After defeating blood cancer, Jeff wants to give back

Posted January 24th, 2017 by Be The Match and filed in News, Patient Stories
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Jeff’s whole life changed when he was diagnosed with blood cancer. After numerous treatments, his doctor told him that his best chance for a cure was a bone marrow transplant. His doctors turned to Be The Match in search of an unrelated donor. In January of 2015, Jeff had his transplant.

Jeff

Jeff, transplant recipient and Be The Match advocate

One year after receiving his life-saving bone marrow transplant, Jeff  has decided that an important and natural next step is advocating for others facing similar situations that he went through last year.

“I was inspired by having to face leukemia and fighting my way through the disease all the way to a successful bone marrow transplant,” Jeff said.

Currently, Jeff volunteers with Be The Match in the Peer Connect Program as a mentor for other marrow transplant recipients. Upon retiring from his law practice later this year, Jeff plans to fully enjoy his hobbies which include horses and music.  He also hopes to use his law background to help advocate with legislators and insurance organizations on behalf of transplant patients and their families.

Jeff says, “After staring death in the eye and coming through that, it felt natural that I would give back to the community and help in the fight to cure cancer as well as helping others who are going through it.”

 Get involved with Be The Match legislative advocacy

Act now: urge your legislators to continue funding Be The Match

Help Increase Funding for Life-Saving Transplant Programs

Posted January 24th, 2017 by Be The Match and filed in News
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We need your help to make sure that Congress remembers the importance of the programs that fund Be The Match®, the CW Bill Young Cell Transplantation Program (Program) and the National Cord Blood Inventory (NCBI).

Capitol Building

Capitol Building

For each $1 million the Congress adds to the Program funding, 10,000 donors can be added to the registry. For each $1 million it adds to the NBCI, we can add 667 cord blood units.  Please send an email or social media message to your congressional representatives to ask for increased funding for these life-saving programs. Act now: Urge your legislators to continue funding Be The Match.

Every dollar allocated by Congress goes to increasing the number of donors and cord blood units on the registry, helping patients navigate the complexities of the health care system, and supporting research to discover and apply the best therapies to improve patient outcomes. Further ethnic diversity in registry members is extremely important as we continue to expand access to treat more diseases, such as sickle cell disease.

Program Funding Determined by April

Congress has until the end of April to fund the federal government through the end of Fiscal Year (FY) 2017. Funding for the CW Bill Young Cell Transplantation Program, which the National Marrow Donor Program®/Be The Match® operates under a contract with the Department of Health and Human Services, is part of these appropriations.

The legislation will also fund the National Cord Blood Inventory (NCBI) through the end of 2017. The House appropriations bill under consideration would maintain funding for the CW Bill Young Cell Transplantation Program at $22 million and increase funding for the NCBI by $5 million to $16 million.

The Senate bill would maintain current funding for both the CW Bill Young Cell Transplantation Program and NCBI ($11 million).  We anticipate that Congress will resolve these differences in the coming months and pass final legislation in mid- to late-April.

At the same time, Congress will begin the process for funding the federal government for FY 2018.  This process usually begins with a detailed budget request from the President. Given the transition to a new Administration, it is unlikely that we will see a detailed budget before late April or May. The congressional committees overseeing appropriations, however, are likely to start considering specific spending levels well before that time.  Final legislation appropriating funds for FY 2018 is unlikely to pass before September and might even be delayed until December 2017.

Get involved with Be The Match legislative advocacy

You can make a difference in the lives of patients with blood cancers. We invite you to sign-up for our Be The Voice enewsletter to receive monthly updates on our advocacy efforts and how you can get involved to support our legislative advocacy efforts.

 

 

New congress to address issues that will impact access to transplant

Posted January 24th, 2017 by Be The Match and filed in News
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On January 3, the 115th United States Congress was sworn-in in Washington, DC.  Although repealing “Obamacare” (also known as the Affordable Care Act) has dominated the news about this new Congress, it has a full plate of issues that it plans to address in the coming year.  Several of these issues will impact access to marrow and cord blood transplant:

  • C.W. Bill Young

    C.W. Bill Young

    Funding the CW Bill Young Cell Transplantation Program and the National Cord Blood Inventory through the end of Fiscal Year (FY) 2017 and for all of FY 2018. The CW Bill Young Cell Transplantation Program provides funding to support the Be The Match Registry®. And the National Cord Blood Inventory provides funding to support the collection and maintenance of cord blood units used for transplant.

    Each year, Congress must decide whether it will continue to fund these programs. This year Congress will finish the work it began in 2016 to appropriate funding through September 2017. It will also establish funding for October 2017 through September 2018. We need your help to advocate for continued funding of these programs that support our mission and help ensure patients have continued access to transplant.

  • Medicare payment reform. Both the U.S. House and Senate plan to address a variety of Medicare payment rulings in the coming year. These bills may include reforming hospital payments and could provide us with an opportunity to address the problem of Medicare rates not adequately covering the cost of acquiring bone marrow and cord blood for transplants.

We will seek comments this spring and fall from our advocate network to support efforts to improve Medicare reimbursement for transplant. Sign up to receive updates on these efforts.

  • Reauthorization of the State Children’s Health Insurance Program (CHIP) and potential Medicaid reform. The Congress also must review the CHIP program that provides health care coverage to millions of children across the country. This legislation may provide an opportunity to address ongoing concerns about State Medicaid programs as well.

We will continue to work with members of Congress to make sure that as policies evolve, Congress continues to protect access and remove barriers to life-saving transplants. And we’ll reach out to our advocates to support these efforts throughout the year.

Get involved with Be The Match® legislative advocacy

You can make a difference in the lives of patients with blood cancers. We invite you to sign up for our Be The Voice enewsletter to receive monthly updates on our advocacy efforts and how you can get involved to support our legislative advocacy efforts.

A family’s love shines bright: $1.25 million memorial gift supports clinical trials

Posted January 20th, 2017 by Be The Match and filed in News
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Jason Carter

Jason Carter

Jason Carter, of Wayzata, Minn., battled leukemia for 4½ years, and his family’s extensive search for clinical trials helped extend his life and their time together. Sadly, he passed away in May 2016. He was 28 years old.

“We hoped Jason would live long enough to find a cure,” said Jason’s parents, Robert and Diana Carter. “He tried every new treatment and new therapy possible. It was still not enough. Only 5 percent of cancer patients take part in clinical trials. That number must greatly increase for outcomes to improve more quickly.”

The Carter Family

The Carter Family

The challenges and frustrations the Carter family faced in their search for clinical trials inspired them to honor Jason’s life by donating $1.25 million to Be The Match Foundation to fund the Jason Carter Clinical Trials Program to help patients identify and enroll in clinical trials more efficiently.

“Jason wanted to make a difference” said Diana Carter. “We are thrilled to partner with Be The Match to improve this process and help other patients find the best treatment resources available. Together, we can help save lives.”

Bob and Diana Carter attending a "Thank You" celebration and program kick-off at Be The Match with CEO Jeffrey Chell, and Foundation team members

Bob and Diana Carter attending a “Thank You” celebration and program kick-off at Be The Match with CEO Jeffrey Chell, and Foundation team members

“This donation from the Carter family will have a profound impact on patients and families for years to come,” said Joy King, Senior Vice President of Philanthropy and Executive Director for Be The Match Foundation. “We could not be more honored and excited to carry out Jason’s legacy through this new program. We sincerely thank the Carter Family for their generosity and compassion for all patients.”

Learn more about the Jason Carter Clinical Trials Program.

In honor of the 2017 Martin Luther King, Jr. Day of Service, we honor super-volunteer Karen Milne, who dedicates her time and expertise to Be The Match®.

Posted January 13th, 2017 by Be The Match and filed in News
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Typically, when someone considers volunteering their time, they align with an organization or cause that has personally impacted their life. For Be The Match skills-based volunteer Karen Milne, the opposite scenario occurred – with no prior connection to the mission, she started volunteering her time and talents to Be The Match, and has impacted the organization and our employees in ways we couldn’t have imagined.

It all began when Karen retired from her career of 31 years as a legal assistant in a downtown law firm and knew that she wanted to spend her days volunteering in some capacity. Looking for opportunities to help, she thought of the NMDP/Be The Match as her firm had represented both for a few years. Mutual friends between her previous employer and Be The Match Foundation led to a phone call and quick realization that Karen would be a perfect volunteer for the annual Be The Match Gala. With experience in planning large events and campaigns, what started out as an intent to sporadically volunteer in her free time has led to an annual four-month commitment to organizing the Be The Match Gala Auction.

Working to help the present and future

Karen (second to the left), with the 2016 Be The Match Foundation service interns.

Karen (second to the left), with the 2016 Be The Match Foundation service interns.

Since 2013, Karen has given over 580 hours of her time to helping organize not only the Annual Gala’s auction, but also to mentor Be The Match Foundation service interns. Often referred to as “The Great Connector” among Foundation employees, Karen is able to lead the service intern team over the summer in assisting with the upcoming Gala, and connect their work with that of the core Foundation team. Her leadership has allowed the service interns to thrive, and gain valuable experience each summer in their work with the Foundation.

“By example, my parents taught me to always give back. This is a meaningful way to fulfill giving back. There is an anonymous quote that says, ‘A person’s most valuable asset is not a head full of knowledge; but a heart full of love, an ear ready to listen and a hand willing to help others.’ I want to always be that person and Be The Match helps me do that,” Karen says.

The Exception to the Rule

A typical volunteer for Be The Match gives approximately 17 hours per year, ranging in positions from in-person registration volunteers, event-day volunteers, and volunteers like Karen – who help with event preparation. Each year, Be The Match Foundation looks for volunteers they refer to as “Go Getters” to work on the annual gala. Being a “Go Getter” is more of a state of mind than anything. They are motivated individuals who go out of their way to make an impact on the service they’re offering.

While Karen technically volunteers as a “Go Getter”, her contribution of time and expertise goes far beyond the expectations of the role – she is the epitome of “the exception to the rule”. While she knows that she is in no way obligated to help out as much as she does, Karen still spends hours each year dedicated to the Be The Match mission – which includes spreading awareness. Her contributions are irreplaceable, and appreciated more than she knows.

Want to get involved too?

If you’re looking for ways to support Be The Match, volunteering for an event like the annual Be The Match Gala may be perfect for you! If you’re in the Twin Cities area, check out our Gala Volunteers page. You can also visit BeTheMatchVolunteer.org for information on other opportunities.

TODAY Show celebrates donors for “sharing kindness”

Posted January 9th, 2017 by Be The Match and filed in News
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Anna, marrow transplant recipient, with her mom.

Anna, marrow transplant recipient, with her mom

NBC’s TODAY Show recently featured two courageous transplant patients: the young woman, Markel, who met her life-saving marrow donor, Shauna for the first time in New York, and 7-year-old Anna, who received her transplant last fall.

When they first learned that they needed marrow transplants, both Markel and Anna had family members tested to see if they could donate, but neither Markel’s twin brother nor Anna’s 4-year-old sister was a match. They would each need to find a stranger who would be a genetic match—and be willing and available to donate.

They turned to Be The Match for help, and from a registry of 13.5 million potential donors, Anna had just two ideal matches—but hopes were dashed when both of them turned out to be unavailable to donate.

Anna’s only hope was to choose the next best match, despite an increased risk of complications. Fortunately, an appropriately matched European donor was found and Anna received her life-saving transplant. Today she is doing well.

Markel and her donor, Shauna were able to meet and celebrate in person amidst hugs and tears of joy. “I can’t thank her enough for sharing her

Transplant patient Markel meeting her marrow donor Shauna

Transplant patient, Markel meeting her marrow donor, Shauna

kindness towards me and I urge everyone else to share their kindness, even the littlest amount that you have,” said Markel.

“It was honestly a very painless and easy process,” said Markel’s donor, Shauna. “It was just such an incredible thing to think, ‘wow, there’s someone out there who has my blood and cells in her, and that helped her beat this terrible disease.’”

Anna’s family also hopes to meet their donor, but they must remain anonymous to each other for at least a year. “I think about our donor a lot,” said Melissa, Anna’s mom. “So I hope to meet him one day, and tell him from the bottom of my heart how grateful I am to him for saving our daughter’s life.”

“It started with swabbing a cheek, and ended up being a long life for a beautiful little girl,” said Tim, Anna’s dad. “This year we’ve received random acts of kindness, deliberate acts of kindness, and anonymous acts of kindness. I think a good thing for our family, this year and beyond, is to share kindness.”

You too can share kindness and make a difference in patients’ lives.

See the full Today Show segment

Villanova Donors Honored at Under Armour All-America Football Game

Posted December 28th, 2016 by Be The Match and filed in News
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Sunday marks the tenth-annual Under Armour All-America Football Game that features more than 90 of the nation’s best high school football players. Three former Villanova football players – all of whom have donated bone marrow to a patient in need – are traveling to Orlando for the game and will attend player practices, skills drills and will have a chance to talk to the players. They will also be recognized during halftime to honor their life-saving donation.

C.J., Jacob, and Jake all joined Be The Match Registry® and within three months last year, they all donated to a patient in need.

It’s no coincidence that all three of these young men come from Villanova. The Wildcats’ head football coach, Andy Talley, is an avid supporter of Be The Match and co-created the organization’s “Get in the Game. Save a Life.” (GITG) initiative which encourages on-campus donor recruitment, largely supported by college athletes. 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. Talley is retiring after this season, but his commitment to getting more committed young donors on the registry remains strong.

“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.”

C.J., Jacob and Jake are excited to speak about their experience with the soon-to-be college athletes.

“When I joined I felt that I would be a match for someone,” says CJ. “I knew that there was a need to increase diversity of the registry and they were looking for Black or African American donors.” Overall, CJ is the sixth person who played for Talley to be a donor. And he’s the first African-American.

“The first time it really hit me about what was happening was when I asked a nurse what would have happened if I had decided not to donate,” says Jacob. “She told me that the patient wouldn’t have had a chance to survive and would have died.” Jacob was humbled. “The patient was literally going to receive a piece of me so that he could have a chance to live,” he says.

Jake says that the experience was life-changing. “It wasn’t hard and it is not painful!,” he says. “I encourage everyone to join the registry.”

The Under Armour All-America Football Game is the first of a series of sports-focused sponsorships Be The Match has planned in 2017, all in the hopes of getting committed young men to join the registry.

For more information about marrow donation, and the need for young men to join the registry, visit BeTheGuy.org.

“My hero, my warrior, my sister.” One patient saved by two donors who stepped up to make a difference

Posted December 7th, 2016 by Be The Match and filed in News
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Briana (middle) with her family and marrow donors, Jose and Fernando (to the right and left of her).

Briana (middle) with her family and marrow donors, Jose and Fernando (to the right and left of her).

Briana had been crowned Homecoming Queen and was in the top five percent of her graduating class. She’d just been accepted to the University of Texas at Austin. But in March 2014, her dreams for the future were shattered when she was diagnosed with severe aplastic anemia. Her only hope for a cure was to find a matching marrow donor—a stranger who would come forward to save her life.

“Instead of preparing for college, I had to watch all of my friends begin without me,” she said. “It was a struggle to accept things weren’t going the way I planned.”

Briana’s doctors searched the Be The Match Registry for a donor, and in December, Briana and her family rejoiced when a matched donor was found. She received her transplant, and her faith in the future was restored. The family’s focus shifted to supporting Briana on her long road to recovery.

But their hopes were dashed again, when the donated cells did not engraft. The transplant had bought her time, but it had not been a success.

Briana had to find the strength inside herself to keep fighting. “My mind was just focused on getting through each day, not all the days to come,” she said. “I had come too far to just give up.”

Fortunately, another donor was found. And in March 2015, after going through another round of chemotherapy and radiation, Briana received her second transplant. Despite complications—including infections that required multiple surgeries—the second transplant was a success.

Today, Briana is a healthy 20-year-old with a unique perspective on life. “I went through something most people my age never have to experience, or even think about. I know now what kind of a woman I want to be. I’m going to change the world. There is nothing I cannot do.”

Briana’s transplant journey came full circle in November 2016 when she got to meet both of her donors, Jose and Fernando.

Her first donor, Jose, had been disappointed that his donation had not been a cure—but he was grateful to be part of the process that got Briana to her second transplant.

“The most memorable part of donating was the feeling that I was part of a life-saving experience,” Jose said. “I finally had a purpose in life to save someone else in this world.”

Briana’s second donor, Fernando, was equally moved by the experience. “The real heroes are the patients who overcome their illness, which affects them, that causes them anguish and pain. That is why Briana is my hero, my warrior and my sister.”

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, head football coach of the Villanova Wildcats. Talley will retire from coaching following the 2016 season, but his commitment to saving the lives of those suffering from blood cancer will continue long after he walks 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.”

For more information about marrow donation, and the need for young men to join the registry, visit BeTheGuy.org.

Your holiday gift guide

Posted November 14th, 2016 by Be The Match and filed in News
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Looking for a way to give back while you shop for gifts this holiday season? Be The Match has a few ways to help you do just that.

Shop Be The Match. Browse our online shop for the latest Be The Match branded gear.

One-of-a-kind Be The Match ornament available through our online shop

One-of-a-kind Be The Match ornament available through our online shop

From hats to bags to drinkware, a portion of the proceeds from any item you purchase helps patients in need by adding more marrow donors to the Be The Match Registry, helping patients with uninsured costs and supporting life-saving transplant research. In November, you’ll receive a one-of-a-kind Be The Match ornament when you spend $40 or more in the shop. Sign up to stay connected to the latest products and special promotions.

 

Volume 8 of our holiday CD helps raise funds for patients in need

Volume 8 of our holiday CD helps raise funds for patients in need

Holiday CD Sampler. Get in the holiday spirit with our 8th volume of “A Minnesota Holiday” CD. All of your favorite traditional holiday songs are featured by artists from the Midwest, with a bonus track from Javier Colon, season 1 winner of hit TV show The Voice. A portion of all proceeds will benefit Be The Match and our mission to help save lives through cellular therapy. Available now for digital download on iTunes and in MP3 format. All Minnesota Kowalski’s Markets have the CD available for purchase starting November 25th.

Give back while you shop with AmazonSmile

Give back by shopping with AmazonSmile

AmazonSmile. Support Be The Match by shopping with AmazonSmile. Simply click on the link below to buy the items you already have on your list, and for each eligible purchase, Amazon will make a donation to the Be The Match Foundation. Start using Amazon Smile today and show your support for patients in need.