“Language exerts hidden power, like the moon on the tides.” Rita Mae Brown

The second annual Conference on Consent and Conversion held in San Antonio, TX in May and attended by over 120 participants from MTF recovery partner agencies across the nation, identified best practices for tissue consent and conversion while honoring the wishes of the donor and/or family.

The Reverend Sue Wintz, M Div., board certified staff chaplain at St. Joseph’s Hospital in Phoenix, AZ, set the tone for the two-day conference by emphasizing the importance of “focusing on the donor families, honoring them in an intentional way, and walking with them every step of the donation process.” Near the end of her talk, Sue revealed her personal capacity for compassion. Sue was confronted with a tragedy in December 2003, when her 17 year-old daughter, Sarah, died as a result of a car accident. Sarah’s gifts were tissue for transplant research and whole body donation for research.

The Reverend Sue Wintz set the tone for the two-day Consent and Conversion Conference. Sue’s daughter, Sarah, was passionate about wanting to donate. She wrote out her wishes and kept them in her wallet.

The theme of compassionate care through the power of words echoed throughout the conference in speaker after speaker, including Nancy Hogan, PhD who “learned the

language of suffering by talking to bereaved families,” and Charles Corr, PhD who addressed the topic of compassion fatigue.

Kathleen C. Haspel, PhD in Communications at Rutgers University, is an expert in conversation analysis. Her session, the Language of Consent Conversations, was a special highlight of the conference. Playing recorded transcripts of actual consent conversations, Kathleen showed how the structure, sequence, sound and segues of consent conversations can impact the family’s decision-making process about donation.

Jim Boggs, PhD, presented a New Framework for Family Approach. Jim’s work has resulted in increased family consent rates and enhanced partnerships with donation stakeholders. Boggs uses professional actors to simulate family approaches, and calls upon donation coordinators to volunteer to participate in on-the-spot simulations in front of the audience. In this case, he called upon MTF Donor Coordinator Teri Dummer, who was given the case details shortly before her interaction with the actors, thus mirroring the reality of what donation coordinators go through “in the moment” with families. Participants were provided with a list of “attend-to” items, such as relatedness, trust, family power dynamic, pacing/timing and directiveness/guidance, and then observed Teri’s conversation with the family. A debriefing followed in which the actors gave feedback as educators, and the audience provided professional input. The conference organizers wish to thank Teri for her excellent work during this simulated session.

The two-day program also included addresses from MTF executives Martha Anderson and Bruce Stroever, and best practices panels and presentations from individuals representing Gift of Life Donor Program, Arkansas Regional Organ Recovery Agency, LifePoint, LifeGift Organ Donation Center, New York Organ Donor Network, LifeSource, and OneLegacy.

Planning is underway for next year’s conference. Email Lauralee Brown at Lauralee_Brown@mtf.org with comments and suggestions.

Kayla was excited to play in her last girl’s varsity basketball game of the season. The gym was loud and full of school spirit. As she lunged forward to steal the basketball, she suddenly screamed and fell to the floor pounding her fist in agony. Her worst nightmare had just become a reality. She had torn the anterior cruciate ligament in her left knee.

Kayla was one of about 250,000 people nationwide who tear their ACL each year leading to the need for surgery. The ACL controls the front-to-back motion of the knee joint. While ACL injuries can strike anyone, athletes, especially female athletes, are most prone to this type of injury. Some theories point to hormone levels affecting the ACL. Women also have smaller ACLs than men, and the structure of their hips can lead to greater ACL injuries. Also, women tend to play sports in a more upright position than their male counterparts.

“Sports were always such a key part of my life. It was difficult to accept the fact that I would not be playing sports competitively for at least six months,” said Kayla.

Before she was eligible for surgery, Kayla spent five weeks rebuilding strength in her quadriceps muscle through physical therapy. In April 2008, Kayla underwent successful surgery using donated tissue. An Achilles tendon from a generous donor was used to rebuild her ACL.

Kayla didn’t know much about organ and tissue donation prior to her injury, but now she plans to spread the word about the gift of donation.

“I’ve written a thank you letter to my donor family. But words can’t really express how thankful I am to be doing the things I love to do, like coaching and playing soccer, jet skiing, swimming, and just hanging out with my friends. I am so thankful. Because of a generous donor and donor family, I have my life back.”

Kayla is off to college this fall where she will be playing soccer at the Division 3 Level. Her dreams are alive and well.

(L-R): Rick Bieber, director of The 5th Quarter; Martha Anderson, Executive Vice President, Donor Services, MTF; Stacy Earl, cast member of The 5th Quarter; and David Fleming, President, Donate Life America

A good cry at the movies can be therapeutic. Even more significant is when a tear-jerker effectively educates the public about organ/tissue donation. Such is the case for the movie “The 5th Quarter,” which about 100 attendees were privileged to watch this June at the MTF sponsored movie premiere during the AOPO convention.

“The 5th Quarter” tells the true inspirational sports story of two heroic brothers, Luke and Jon Abbate. In a season filled with promise, Luke, a football standout on his high school team, and Jon, equally talented in football at Wake Forest University, experienced a loss far greater than any championship game.

Just four days before his 16th birthday, Luke died in a car crash. Luke’s parents (played by Aiden Quinn and Andie MacDowell) decided to donate his organs. In the following hours, five people received the gift of life. In the weeks that followed, Jon continued the tribute. Wearing Luke’s #5 jersey, Jon led his team, the Wake Forest Demon Deacons, to the most successful football season in school history and an appearance at the 2006 Orange Bowl.

The movie was directed by Rick Bieber, who also attended the AOPO premiere, along with Stacy Earl, who plays Jon Abbate’s aunt and who composed much of the music for the movie. Rick introduced the movie to attendees and afterwards answered questions from the audience.

Rick Bieber began his career in the New York offices of Columbia Pictures Industries. He has owned and operated his own independent company as well as serving as the chief executive of several prominent entertainment companies, and has produced over 30 television and cable movies, and several feature films.

According to Rick, the public can expect a release of “The 5th Quarter” in movie theatres during football season fall 2009.

MTF thanks Donate Life America for their assistance in arranging the premiere.

The Musculoskeletal Transplant Foundation (MTF) has named Ken Burkel and the Rotary Club of Clemmons, North Carolina winners of the national 2009 Nicholas Miller Award for Excellence in Donor Family Support. The award honors volunteer donor family members and family support groups, volunteer staff and/or organizations affiliated with MTF that have exhibited exceptional commitment to supporting organ and tissue donor families.

Ken and his Rotary Club were honored for their inventive idea of using traveling billboards to spread the message of organ and tissue donation. Before North Carolina had its own state registry, the Rotary Club of Clemmons challenged its members to sign a card expressing their wishes to become donors. As a result of their efforts, over 600 new donors were signed.

Inspired by their successful drive, the Club considered erecting billboards in the Winston-Salem, NC area, but decided that rolling billboards would expand donation awareness to thousands more people. Members obtained funds for creating colorful billboards featuring donor families and recipients to wrap around 16 tractor-trailer trucks.

The Rotary Club of Clemmons received local and state attention for their traveling billboards. Locally, Channel 12 News aired the event, which was attended by local officials and state legislators. The Rotary Club of Clemmons and Carolina Donor Services were commended for their projects on the floor of the U.S. House of Representatives.

Said one nominations reviewer: “The project completed by Ken Burkel and the Rotary Club of Clemmons was, in my opinion, at an entirely different level than all other applications. It was very comprehensive, innovative, strategic and very labor intensive. There is no doubt that there is already great impact, the program seems set to continue to grow, and it is the sort of initiative that could be replicated elsewhere.”

The Nicholas Miller Award for Excellence in Donor Family Support is named after the eldest son of Thomas and Jayne Miller. Nicholas died prior to his second birthday. He was a heart transplant recipient, and at the time of his death, Nicholas was identified as an eye donor. The Miller Family is committed to increasing donor awareness education and donor family support.

In June 2009, MTF introduced BellaDerm, the first human dermal tissue graft offered to plastic surgeons to be used specifically for elective facial and body contouring procedures.

Donation of skin for BellaDerm comes from living skin donors who have lost significant amounts of weight and are undergoing skin removal (body lift) procedures. This excess skin would normally be discarded after surgery. Instead, patients who meet medical criteria, now have the opportunity to enhance the lives of others by giving specific consent for their skin to be used for facial and body contouring procedures. Tissue from deceased donors is not used for this new type of tissue form.

According to Martha Anderson, Executive Vice President, Donor Services, MTF, “Living skin donation gives a new opportunity for people to donate and has a tremendous impact on these living donors who feel good about their new bodies and are excited to improve the lives of others. Additionally, while MTF’s primary focus remains on preparing tissue from deceased donors for surgical reconstructive procedures, the use of skin from living donors for contouring procedures ensures that we continue to provide needed grafts to patients with serious medical conditions.”

Colleen Kenny, MTF Surgical Skin Director, reports that since the living skin donor program began, MTF has received 96 signed surgeon agreements.

“Prior to living skin donation, surgeons had been discarding this skin knowing there must be a use for this valuable tissue. It is inspiring to see how happy surgeons and donors are to learn that they can now help others through the opportunity of living skin donation,” said Kenny.

For more information, visit BellaDerm.org.