and Eversight, and you have our recipe for survival,” said Larry. One of the questions Vivian asked the day he died was ‘How will people know John?’ “This is accomplished by being donor advocates for the above organizations and others. We have been blessed to share John throughout the state of Illinois and to places as far away as Savannah, GA, Denver, CO, Salt Lake City, UT and Pasadena, CA. The measures of comfort and healing we have been blessed with are incredible. It is our saving grace,” said Larry.

Larry and Vivian have been very involved as Donate Life volunteers on the national and local level. Here are a few of their volunteer experiences:

  • Presentations and booths (too numerous) for groups from small health care seminars, nursing students, hospital staff, and professional organizations associated with donation (funeral home directors, coroners, etc).
  • Savannah, GA – Presentation for the American Pyrotechnic Association’s National Conference, 2010
  • Denver, CO – Presentation to Allosource home office staff, 2007 and 2015
  • Denver, CO – Presentation to all 3 shifts at Statline, 2015
  • Salt Lake City, UT – Presentation to Allosource staff, 2007
  • Pasadena, CA – Donate Life Rose Parade Float, Vivian rode the float in 2013, and John is on a Floragraph in 2018
  • Pasadena, CA – We are both members of the DL Rose Parade Float committee, 2013 to present

“We have received such healing through the organizations that have nurtured us and allowed us to tell our story, through their employees who are always there for us, through the recipients and donor families that we have come to know and love around the country, and most importantly, for this important cause which also allows us to include both our daughter and granddaughter in our journey as we honor John.”

In October, Larry and Vivian were able to travel to California to decorate a floragraph that will be carried on the 2018 Donate Life Rose Parade Float with their daughter Eleanor and granddaughter Alina. “We left the majority of the floragraph decorating to Eleanor, who did a fantastic job,” said Vivian. They left part of the floragraph unfinished to bring home to Illinois to have friends and family help complete it at a special event.

This November, Larry and Vivian held a beautiful celebration at the United Community Bank in Sherman to finish decorating John’s floragraph. The intent of the event was not only to finish John’s floragraph, but to also promote donation said Larry. “We invited family to help with this, as well as longtime friends of ours, John’s and Eleanor’s. We, of course, had help from Saving Sight and the IL Secretary of State’s Office, both at the event and leading up to it.”

“On the day of the event, we were overwhelmed by the response,” said Larry. “We saw former teachers and classmates of John’s, including his former jazz band director. Family and friends visited from all over the state of Illinois and Iowa.”

The decision to participate in the Donate Life Float was an easy one for their family. “We are blessed that our business was in a position to sponsor John this year. We have been involved with the Donate Life Float for 6 years – first as honorees and the last 5 as volunteers and committee members,” said Larry.

“It is unbelievable that John’s floragraph will be placed on the Donate Life Float and will have the chance to been seen by hundreds of thousands on the parade, and millions on television,” said Vivian.

 

Look for the Donate Life Float during the 129th Rose Parade on January 1, 2018.

 

Donor Mother Shares Her Experience with Donation and Correspondence

Donor Mother Shares Her Experience with Donation and Correspondence

Over the years, Carol from Sunrise Beach, MO has generously volunteered several times to share her experience as the mother of a donor. She tells a powerful story about her son Mark who became a cornea donor in 2010. Her son’s heroic decision to donate impacted the lives of two cornea recipients as well as Carol and the rest of Mark’s family. Carol tells of the therapeutic effects of knowing her son has helped others, including how she has corresponded with the recipients. She encourages others to consider donation and correspondence because it changes lives for the better.

Carol most recently spoke at the June 2014 Saving Sight Board of Directors meeting and Lions L.E.A.D. event, so we thought it appropriate to re-share the web article from 2011 so she and Mark can continue to have a positive impact on others.

When someone loses a loved one, it’s difficult to find the good in such a heartbreaking situation. However, for many families, eye, organ, and tissue donation has given them a sense of hope. And when those families hear from their loved one’s recipients, it’s particularly rewarding.

In 2010, Carol lost her 30-year-old son, Mark. Unbeknownst to the family, Mark had made the pledge to become an eye donor through Missouri’s first-person consent registry – a choice that didn’t surprise Carol.

“Mark was absolutely the most loving person that we know in our family,” she said. “He cared very much about his family – about everybody. He didn’t know a stranger. Mark was never judgmental, gave everybody a fair chance, and always tried to help the underdog.”

As Carol and her family moved through the grieving process, they received a letter from Saving Sight informing them that Mark’s corneas had been provided to two recipients in California. Carol wrote the recipients, introducing them to her son, and soon received letters back from both individuals. One recipient in particular struck a chord with Carol, and the two began corresponding frequently.

“I can’t say enough about how his words have helped me,” said Carol. “This man just amazes me. Even in his last letter, he said, ‘Mark and I had our stitches removed and the good doctor says our vision continues to improve. We are a good fit. There was a moment or two I did feel Mark was there.’ He couldn’t have said anything better to me.”

The recipient/donor family correspondence has not only helped in the healing process for Mark’s direct family, but for his church family as well. Carol has read letters from Mark’s cornea recipient to fellow church members, helping them to find hope in desperate situations and encouraging them to follow Mark’s lead by pledging to become eye, organ, and tissue donors through Missouri’s donor registry.

For Carol, Saving Sight’s correspondence program has made a difference for her family, and therefore, she urges donor families and recipients alike to consider writing their own letters.

“I know Mark is living through this gentleman. I feel he has Mark in the palm of his hand like another grandpa, and it gives me such a comforting feeling. This man was so generous in his thoughts and words back to my family.”

To learn more about writing your donor family or your loved one’s recipient, please read our Correspondence page or contact Saving Sight at 800-753-2265.

If you are a cornea transplant recipient or donor family and would like to share your experience like Carol has, please send us a note through our Contact page.

To join the millions of Americans like Mark who signed up for the donor registry, register online at Donate Life America or at your local Department of Motor Vehicles office. And be sure to share your decision with your family and friends.

Bonnie and Charlotte: Correspondence After Transplantation

Bonnie and Charlotte: Correspondence After Transplantation

Charlotte, right, received a cornea transplant with tissue donated by Cody,
son of Bonnie (left). After years of
correspondence, Charlotte and Bonnie decided to meet each other.

Correspondence after donation and transplantation can be a positive part of the healing process for many people. Saving Sight offers donor families and cornea transplant recipients the opportunity to write to each other in a safe, positive environment. Acting as an intermediary, Saving Sight accepts the letters and then passes them on to the appropriate parties, which helps preserve everyone’s anonymity. Recipients and donor families alike have said that correspondence had therapeutic effects.

When Bonnie’s son, Cody, died in Divernon, Illinois after a car accident, he was able to donate skin and corneas. “Cody always wanted to be an organ donor,” she said. One of his corneas was received by Charlotte from Clinton, Missouri, who needed the transplant to treat a corneal infection that threatened to destroy her entire eye. Quite soon after her transplant surgery, Charlotte initiated the correspondence process with the help of Paul, her son who lived with her and cared for the family farm. Paul said his mother was eager to correspond with her donor’s family because she understood loss, having recently lost two grandchildren. “Because of that unselfish loved one was a donor and gave me a gift, I still have my eye,” Paul remembered Charlotte saying. “So she wanted to contact the family and thank them.”

With Paul’s help, Charlotte sent a letter to Saving Sight which was then passed on to Scarlett, Cody’s wife. “Scarlett didn’t feel like she was ready to correspond, so I asked permission to correspond instead,” said Bonnie. And with that, Bonnie and Charlotte began the process of getting to know each other. “Charlotte was very understanding that someone died to give her this cornea,” Bonnie recalled. “She was a really sweet lady.”

When people correspond for more than a year and both parties consent to communicating without anonymity, Saving Sight will connect the donor family and recipient so they can pursue contact on their own. Bonnie and Charlotte wrote several letters in that first year and continued contact in the years that followed.

“We talked on the phone sometimes, at birthdays and at Christmas,” Bonnie said. Eventually, Bonnie offered to visit Charlotte at her home in Clinton. “My daughter Tara and I had discussed from the time I first started corresponding with Charlotte how we would love to meet her, although we knew it would be difficult on us. However, Tara was unable to come with me so I drove there on June 16, 2012, which was Cody and Scarlett’s wedding anniversary,” Bonnie said. “I stayed at Charlotte’s house for three or four hours and met Paul. We had a wonderful visit. It was nice to have a part of Cody with her, to know that he lived on. Cody had big blue beautiful eyes, and I just loved the fact that I got to meet her and look in her eyes.” Paul said the feeling was mutual: “It meant a lot to Mom to get to finally meet the person behind the voice on the phone, as Mom was unable to travel long trips.”

Charlotte, a cornea recipient, corresponded with Bonnie, the mother of a donor. 

Despite the happiness of meeting Charlotte face to face, Bonnie also found the experience to be emotionally trying. “I held it all together until I drove out of her driveway, and then I cried all the way home,” Bonnie said. “It was Father’s Day the next day and just meeting her – she was a wonderful lady. She was very appreciative of how Cody had died but was willing to give his cornea. She never took it for granted. That’s why she wrote the letter – she wanted to know about the person who donated and his family.”

Charlotte’s daughter made quilted table cloths, and she gave one to Bonnie as a keepsake from their visit. “I cherish that,” Bonnie said. “Charlotte had health issues, and I think she knew we wouldn’t see each other again.” In April of 2013, Charlotte passed away at the age of 91, and thanks to Paul’s care, she was able to remain on the farm until a few days before her death.

Paul described his mother as having “an abundance of love that she shared with her eight children and many outside her family” and that she “was proud of Bonnie’s friendship.” Bonnie, too, looks back fondly on the trip: “I felt so fortunate to have met Charlotte. It’s hard to explain what it’s like to meet someone who has your son’s cornea. But I can’t say enough how blessed I felt by it all.”

To learn more about the young man whose generous donation brought Bonnie and Charlotte together, read Cody’s story. To learn more about Saving Sight’s correspondence process, visit our cornea donation and transplantation page.

Heartland Lions Eye Banks’ Work in Corneal Transplantation Contributes to Total Lifetime Net Benefit of Nearly $6 Billion

Heartland Lions Eye Banks’ Work in Corneal Transplantation Contributes to Total Lifetime Net Benefit of Nearly $6 Billion

Corneal transplants performed in the United States this year will result in nearly $6 billion in total net benefits over the lifetime of the recipients, according to a six-month study undertaken by the Eye Bank Association of America (EBAA). Heartland Lions Eye Banks has been an EBAA member since 1961 and will provide nearly 2,600 corneas for transplant this year – an estimated lifetime value of $217,214,628*.

The study compared the medical cost of transplant procedures to the direct and indirect lifetime costs of the alternative: living with blindness or severe vision impairment. With a corneal transplant, a recipient avoids the direct expenditures that come with vision loss (e.g., higher routine medical costs and long-term care costs) and the indirect costs of potential years of lost productivity to both the recipient and any family caregivers.

“We’re acutely aware of how valuable cornea transplants are to our recipients because they tell us,” said Tony Bavuso, chief executive officer of Heartland Lions Eye Banks. “But this study gives us a more objective understanding of the financial benefits of our work. I think the EBAA has done a great job of illustrating that cornea transplants not only give the gift of sight to recipients but they also enhance productivity and reduce medical costs for our nation.”

Eye disorders are the fifth costliest to the U.S. economy after heart disease, cancer, emotional disorders and pulmonary conditions. The Eye Bank Association of America commissioned this study to determine the economic impact of corneal transplants. Researchers used previous years’ transplant numbers and census data to estimate total corneal transplants for the full 2013 calendar year.

The cost-benefit analysis depicted in the table below reveals that the lifetime benefit of the procedure is overwhelmingly greater than the costs of the surgery.

Lifetime Economic Cost-Benefit of Corneal Transplantation

Source: Cost-Benefit Analysis of Corneal Transplant, September 2013, The Lewin Group

Since Heartland Lions Eye Banks’ founding in 1960, more than 40,600 men, women and children have received corneal transplants to restore vision and relieve pain from injury and eye disease. With a success rate greater than 95 percent, the one-hour procedure restores the patient’s sight and quality of life. In fact, it’s one of the most common and least invasive transplant procedures performed in the U.S.

Corneal transplants also translate into direct savings by the federal and state governments. The study assumed full retirement at age 65, so the net indirect cost savings is small for these patients, but the per-capita lifetime net medical benefits of $67,500 for patients age 65 or greater receiving corneal transplants in 2013 will save Medicare, Medicaid and patients a combined $2.4 billion nationally, including $92,894,792* in the states served by Heartland Lions Eye Banks.

For a full copy of the report, please contact EBAA at info@restoresight.org.

About Heartland Lions Eye Banks:
Heartland Lions Eye Banks is a division of the Missouri Lions Eye Research Foundation, a 501(c)(3) organization that changes lives by saving sight through eye banking, community vision programs and eye care assistance. HLEB operates six branches throughout Missouri, Kansas and Illinois, and it’s one of the five largest eye banks in the U.S., offering high-quality donor tissue to corneal transplant surgeons. For more information, contact pr@hleb.org.

About EBAA:
The Eye Bank Association of America (EBAA), established in 1961, is the oldest transplant association in the nation and champions the restoration of sight through corneal transplantation. Over 80 member eye banks operate in the United States, Canada and Asia. These eye banks made possible more than 70,000 sight-restoring corneal transplants in 2012 and the opportunity to perform more transplants is significant. Aside from those suffering from infections or communicable diseases, virtually everyone is a universal donor. The function of corneal tissue is not dependent on blood type, age, strength of eyesight or the color of the eye. To learn more, visit www.restoresight.org.

* Savings calculations are determined by multiplying the net lifetime benefit by number of patients served in 2012.

 

Transplant Recipient Pays It Forward

Transplant Recipient Pays It Forward

Since receiving her transplant, Diane has encouraged others to make the pledge to donate.

It was a routine eye exam that brought an incredible gift full circle for Diane, a cornea transplant recipient.

In August 2011, Diane of Independence, MO went to her eye doctor for a new pair of eyeglasses. During the exam, the optometrist noticed Diane showed signs of Fuchs’ dystrophy, a corneal disease that can lead to permanent blindness. Because Fuchs’ is usually a slowly progressing condition, Diane was surprised to learn the disease affected both of her eyes.

Diane immediately underwent a corneal transplant in one eye to save her sight. Although she faced some additional problems the weeks after surgery, today her vision has considerably improved. Diane no longer needs bifocals and can read her favorite books with no issues. In addition, her transplant has given her the vision she needs to teach painting classes, garden, and volunteer with her church’s thrift store – not to mention playing with her four grandchildren.

Diane’s transplant is just one chapter in her family’s story of donation. Several years ago, her husband, who had a brain tumor, died unexpectedly from an aneurysm. In order to prevent others from facing the same fate, the decision was made to donate his brain for research. Following his unexpected passing, Diane learned his corneas and skin were donated as well.

“When I received the letter from the recipient thanking me for the gift of sight, I was shocked at first. But I got to thinking about it – how wonderful it was that someone would be able to see and that skin grafts could help someone at a burn center. That changed everything for me. It made such a difference in how I looked at donation.”

Since then, Diane and her family have continued to pay it forward by spreading the word about donation and registering to become donors themselves – a pledge that grew even stronger after Diane’s own transplant.

“Because of our story, other people have decided to pledge to become donors as well. My best friend, other friends, people from church. Once you get such a special gift from someone, it touches the hearts of the many people who hear your story. And it certainly hits home when you realize you may be the one who needs another’s gift.”

To make your own pledge to donate, please visit www.donatelifemissouri.com.