donor family support – Midwest Transplant Network

Summit Outlines the Crucial Relationship Between MTN and Palliative Care Providers

January 27, 2025/in

News

Midwest Transplant Network welcomed 62 attendees both in person and virtually for a Palliative Care Summit Jan. 16. The event focused on defining the role of palliative care in the organ donation process and collaborating with palliative care teams to best support families when faced with end-of-life decisions.

Additional topics included differentiating the donor process between first person authorization (FPA) and non-FPA, and an explanation of the family readiness assessment tool (FRAT). The summit was provided in partnership with MTN and Stormont Vail Health Topeka, Kan.

Pilot Program Results
Janelle Williamson, MS, APRN, NP-C, ACHPN, FPCN, served as the keynote speaker. Williamson is a Palliative Care Nurse Practitioner at Stormont Vail Health. She provided a review of a pilot program at Stormont Vail Health during the past year aimed at developing best practices to collaborate and include donation in end-of-life care planning conversations. Supportive data from the pilot program demonstrated improved donation outcomes with 64% of families saying yes to donation before a collaborative approach and 78% when MTN and palliative care worked as a team to support the families together.

A Doctor’s Perspective
“The summit provided compelling evidence that greater collaboration between MTN and palliative medicine provides a clear benefit for families facing donation considerations,” said Erin Khouri, DO AAEM, Saint Luke’s Physician Group, Supportive and Palliative Medicine Division.

Khouri added, “I appreciate the opportunity to share this information with my team, and to work on better supporting our MTN colleagues as we all support patients and families.”

Frontline Experiences
MTN Family Services Coordinator III, John Michael Segars, Pharm.D., shared stories from his work that fully immersed attendees in end-of-life experiences and when to begin the conversation about organ, eye and tissue donation. “You never know what to expect when you walk into a room with a family,” Segars said. “We get to know the families and learn more about their loved ones. We want to be transparent with the families and fold the donation conversation in at the right time for the family.”

The Greatest Benefit
MTN’s Hospital Services Coordinator I, Mallory Reitemeier, MSN, RN, CMSRN, said, “I think the greatest benefit of the summit was hearing Janelle’s perspective on the importance of collaboration between MTN and palliative care.”

Reitemeier said the data shows the impact a positive relationship between palliative care and MTN can have. “Hearing from a relatable, palliative clinician makes the work we’ve done impactful. I am hopeful she has inspired attendees to leverage the relationship between their palliative care teams and MTN to maximize the gift of donation.”

Joe Hecht, donor hero, wearing a white button-down shirt with a grey and maroon tie.

MTN Donor Hero to be Honored on OneLegacy Donate Life Rose Parade Float, Jan. 1

December 4, 2024/in

/by Midwest Transplant Network

Joe Hecht, donor hero, Midwest Transplant Network

It’s the time of year for holidays, celebrations and parades on TV!

Midwest Transplant Network is proud to co-sponsor the OneLegacy Donate Life Rose Parade® float and honor a donor hero from our area with a floragraph portrait on the float.

Donor Hero Joe Hecht
MTN chose donor hero Joe Hecht of Sturgeon, Mo., as the 2025 Rose Parade honoree.

Joe was 38, a son, husband and father. He died in July 2020 and donated his kidneys at MU Health Care in Columbia, Mo., saving the lives of two people.

Growing up, his mother, Sheila Hecht, served in the Navy. They lived in Florida and Washington, experiencing the world along the way. Baseball, working on cars and “California Love” by Tupac were his vibe. He enjoyed a life of adventure with his wife, Melissa, taking trips to the Amazon rainforest and Machu Picchu in Peru. Joe loved being outside with their young daughters, Elena and Isabelle.

“We are proud of Joe’s legacy as an organ donor. We always talk about daddy. He’s a hero. We are thankful to be invited to represent Joe at the Rose Parade®. It’ll be a wonderful memory for our family,” said Melissa Hecht.

Floragraph Portrait
All Rose Parade floats must be covered with flowers or other natural materials, such as leaves, seeds or bark.

The OneLegacy Donate Life Rose Parade® float features numerous floragraphs – portraits made entirely of organic materials – remembering donors from around the country. The floragraphs are created by volunteers. To allow the families to be part of the experience, a small portion of the floragraph is left incomplete so the family can add the final touches.

In November, MTN hosted a floragraph ceremony for the Hechts to complete Joe’s portrait. The ceremony welcomed family, friends and representatives from MU Health Care.

The Hechts will participate in parade events hosted by OneLegacy, the organ procurement organization of southern California. They’ll get to see Joe’s floragraph on the float ahead of the parade and watch from the grandstand as the float travels down the route.

About the Parade & Float
The 2025 Rose Parade® theme is Best Day Ever.

The OneLegacy Donate Life float theme is Let Your Life Soar, inspired by the Japanese celebration of Children’s Day. The float will feature a vibrant scene of colorful koi nobori, or windsocks shaped like fish, flying over a garden of flowering trees, stone lanterns and a bridge. Streamers will bear a family crest, followed by koi nobori in a sequence representing father, mother and children. In Japan, “koi fish represent strength, courage and health. These same attributes define those who chose to give the gift of life, as well as their families and recipients.” The scales of the koi fish are floral portraits, or floragraphs, representing donor heroes.

Learn more about the OneLegacy Donate Life Rose Parade® float.

Watch the Parade
The 2025 OneLegacy Donate Life Rose Parade® float will be featured during the 136th Rose Parade® on Wednesday, Jan. 1 at 8 a.m. PST. The Rose Parade will broadcast live in the U.S. on NBC, ABC and Univision; please check your local broadcast listings for details.

A display table with framed portraits, a vase filled with flowers and a rendering of the OneLegacy Donate Life Rose Parade float 2025.

MTN hosted a floragraph finishing ceremony for the Hecht family as part of the Rose Parade experience.

A floragraph portrait of Joe Hecht, a donor hero from Sturgeon, Mo. The floragraph will be featured on the OneLegacy Donate Life Rose Parade float on Jan. 1, 2025.

A bouquet of flowers in the foreground and a woman getting a hug in the background.

Melissa Hecht gets a hug from a friend during the floragraph ceremony for her husband, Joe Hecht.

Celebrating Black History Month: Rev. Isaac Ruffin

February 27, 2024/in

/by Midwest Transplant Network

Rev. Isaac Ruffin, a Family Services Coordinator II at Midwest Transplant Network, shares his perspective in honor of Black History Month.

For more than 19 years, the Rev. Isaac Ruffin, Family Services Coordinator II, has served Midwest Transplant Network (MTN) donor families with all of his heart and soul. He has a passion for walking alongside families who are experiencing an unexpected loss and offering comfort, lending a kind and listening ear, and sharing how donation can help extend their loved one’s legacy.

“For my generation, with all of the history we have seen, Black History Month is a celebration of the coming to fruition of a people,” shared Ruffin. “It is a time to be seen as equals and fulfill our dreams, hopes, aspirations and our true potential.”

He’s inspired by his grandfathers – one a pastor and the other a deacon. Through their ministry, they served congregations, raised large families and were role models of compassion and integrity.

While completing his Clinical Pastoral Education at Research Medical Center, Ruffin had the opportunity to work with MTN as a hospital chaplain in caring for several donor families. He was very aware of some of the cultural concerns about organ donation within the Black American community. “I want to serve others and build trust with underserved and diverse communities as a face within one of those cultures myself.”

He understands the impact donation can have on an individual, a family and a community as his brother received the gift of a transplant many, many years ago. His work with donor families has always been about giving back as a part of his personal ministry and for the gift his brother and their family received.

Known for his quiet, infinite readiness to serve others, Rev. Ruffin finds peace in creating memories of donor heroes with their families. Over his almost two decades of service, countless families have experienced the love he brings when supporting them in making the generous decision to donate life on their most difficult day. He has built many bridges of trust – one family at a time – significantly impacting and bettering our community. MTN is eternally grateful for Rev. Ruffin as his joyful presence has made the same profound difference in every one of us.

In recognition of Black History Month, Rev. Ruffin shares his favorite poem, “Still I Rise” by Maya Angelou.

MTN Community Spotlight: Imagine the impact of a generous donation

January 23, 2024/in

Blog,
News

/by Midwest Transplant Network

A middle school multipurpose room with a performance stage. Rows of black stackable chairs with slips of purple paper to mark seat numbers for the ticketed show. Long tables filled with brightly wrapped candy, sweet treats and the smell of spun sugar from a cotton candy machine complement the anticipation.

It’s opening night.

The lights dim.

The curtain rises.

The show begins.

“Come with me, and you’ll be in a world of pure imagination. Take a look and you’ll see into your imagination.” ~ Willy Wonka & The Chocolate Factory

Students and families at Harmony Middle School in the Blue Valley School District raised $2,856 from their spring musical, “Willy Wonka,” and donated the ticket sales to Midwest Transplant Network in honor of a donor hero family.

Annually, the student cast gets to nominate a charity. Students give a quick speech about an organization that’s had an impact on them, and the cast votes to choose “the most deserving.” David Davis, theater director at Harmony Middle School, said this is the 15th year of the benefit performance.

Five people standing center stage in front of a curtain. Fourth person from the left is holding a microphone and reading from a sheet of paper.

The Dirks family and Midwest Transplant Network staff are center stage during intermission at Harmony Middle School in the Blue Valley School District.

This year, students Belle and Beau Dirks successfully advocated for MTN with their personal story. Their father, Josh Dirks, passed away in November 2021 and became an organ donor hero by way of his heart.

During intermission, the Dirks family took center stage – Belle and Beau, mom Tiffany, and sister Ella. Belle shared their organ donation journey from written remarks while Beau held a large, framed photo of their dad. Their grandparents, younger sister and family friends were in the audience, beaming with pride and emotion.

“…The day he went to heaven was the hardest day of my life. We were in his hospital room when they told us that he wasn’t coming home. There were so many people in the room, but I remember one lady, Ms. Gretchen, from Midwest Transplant Network. She hugged all of us and told us that it was going to be ok.

“…She told us what it means to be a donor, how important his decision was, and how he would be able to help someone else continue to live. Then, she laid a blanket on him that had the word HERO printed on it.”

Belle shared more of their story, then closed with a clear call to action:

“I know it is a difficult decision to become an organ donor, but I encourage you to sign up. Their motto is GIVE HOPE, SHARE LIFE — and that is what you do when you sign up to be an organ donor.

“You never know, you just might become a HERO in someone else’s story – Just like my daddy did!!”

The audience applauded.

The lights dimmed.

Five people are center stage during intermission at a school musical, posing for a photo.

The Dirks family and MTN staff after presenting a contribution to Midwest Transplant Network. From left to right: Tiffany Dirks, mom; Nichole Asquith, MTN; Beau holds a photo of Josh Dirks, father and donor hero; Belle and Ella Dirks.

And the show went on.

Midwest Transplant Network is appreciative to the students, families, teachers and staff of Harmony Middle School and their generous contribution to support organ, eye and tissue donation, and MTN is humbled to be a part of the Dirks family organ donation journey.

Please learn more about what it means to become a registered organ donor at mwtn.org.

Bringing Light to a Sometimes-Bittersweet Season

December 3, 2021/in

Blog,
Events

/by Midwest Transplant Network

The holidays can evoke memories of time spent with loved ones and family traditions. This time of year can be particularly difficult for those who have lost loved ones, including families and friends of all donor heroes.

Toward the end of each calendar year, amid many holidays, Midwest Transplant Network hosts Hope for the Holidays, a time to remember donor heroes and celebrate the gift of life. This year, families will be treated to a special screening of the holiday movie “Elf” in Kansas City’s historic Union Station.

“Hope for the Holidays is a chance for families of our donor heroes to come together in remembrance and celebration during what can be a very difficult time of the year,” said Donor Family Services Coordinator Denise Cooper. “We are honored and humbled to spend time with donor families each holiday season.”

Donor families will bring an ornament to honor their loved one that will hang on an MTN-branded holiday tree complete with presents underneath sporting “Give Hope. Share Life.” wrapping paper. Union Station guests from all over the country can see the tree near the movie theater concession area through Monday, Jan. 3. Along with enjoying the beautiful tree, they will have a chance to join the national organ, eye and tissue donor registry at registerme.org/hopefortheholidays and share hope this holiday season with the 100,000 individuals waiting for lifesaving and life-enhancing transplants.

From everyone at MTN, we wish you a peaceful holiday season.

MTN Donor Family Coordinators

November 16, 2021/in

/by Midwest Transplant Network

Donor Family Coordinators Kara Gartner (left) and Denise Cooper

This week, we’re highlighting Midwest Transplant Network’s Donor Family Support program — made up of caring staff members who communicate with and provide care for donor families after their loved one’s donation. In our first post, we heard from Donation Communications Coordinators Jessica Cleary and Lindy Maska. For today’s post, Donor Family Coordinators Denise Cooper and Kara Gartner answered a few questions about their roles.

Briefly describe what Donor Family Coordinators do.

Donor Family Coordinators are responsible for all communication between donor families and recipients. We also provide recipient follow up to donor families upon request.

Another big part of our job is planning all the celebrations and special events for donor families.

For how long will MTN support a donor family after their loved one’s donation?

MTN’s formal Donor Family Support program is two years, but all families have the opportunity to stay on our mailing list indefinitely. Families are also able to rejoin at any time by filling out a request on our Serenity Newsletter page at mtn.org/serenity.

What are donor family events, and how can families get involved?

Each year, MTN hosts a variety of donor family days for all our donor families to attend. In recent years, we have held events at the Kansas City Zoo, Sedgwick County Zoo, Warm Springs Ranch and the Joplin Pumpkin Patch. MTN donor family events are a great way to meet other donor families while also remembering your loved one.

We also host our Celebration of Heroes in Kansas City, Wichita, Joplin and Columbia. The Celebration of Heroes is a way to honor organ, eye and tissue donors and their families. MTN presents each family with a beautifully handcrafted stained-glass heart to honor their loved one. Families also have the opportunity to pin their quilt square on the Donor Memorial Quilt during the celebration.

Information about how to register for the next celebration and donor family events will be in the Serenity newsletters and on the MTN website.

How can a donor family communicate with their loved one’s recipient(s)? Similarly, how can a transplant recipient communicate with their donor’s family?

Correspondence with your loved one’s recipients has no time limit. We will continue to forward communication to both parties regardless of a donor family’s participation in our Donor Family Support program.

When a donor family decides to write to their loved one’s recipients, they would send the letter to MTN. We then forward the letter to the recipient’s transplant center, and it is forwarded to the recipient.

When a recipient writes to their donor’s family, they give the letter to their transplant center coordinator. The coordinator then forwards the letter to MTN, and we then send it to the family.

Can donor families who initially do not wish to receive support from MTN later connect with the Donor Family Support program? If so, how?

Yes, the opportunity to receive support from MTN is always available. If at any time a family would like to be added to our newsletter mailing list or has any questions, they can call us at 913-262-1668 or connect with us through our website at mwtn.org/contact-us.

What is the one thing you’d want to tell someone who knows nothing about your work?

It is an honor to support donor families whose loved ones have given the gift of organ, eye or tissue gifts.

Why should people say “yes” to organ, eye and tissue donation?

A YES to donation is one of the most selfless and generous things a person can do. Donation can help someone’s child, sister/brother, mother/father, etc. and give a stranger the gift of life or enhance their lives with tissue donation. These gifts cause a ripple effect, touching so many other lives.

MTN Donation Communications Coordinators

November 12, 2021/in

/by Midwest Transplant Network

Photo of MTN's Donation Communications Coordinators

Donation Communications Coordinators Lindy Maska (left) and Jessica Cleary

This week, we’re highlighting Midwest Transplant Network’s Donor Family Support program — made up of caring staff members who communicate with and provide care for donor families after their loved one’s donation. In this first post, we hear from Donation Communications Coordinators Jessica Cleary and Lindy Maska.

Briefly describe what Donation Communications Coordinators do.

We coordinate follow-up with all our organ, eye and tissue donor families to provide information about the gifts their loved one was able to donate. We also coordinate follow-up with the clinical staff involved in the donation so that they can see the impact their work has on saving and improving lives. After the initial donation, we provide ongoing support to donor families as we continue to remember and appreciate their loved one’s legacy of providing hope and life to others.

How many letters do you send out to families each month? To transplant centers? To donor hospitals?

There is a lot of variation in the number of letters sent out weekly, but very roughly:

We send about 170 tissue and organ outcome letters out to families each month.
We send around 800 follow-up letters each month to families three months, six months, one year and two years after their loved one’s donation.
We send about 750 letters to donor hospitals per month.

How do Donation Communications Coordinators work with other members of the Donor Family Support Program to provide ongoing support for donor families?

We help with the planning and execution of events for our donor families as well as work with the Donor Family Services Coordinators to ensure families receive any additional support they may need, from donor hero bracelets to grief resources.

What is the one thing you’d want to tell someone who knows nothing about your work?

For many families, knowing who their loved one was able to help through donation provides a great deal of hope in a difficult time as they realize that their loved one’s legacy lives on.

What are some typical degrees and/or career paths staff members pursue before joining the Donor Family Support Program?

There is really no typical degree staff members pursue before joining the Donor Family Support Program. The most important quality of someone joining our department is a desire to help others through their grief journey.

Why should people say “yes” to organ, eye and tissue donation?

The opportunity to help others through donation is more unique than many people realize; not every person who says “yes” will necessarily be a donor. However, by saying “yes,” you provide hope to the thousands of people who are awaiting transplant.

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