An unexpected bond

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Latral

Latral, blood stem cell recipient

Latral always knew helping others was her calling, which explains her 20 years of experience in the medical field. She is the head dialysis technician at Virginia Commonwealth University Health System. In 2014, Latral and her husband, Norman, were soon to celebrate their second anniversary with a romantic getaway. Latral fell ill and knew something wasn’t right. Excruciating pain led to a canceled getaway and a trip to the emergency room instead. Latral thought she may have an ulcer, but it proved to be something much worse.

Latral was then diagnosed with acute myeloid leukemia (AML). She was determined to get this behind her, so she could go on with what she felt she was meant to do in this world, taking care of others. With further appointments, Latral learned her cancer had taken over 98% of her body, devouring her red blood cells.

“How long will I be here?” she asked the nurse from her hospital bed.

Without immediate chemotherapy, she had a 4-6 week prognosis. The nurse patted her head, as she was going to be there awhile. Latral longed to get back to her patients, taking their vitals, double checking their monitors, praying with them, and more.

Some days, she slept 16 hours. She was always in pain, from head to toe. Chemotherapy wiped out her entire immune system. After chemotherapy, Latral would need a blood stem cell transplant. At this point, her friends, family, community, and even strangers knew her story. It was no secret that she needed a blood stem cell donor, but it was also no secret the chance of finding one was low. Her siblings were not matches, and Latral knew what a stranger would have to go through to help her.

“Who had that kind of time?” she thought.

Latral turned to prayer. She prayed for herself, and her potential donor. Against all odds, a donor stepped up. This donor was a perfect match for Latral.

The chemotherapy wiped out her leukemia, but unfortunately, when she was ready to have her blood stem cell transplant, Latral’s leukemia returned. Nine months later, after her second round of chemotherapy, she was ready to receive her new blood stem cells, and her donor was also ready to donate.

The operation was a success.

“Who was this individual?” she thought, as she prayed for their healing as much as she prayed for her own.

Raykell

Nearly a decade ago, Raykell had a very close friend in need of serious help. Her young son needed a blood stem cell donor. Raykell joined the Be The Match Registry® in hopes of being his match, but unfortunately, she couldn’t help. The young boy passed away soon after. Fast forward to 2014 and Raykell found herself at church during a Be The Match Registry drive. Her pastor was encouraging people to join the registry and explaining the importance of people of color being blood stem cell donors. She didn’t stay long, as she knew she was already registered.

The Tuesday following that service, Raykell got the call from Be The Match. She was potentially a match for someone in need. While on the call, fear took over Raykell’s body. Her biggest concern was how much donating may hurt. While listening through the phone, Raykell was convinced she would say no. She was currently in a bad family situation, and fear was getting the best of her.

Raykell, blood stem cell transplant donor (third from left), with her transplant nurses

But then, something different happened. In that same moment, Raykell felt God speak to her, telling her he had prepared her for this. Suddenly, her faith took over, and all of her fear diminished. She said yes, and went through with what she now calls an “experience of a lifetime.”

Raykell’s initial testing was a long process. All she knew about the patient she was about to help is that she had leukemia. Going into her donation, Raykell was nervous about being awake and worried about being in pain. The nurses made the process easier than expected, and she overall had a good experience. She felt very tired afterwards, but returned to work two days later without difficulties. A lot of people told Raykell how proud they were of her for agreeing to go through with donating her blood stem cells. Many also shared they would not have been able to go through with it as she had.

Coming together

After the initial waiting period, Latral was allowed to collect her donor’s information. She learned her donor’s name and location, and was finally able to reach out to Raykell. In 2015 the two of them connected via phone, and from there, a friendship began. They became fast friends, talking on the phone daily, and looking forward to meeting for the first time.

“I had to ask her what made her make such a sacrifice for someone she did not even know.” said Latral.

“I did not know I would feel so grateful for going through this experience. The best part was hearing my recipients voice for the first time, saying ‘Thank you so much for giving me another chance at life.'” She shares how Latral’s family has thanked her and made her feel as if she has done something remarkable. She feels God prepared her all those years ago to help someone in need.

“It didn’t matter that I didn’t know who it was. God knew.” shared Raykell.

In 2018, Latral and Raykell were given the opportunity to meet for the first time at the Be The Match New York Soiree in front of a room full of Be The Match® supporters. The photos of the two of them embracing for the first time are more than words can describe, and something nobody who witnessed it will ever forget.

Now, an indescribable bond between two women has begun.

Latral (left), meeting her blood stem cell transplant donor, Raykell (right)

Latral (left), meeting her blood stem cell transplant donor, Raykell (right)

Raykell (left), blood stem cell transplant donor, with her recipient, Latral (right)

Hearst Foundations award $200,000 grant to support the Amy Program

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Hearst Foundations award $200,000 grant to support the Amy Program

Be The Match® is thrilled to be the recipient of a $200,000 grant from the Hearst Foundations, awarded to Be The Match Foundation® to support the Amy Strelzer Manasevit Research Program (Amy Program). This increased investment from Hearst Foundations comes at a critical time as Be The Match Foundation expands support for Amy Scholars from 3 years of funding to 5 years. The Hearst Foundations’ commitment to the development of early-career investigators studying post-transplant complications furthers the

Amy Strelzer Manasevit, blood stem cell recipient

research that leads to critical discoveries, helping more patients live longer, healthier lives.

“We are proud to be associated with the Amy Program,” said Hearst Foundations Executive Director, Paul “Dino” Dinovitz. “The Hearst Foundations share Be The Match’s commitment to eliminating health care disparities and ensuring access to high-quality care for low-income populations. Supporting the development of young medical investigators will help create a broad and enduring impact on the nation’s health.”

The Amy Program is the only U.S. clinical research program dedicated exclusively to discovering treatment and prevention strategies for post-transplant complications while developing the next generation of transplant physician-scientists. Amy Program researchers dedicate their careers to:

  • Finding solutions that make it possible for thousands of patients to avoid dangerous post-transplant complications
  • Improving treatments to help patients overcome complications like relapse, infection, and graft-versus-host disease

The Hearst Foundations’ grant will help these investigators establish their labs, build their portfolios, and publish the results that position them for tenure-track positions and future funding. This investment in research is key to raising the rate of “event-free” survival for our core patients by 25% over the next five years.

To learn more about how you can provide critical funding to help improve outcomes for patients in need of a life-saving blood stem cell transplant please contact Amy Conner at aconner@nmdp.org or (763) 406-8748 | Toll Free: (800) 507-5427 Ext 8748.

About the Hearst Foundations

The charitable goals of the Hearst Foundations reflect the philanthropic interests of William Randolph Hearst, with a focus on ensuring that people of all backgrounds have the opportunity to build healthy, productive, and inspiring lives. The William Randolph Hearst Foundation and The Hearst Foundation, Inc. are independentprivate philanthropies operating separately from the Hearst Corporation.

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: 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.

Little Emilie!

Posted January 16th, 2018 by Be The Match and filed in Patient Stories
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Little Emilie!

At 9 months old, Emilie Meza was diagnosed with acute myeloid leukemia and her family was told that her best hope for a cure would be a marrow transplant. She is now 1 year old, and has not found a match on Be The Match Registry®. After searching for a marrow match, her doctors and family made the tough decision for her to receive a haploidentical marrow transplant from her father, Eduardo Meza. A haploidentical transplant comes with extra precautions, as this means he was a half-match to Emilie, not a full match. While recent outcomes of haploidentical transplant are promising, many marrow transplant doctors prefer a fully matched adult marrow donor over a haploidentical marrow donor. But this was the best option available for Emilie.

Emilie’s family continues to encourage others to join the registry and support Be The Match® so that other families don’t need to make the tough decisions they have regarding alternative treatment options. Emilie received her marrow transplant from her father, and is now continuing to recover with her family and doctors by her side. You can get frequent updates on her recovery from their facebook page, Emily Meza’s Bone Marrow Transplant Journey.

Please consider signing up for a monthly financial gift to help patients like Emilie find a fully matched donor on Be The Match Registry. Your financial support helps add more potential marrow donors to the registry, fund advancements in marrow transplant science and provide relief to patients and families facing financial barriers to treatment.

Give today!

 

A Life-Saving Talley

Posted November 15th, 2016 by Be The Match and filed in Donor Stories, News, Patient Stories
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37 seasons. 256 wins. One national championship. More than 70,000 potential lives saved. These are just a few accomplishments of Andy Talley, former head football coach of the Villanova Wildcats. Talley retired from coaching following the 2016 season, but his commitment to saving the lives of those suffering from blood cancer continues long after he walked off the field for the last time.

Answering the Call

In 1992, Talley was listening to the radio when he heard a fact that would change his life: Every three minutes, someone is diagnosed with a blood cancer, like leukemia or lymphoma. For tens of thousands of these patients a bone marrow or umbilical cord blood transplant could be their cure – yet only half receive the potentially life-saving transplant they need.

“When I heard the devastating odds of those in need of a transplant, I immediately knew that I had to do something,” Talley said. “With 90 young healthy football players on my team and the power of collegiate football behind me, I knew I could recruit donors and hopefully make an impact.”

Coach Talley at presenting Be The Match with a $125,000 check

Coach Talley presenting Be The Match with a $125,000 check

Recognizing that his young and healthy football players had the potential to become marrow donors, and use their clout on campus to recruit others to join, Talley set out to educate his players and the community about the opportunity to save the life of a stranger by joining the Be The Match Registry®.

A Team of Ideal Donors

Talley had an important audience on his team. 18-24 year old males are the ideal bone marrow donors. In general, the younger a person is, the healthier their marrow and because men tend to have more body mass than women, they have more marrow to give.

Additionally, since patients in need of a transplant are more likely to match someone who shares their ethnic ancestry, the diversity of his team played an important role, too. Currently, African American patients have the lowest odds of finding a match compared to all other populations and make up only 6 percent of the registry, a fact that stunned Talley.

Beyond recruiting his players to join the registry, Talley began hosting donor registry drives on the Villanova campus and raising funds to cover the costs of tissue typing. At every drive, Talley emphasized how easy it is to join the registry and potentially save a life—all it takes is a swab of cheek cells; no blood is drawn. In 2008, Be The Match® approached Talley with the idea of working together to expand his on-campus drive efforts and the “Get in the Game. Save a Life” (GITG) initiative was born.

Spreading the Word

Since then, more than 75 other college football programs have enlisted to participate in GITG, which has led to nearly 71,000 new registry members, more than 300 of whom have matched with and donated to a patient in need.  One of these donors is Chicago Cub and former Villanova football and baseball star, Matt Szczur, whose donation story was recently featured by ESPN.

“Coach Talley gave me the opportunity to save someone’s life,” Szczur said. “What’s more motivating than that?”

In addition to his involvement with the GITG initiative, Talley also runs The Andy Talley Bone Marrow Foundation which has donated more than $375,000 to assist with covering the costs of adding new members to the registry.

The Commitment Continues

It’s important to Coach Talley that his mission of getting more committed donors on the registry doesn’t retire when he does. His successor, Assistant Coach Mike Ferrante, sits on The Board of Directors of The Andy Talley Bone Marrow Foundation, and he will continue to share the message that anyone can save a life. And Talley plans to deepen his involvement supporting this worthy cause after his final season with the Wildcats.

“With a lot more time on my hands, I am looking forward to increasing awareness and recruiting a ton of coaches to join our Get in the Game initiative,” said Talley. “It is my dream to have every college football team nationwide host a drive and join our passion of saving lives.”

To join the registry visit Join.BeTheMatch.org/GetInTheGame2017

Jade is a recent transplant recipient. This is her story.

Posted October 8th, 2014 by Be The Match and filed in News
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fight-transplantday2Super Wonder Jade

“Never. Ever. Givvvve up! Never. Ever. Givvvve up!” This is the cheer of smiling, bubbling, 4-year-old Jade. What is she cheering for? Courage to beat her cancer.

A fighter from day one, Jade’s journey began with unexplained episodes of limping, joint pain and fever. An otherwise healthy toddler who could run circles around her older brother, Jade’s parents, Jaytoe and Taneika, were puzzled. Multiple visits to the emergency room and they still didn’t know what was wrong.

On January 5, 2012, a few days after celebrating the New Year, Jade was admitted to the hospital for a persistent eye infection. Trusting their gut, they asked for additional tests. “We figured while we were there, why not get to the bottom of it once and for all,” says Taneika.

Eager to help, Jade’s doctors listened to the list of symptoms and explored many options. Ultimately, the news was devastating. Little Jade had cancer—acute myeloid leukemia (AML). “We were floored. It was hard to swallow because she wasn’t even two years old yet. We were still getting to know her and watch her grow, but hearing this diagnosis almost felt like a death sentence,” says Taneika.

wonderkids2Eight months and five rounds of chemo later, Jade was in remission. Like any parent, Taneika was overjoyed, but she was worried that it was too good to be true. They filled their days with fun activities like visiting museums, baking cookies, painting and dancing to Jade’s favorite tunes. “Our family had a renewed sense of living life to the fullest, but I always felt like I was looking over my shoulder.”

When Halloween arrived, Jade was old enough to help pick her costume. “She absolutely loves dressing up and equally loves ‘saving the day,’” says Taneika. “Familiar with traditional princess costumes she was soooo excited to see the warrior princess Wonder Woman costume.” Completely thrilled, Jade declared herself “Super Wonder Jade” with powers to fight the “bad guy cells.” The nickname stuck and Jade continues to call herself this today.

Relapse

On March 19, 2014, just a few weeks shy of celebrating Jade’s fourth birthday, her leukemia resurfaced. “It was harder to hear the news the second time. We thought we had it beat, but we didn’t,” says Taneika.

Immediately, Jade’s doctor’s explained that a marrow transplant was her best shot for a cure. “They told us that relapsed AML was more difficult to treat. They also told us the likelihood of finding an unrelated donor was very low because of how uniquely made Jade is, because of our ethnic backgrounds.” The frightened family knew it would be a tough battle, but brave Jade took the news with grace.

“Jade returned to the oncology floor like she owned the place,” says Taneika. “Wandering the halls, serenading the staff at the nurses’ station, and quickly finding her place in the art room.” But, despite the familiarity, things were different. Jade was a big girl now. “The halls were the same, the staff was the same, but Jade had the ability to ask questions like: Why are we here? When are we going home? Why can’t my friends come over?”

Thankfully, Jade’s cheerful nature quickly won over and she settled into her routine filled with activities such as singing “Let It Go” as she said good bye to her hair, swishing “magic mouthwash” to lessen the pain of mouth sores and earning more than 500 beads of courage—one for every procedure.

In her journal, Taneika wrote, “Jade was so playful, so brave and so strong throughout her treatment, even after a rough chemo session. And she would just say, ‘I’m smiling for me.’ We absolutely believe that her spirit and attitude helped her heal… helped strengthen our faith and our resolve that she would be cured.”

day1transplantadmission2Re-birthday

Finally, on July 3, after months of searching, transplant day arrived. Unable to find an adult donor, doctors located a 5 out of 6 cord blood match.

Pronounced Jade’s “re-birthday,” the special day was filled with celebration banners, cupcakes and Jade’s favorite thing in the world—music. “She proceeded to dance for an hour straight, grabbing our hands and pulling us to the dance floor one by one,” says Taneika.

Exhausted, Jade finally fell asleep as nurses hooked up an IV pole for her new, life-giving cells to drip slowly into her body. “When you hear the word ‘transplant’ you think surgery…sedation…but it was not like that at all,” says Taneika. “The whole process took less than two hours.”

The Jade Parade

Twenty-four days after transplant, Jade was allowed to make her first trip home. Having seen parade-like, end-of-treatment celebrations before, Taneika was overcome with emotion as Jade exchanged her Beads of Courage for her requisite sunglasses, high filtration mask and tiara. “She went out in style, leading the staff decisively toward the elevator cheering, ‘I’m brave, I’m strong, I’m ready for whatever comes along,’” says Taneika.

By day 29, Jade was 100% donor cells. She did experience some early setbacks with graft versus host disease (GVHD) and liver damage, but Jade is currently healthy, happy and cancer free.

snowday2Forever Thankful

Taneika is at a loss for words when thinking about the gift their family received. “Thank you seems inadequate… We wish there were words beautiful or accurate enough to fully express our gratitude for this incredible gift — for saving our daughter’s life and keeping our family whole,” she says.

“With each milestone that Jade reaches, every smile that she cracks, each hug that she shares with us, we are eternally grateful to the mother who made this possible when she donated her newborn baby’s cord blood, to Be The Match for facilitating her gift, and to Jade’s medical team for their incredible support. We thank God for them all. We will certainly be reflecting on that this holiday season and hoping not only for Jade’s continued remission, health and overall rock-stardom, but also for a match and a cure for all of the parents, grandparents and children who need it.”

The family is also grateful people like you who support Be The Match by making a financial gift. “Thank you for helping to give meaning to Jade’s journey. We often ask and wonder, ‘Why Jade? Why did this happen to our sweet girl?’ There will never be a satisfactory answer to those questions, but we are so heartened that her story, her spirit inspired you to make a gift that will help heal another family like ours that has been turned upside down by cancer.”

Help kids like Jade. Give a child the gift of life.

Your frequent flyer miles could help a patient

Posted January 6th, 2010 by Be The Match and filed in Donor Stories
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The Delta SkyMiles® program has chosen Be The Match Foundation® as one of its 2010 SkyWish Charity Partners. That means when you fly Delta, you can donate your miles to Be The Match Foundation.

Be The Match Foundation will use your donated miles to fly marrow transplant patients and their caregivers to transplant centers free of charge. This service provides tremendous relief to families burdened by treatment costs.

How to donate miles
Send a request to the SkyMiles program including your name, SkyMiles number, SkyWish charity name, donation amount and telephone number. Donations must be a minimum of 1,000 miles and are not tax-deductible for SkyMiles members or Delta.

Take action
It can take up to 200,000 miles to transport a family to a transplant center.  Please donate yours today.

Links

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African Ancestry

Patients are more likely to find donor matches within their own racial or ethnic background. For African Americans specifically, there is more genetic diversity than any other race. However, the number of black donors on the national registry is still low.

African Ancestry is partnering with Be The Match to drive awareness and registration among the black community for this important cause.  Learn more about African Ancestry and how they can trace your ancestry back to a specific present-day African country of origin.

Be The Match Foundation

Be The Match Foundationis the new name of The Marrow Foundation. Their work with families, corporations and other partners has raised millions of dollars for patients in need. With your support, Be The Match Foundation will continue to attract, engage and motivate people who want to save a life.

Center for International Blood and Marrow Transplant Research (CIBMTR)

CIMBTR Is a research partner of the National Marrow Donor Program committed to increasing application and access to cellular transplant therapy, as well as improving outcomes. The ultimate goal is to help more transplant patients live longer, healthier lives.

Hendrick Marrow Program

Rick Hendrick is best known for his NASCAR championships and Nextel Cup Series victories as the owner of Hendrick Motorsports. In 1996, his winning ways broadened beyond the Winner’s Circle when he became a champion for people facing life-threatening diseases that can be treated with a bone marrow transplant.

Hendrick Marrow Program of the Be The Match Foundation helps secure private resources to support the work of the National Marrow Donor Program (NMDP) and its Be The Match Registry.

Since 1997, the Hendrick Marrow Program has raised more than $7 million to recruit new members to the marrow donor registry and help patients pay for transplant-related costs.