Ed Plass and his impact with Be The Match

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In December of 2011, at age 68, Ed underwent an unrelated cord blood transplant to treat acute myelogenous leukemia, a life-threatening blood cancer.  Transplant is a rigorous treatment that requires a lengthy hospital stay and months to years of recovery. As a survivor of this intensely difficult treatment, he has dedicated much of his life to helping others going through the same process.

Ed’s wife Kate was his primary caregiver and a huge part of his transplant and recovery. She has stood by his side throughout this journey, and has also dedicated much of her time to advocating for Be The Match® with Ed. “Our oldest grandchild was 6 years old and the youngest was just 9 months when I had my transplant,” says Ed. “I’ve been able watch them grow up and they’ve had the chance to know their grandfather as a person, not a picture.” Many of Ed’s experiences with transplant, recovery, and advocacy have been a family effort.

Ed is part of the Be The Match peer-to-peer counseling program for transplant patients, helps edit educational and support material, and was on the Leadership Council for several years, helping with legislative advocacy, donor recruitment and tabling events. He speaks to other patients who are anticipating transplant about his own experience and helps ease their fears, answer their questions and provide the kind of encouragement that only a transplant recipient can give. Kate has also spoken at these events from a caregiver perspective. He meets with social workers and other staff members to ensure that they know how best to support patients going through the same treatment that he did.

It is difficult to explain the impact that Ed makes on the patients who look to him for support, except to say that in this volunteer role he uses himself and his experience with transplant to connect with people who desperately need support.

Ed says his transplant has given him the gift of life and the gift of time. And he’s making the most of it. In addition to spending time with family, he is very active in his church and has volunteered more than 400 hours with Be The Match, connecting with patients, transplant centers and legislators. He and his wife have been very generous with financial gifts to Be The Match as well, as they understand that supporting patient assistance, recruitment and research is so important.  “After my transplant, I’m more aware of the issues which people [like me] can face, and I’m trying to give back,” Ed says.

We need more people to make an impact like Ed, and support patients like him. You could make an impact by signing up for a monthly gift. A reliable monthly gift will help more patients receive marrow transplants, expand the Be The Match Registry ®, and provide financial resources to patients and families in need Join us in our life-saving mission and give a monthly gift today.

Volunteer Spotlight: Justin and Kristin Akin

Posted April 16th, 2018 by Be The Match and filed in Volunteer Stories
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For Kristin and Justin Akin, being a volunteer Be The Match® courier lets them not only act as a bridge between patient and donor, but also allows them to honor the memory of their two sons, Matthew and Andrew.

The Akin family

In September 2007, three-month-old Andrew was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) and needed a marrow transplant. Kristin and Justin had their oldest son, Matthew, tested to see if he would be a suitable match, but he was not.The Akin’s turned to Be The Match to find an unrelated donor. Unfortunately, there was not a suitable adult match for Andrew on the Be The Match Registry®, but there was a cord blood match.

At six-months-old, Andrew received his first transplant.

Sadly, two months after his transplant, Andrew relapsed. His doctors once again searched the registry. Kristin and Justin were elated that this time there was an adult match. Andrew had his second transplant, just before his first birthday.

“I vividly remember being in the hospital and the coordinator walked into our room, letting us know that the blood stem cells had safely landed,” said Justin.

Shortly after the transplant, doctors informed the family that once again, it was not successful.

Kristin and Justin had their older son, Matthew, further tested, fearing he may have held the mutation as well.

The results were unimaginable.

Matthew, while healthy, also carried the HLH mutation and would eventually get the disease. Kristin and Justin found themselves in an unthinkable situation. Andrew was preparing for his third transplant and Matthew for his first.

Tragically, Andrew passed away in September 2009 at the age of 2. Matthew passed away months later in May 2010 at the age of 5.

Filled with grief, Kristin and Justin channeled their energy into helping others. They became volunteer couriers so they can help other families.

“Every time I go on a trip, it conjures up a lot of emotion,” Kristin said. “People ask me, ‘Why do you want to do this?’ I tell them Be The Match gave us hope. I am eternally grateful to Be The Match for trying to save my children’s lives.”

A donor-recipient meeting helps raise awareness among D.C. lawmakers

Posted April 3rd, 2018 by Be The Match and filed in Donor Stories, Patient Stories, Volunteer Stories
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On March 20, in Washington, D.C., a first-time meeting between a marrow transplant recipient and her donor brought about tears of joy and forged a life-long connection between two women. But the meeting also raised awareness about how Congressional support is vital to help future patients get the marrow or cord blood transplants they need.

Be The Match arranged the first-time meeting between transplant recipient Kate Jauch and her donor, Kyndess Eaggleston, who was identified as the best match for Kate from among the more than 19 million volunteer donors listed on the Be The Match Registry.

The day after their emotional meeting, both women shared their experiences with Members of Congress at several legislative briefings arranged by Be The Match. Kyndess and Kate each spoke about the importance of advocacy, program funding, and access to transplant for Americans with blood cancer and other blood disorders.

“I was fortunate to have found a match, and we must continue to grow the registry for those who will need a transplant in the future,” said Kate. “This is why we are urging policymakers to protect access to transplant through increased program funding.”

At the briefings, both women spoke to Members of Congress and their legislative aides about how increased funding is needed to optimize access to marrow transplantation and to improve outcomes, particularly for Americans who might have difficulty finding a match or for patients where a transplant is their only chance for a cure.

“It was very moving to meet Kate in person and know that this is someone I will forever be bonded to through the Be The Match Registry,” said Kyndess. “I encourage anybody eligible to sign up to be a donor. They make the process easy and knowing you could potentially save a life is incredible.”

How you can advocate to help patients who need transplants

The first-time meeting between Kyndess and Kate raised awareness among the many Member of Congress who attended the briefings that for Medicare beneficiaries, funding for bone marrow transplants fall short of the actual costs of care.

Advocates such as Kyndess and Kate are urging Congress to act swiftly to pass HR 4215, legislation to ensure that future Medicare payment for cellular transplant reflects the true costs of treatment, including cell acquisition, transplant and recovery for older Americans diagnosed with blood cancers or other disorders.

As described on the Be The Match legislative advocacy webpage, HR 4215 will reform reimbursement to hospitals for the cell acquisition costs using a methodology similar to that used for solid organs. This policy would have a very small impact on Medicare’s total spending, but would ensure patient access to life-saving care.

Learn more about how you can advocate on this and other issues affecting access to live-saving transplants.

Volunteers advocate for Be The Match on Capitol Hill

Posted April 3rd, 2018 by Be The Match and filed in Donor Stories, Volunteer Stories
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Abby West offers this advice about navigating two full days of meetings with lawmakers on Capitol Hill: “Wear comfortable shoes!”

On March 5th and 6th, Abby met with 17 federal lawmakers or their legislative aides to promote Be The Match’s mission to ensure that cellular transplantation is available for everyone needing it. In addition, Abby worked to educate lawmakers about the need for increased funding to support the national registry of volunteer marrow donors.

Meeting with U.S. Senators and Representatives was new to Abby, and she says the experience was both exhilarating and eye-opening. “I’m always seeking new ways to be of service to the cause,” she says. “This was a new one that would further educate me about what Be the Match does to advocate for our future patients.”

Abby donated peripheral blood stem cells to a patient four years ago, which she says moved her deeply and motivated her to want to do more to support Be The Match. She joined the Be The Match Board of Directors a year after donating.

She reports that lawmakers were receptive to hearing about the mission of Be The Match. “Approaching politicians with our unique and unassailable critical care and life-saving mission meant hearing nothing but support,” she says.

Abby wants others who support Be The Match to not be shy about contacting their Congressional representatives, and notes that while in-person meetings may have the most impact, sending letters and e-mail messages, and making phone calls can all be effective, too.

Abby says that much of her conversations with legislators focused on urging them to co-sponsor and then act to pass HR 4215, which is legislation to ensure that future Medicare payment for cellular transplant reflects the true costs of treatment. Currently, Medicare rates do not cover the total costs hospitals incur when providing a bone marrow or cord blood transplant to Medicare-eligible patients.

Abby says that she plans to leverage her new connections with D.C. legislators to continue urging them for “more dollars to innovate and break down barriers preventing access to life-saving transplants.”

Be The Match has online information about how you can advocate for our live-saving mission, including ways you can urge your Congressional representatives to support HR 4215.

Access the Be The Match legislative advocacy web pages >

Super Star Advocate: Becky Tombleson

Posted February 20th, 2018 by Be The Match and filed in Volunteer Stories
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“Advocacy and policy is daunting, but not impossible and I’m buoyed by the sense that I can make a lasting impact in laws and policies that effect patients and their access to care.”

Becky, legislative advocate

Becky Tombleson is a clinical pharmacist with over eight years of experience at Moffitt Cancer Center in Florida and has worked in the Blood and Marrow Transplantation program for most of those. Becky got involved with the National Marrow Donor Program® (NMDP)/Be The Match® because, “as the years go by, one thing remains critical to my patients and their outcomes: access to care. That care takes on many shapes as a prescription that gets denied or a transplant that gets delayed. I have become passionate about access to care watching our patients struggle with financial burdens that complicate their lives and inhibit their outcomes. Our patients are fortunate to have vocal advocates and allies in NMDP and Be The Match.”

Last year Becky traveled with the American Society of Blood and Marrow Transplantation (ASBMT) and the NMDP in an effort to garner support from our lawmakers in Washington for the Protect Access to Cellular Transplant (PACT) Act, HR 4215. When asked about her experience and advice for new advocates, she said, “at first, I was very intimidated! I like to follow policy in Washington closely and as much as I tried to calm myself down, our lawmakers still seem like celebrities to me. Once I was able to visit with a few, I realized I was able to play an important role in their education and how much of an impact that makes on our patients. Our lawmakers are very educated in a number of ways but lack the insight I have as a clinical pharmacist – I found them grateful to learn of the impact access to care has on our patient’s lives.”

Becky is passionate about policy change because, “as time has progressed, I see advocacy and policy as a way to reach out beyond my institution, to patients I will never meet, and hopefully make the process an easier one for them. There are so many ways to impact patient care and I think my focuses have just gone a bit broader than before.”

Many people have never met a lawmaker before, but don’t worry because Becky has great advice. “Think through what you want to say and what is likely to leave a lawmaker with the clearest sense of what you do, what the patient need is, and how the legislation you’re discussing can make that a reality. Our lawmakers care about the interests of their constituents and want ultimately, something that will be beneficial to their lives. Our lawmakers are also involved in many different initiatives and bone marrow transplant is a complicated issue that many people don’t understand that lack experience with it. Also, try to stay calm if you’re easily dazzled by some lawmakers like I was!”

Becky also took the time to get others involved. “I was very fortunate to collaborate at Moffitt Cancer Center with our Federal Legislative Affairs Director. We were able to discuss in detail the PACT Act and how it could not only benefit our patients, but others as well. We both agreed that our institution sets a high standard in caring for patients that depend on access to transplant and that should be communicated to our lawmakers. We were thrilled to see the support we had and the impact that has had on the PACT Act. As one of the most nationally renowned cancer centers in America, we knew a letter of support or call could make all the difference.” And it did. Within a week Becky and her efforts added two co-sponsors!

You too can be a super star like Becky! If you want more information on how you can be a volunteer leader and super advocate, email Jess Knutson.

Volunteer Spotlight: Tom Teach

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Tom Teach’s commitment to Be The Match® started when his 4-year old grandson, Ben, was diagnosed with ALL and AML. Ben received a bone marrow transplant and for nearly six beautiful months after, Ben laughed and smiled as a cancer-free little boy. But when Ben’s leukemia returned, nothing could be done. Tom and his family said goodbye to their sweet boy in February 2015.

Today, Tom is a dedicated member of the Foundation’s board and a passionate champion of Be The Match. Tom is a Navy veteran and he and his son spoke at the Naval Academy and with the help of the Department of Defense, recruited more than 700 potential donors to the Be The Match Registry®. Tom continues to participate in leadership roles at registry drives at the Naval Academy. As a Notre Dame alum, he utilizes his contacts to raise awareness and help recruit registry members at Notre Dame games. He has also extended his efforts to Goshen College and Bethel College.

In addition, Tom has become a tireless fundraiser for Be The Match Foundation®. He helps acquire key sponsorships for the Be The Match Walk+Run event and participates with his friends and family as “Team Ben.” Over the past three years, his team has raised more than $165,000 for the Chicago Be The Match Walk+Run.

“Tom’s service to Be The Match is an excellent example of true volunteerism,” says Nicole Kersting, Senior Development Manager at Be The Match. “In addition to his recruitment and fundraising efforts, he is willing to step in with any in-kind request large or small through his foam packaging company.”

The impact Tom continues to have on patients and their loved ones is huge. Due to Tom’s efforts, more patients are able to get a second chance at life.

Looking to get involved? Find a volunteer event near you.

Meet Lorayne, Peer Connect volunteer

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Lorayne, transplant recipient and Peer Connect volunteer with her grandchildren

Lorayne was diagnosed with acute myeloid leukemia (AML) in October 2011, and 5 months later received a transplant from a donor in Germany.

She remembers how bewildering it was to get her diagnosis and how hard it was for her to process all the complexities of getting a transplant.

So she was grateful that her transplant team didn’t just focus on her medical and physical needs, but also helped her connect with someone who had been through the transplant process. That person was Wendy, a Peer Connect volunteer, who helped Lorayne address her fears and anxieties about transplant.

And now Lorayne wants to give back and help others going through the transplant process. She has been a Peer Connect volunteer for about 4 years now.

“Everyone’s journey is difficult,” she says. “I feel like they want to know that they can do this.”

 

Forming special bonds

Be The Match started its free Peer Connect program because transplant patients and caregivers reported that they benefited a great deal from talking with someone who’s “been there” and “gets it.”

“A lot of people just need to talk,” Lorayne says. “I understand what they’re going through. I had all those fears and worries, too.”

Lorayne, now a grandmother of 7 and 5-year-old grandsons and a 2-year-old granddaughter, was a kindergarten teacher. Because of her profession, she says that she knows how to be an active listener, which she says is critical to transplant patients and caregivers. “As a teacher, I think I have the temperament,” she says. “I’m encouraging and empathetic.”

Some people have frustrations with their family or their medical center, she says. One way Lorayne helps people is by giving them a chance to verbalize those frustrations, which allows them to unburden themselves.

“My experience as a volunteer is that people are so ready to talk ─ and need to talk,” Lorayne says. “They want information, they want their fears and anxieties addressed, and they want reassurance.”

Part of that reassurance for patients and caregivers is simply talking to someone who has successfully gone through the transplant process, says Lorayne. “I think back to my experience talking with Wendy. She got through it and she was alive. People want to know there is life after transplant.”

 

What to expect from the Peer Connect program

The Peer Connect program matches volunteers with patients or caregivers based on the request. Some people want to talk to someone who is close to their age. Other people may want to connect with someone who has the same disease or other life circumstance.

In one instance, Lorayne connected with someone who had the same type of graft-versus-host disease (GVHD) that Lorayne did. Talking with another person who also had to deal with GVHD of the liver helped that patient a lot, Lorayne says, but the connection was also a learning experience for Lorayne and their connection gave comfort to both of them.

Lorayne’s approach when assigned a Peer Connect patient is to email the person first, to arrange a convenient time to talk on the phone. The first call can be as long as needed, Lorayne says, and begins with Lorayne asking about their experiences and their current situation.

“As they’re able to talk, I’m able to share my experience with them,” Lorayne says. “They can expect a listening ear, a comforting volunteer, who will be there for them even beyond a phone call.”

Typically, Lorayne and her connections will talk again or connect by email a few more times. “As volunteers, we’re always there for follow up,” Lorayne says.

Request a connection

If you’re struggling with your transplant recovery, you are not alone. No matter where you are in the transplant process and recovery, and whether you’re a transplant recipient or caregiver, our Peer Connect program can connect you with a trained volunteer who’s been there.

Visit BeTheMatch.org/peerconnect to request to talk with a Peer Connect volunteer.

Or:

Volunteer Spotlight: Marcia Diefendorff

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Marcia Diefendorff first decided to get involved with Be The Match® when a family friend was fighting for their life and needed a bone marrow transplant in order to survive. She reached out and asked how she could help after learning about the marrow donation process and the great need for more donors to join the Be The Match Registry®.

Marcia began volunteering at local events throughout the Peninsula and South Bay Area in California where she educated people about Be The Match, the need for new registry members, and the importance of saving lives. It quickly became clear how talented Marcia was at teaching and interacting with people, which is no coincidence as she had been a teacher for many years.

Not only did Marcia volunteer around the time of her friend’s transplant, but she continues to stay extremely involved. You can still find Marcia at events two to four times a month and even up to four to five times a week during the busy season! Her dedication and generosity has not gone un-noticed. Marcia now trains other volunteers about the registration process, runs her own events, and continues to make meaningful connections with everyone she encounters.

“She improves every event she attends and is one of the most genuinely kind people I know. When I’ve called to thank her she usually says that she appreciates the call, but doesn’t do it for the thanks you’s,” says Amber, friend and former Be The Match Community Engagement Representative.

Marcia has made a huge impact already and continues to by volunteering for Be The Match. She has added many new potential donors to the registry, which provides patients with more hope and a chance at finding their life-saving match. Marcia’s dedication and years of service has earned her the Daily Point of Light Award as well as the title, Volunteer Ambassador of Be The Match.

If you’re a proud Be The Match volunteer like Marcia, share your support on social media with one of our volunteer badges.