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 >

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.

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