World Marrow Donor Day is September 16!

Posted September 8th, 2017 by Be The Match and filed in Donor Stories, News
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Did you know that nearly 50% of all marrow transplants use international donations?

Be The Match is one of 100 organizations from 57 countries that celebrate World Marrow Donor Day. The day is dedicated to thanking marrow donors, as well as registry members, who are ready to donate to any patient if called. It is also a day to help raise awareness about marrow donation – both the need for volunteer donors and the impact it has on patients.

On behalf of all patients, we want to thank each donor for their selfless decision to donate to those in need of a life-saving marrow transplant.

We also want to thank all registry members for their continued commitment to help any patient. There are more than 30 million people across the globe who have registered to donate marrow to any patient if they are a match.

Many people are still unaware of the need for volunteer marrow donors and the process of marrow donation. You can help spread the word of the life-saving impact donation can have.

Help us celebrate World Marrow Donor Day!

  • Thank donors and registry members on social media by saving and sharing the Thank You graphic. Tag Be The Match in your post and use hashtags #ThankYouDonor, #WMDD and #BeTheMatch.
  • Use our World Marrow Donor Day Facebook profile frame on September 16:
    • Hover over your Facebook profile image and click “Update Profile Picture” then click “Add Frame”
    • Search for “World Marrow Donor Day” and select one of the Be The Match World Marrow Donor Day frames
    • Position the frame over your profile image and click “Use as Profile Picture”
  • Tune in as Nicolette Peloquin, peripheral blood stem cell (PBSC) donor and Miss Rhode Island 2017, goes live for a donor Q&A on the Be The Match Facebook page Sept. 16 at 3pm CT. She will talk about her donation experience and answer viewer questions.
  • Encourage friends and family to join the registry by sharing Join.BeTheMatch.org/WMDD2017

Sickle Cell is Global

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FAQs Debunking the myths for Sickle Cell Awareness Month

Sickle Cell Disease Illustration

Sickle cell disease (SCD) is an inherited red blood cell disorder which affects approximately 100,000 people in the U.S. It causes organ damage, pain, low quality of life and even premature death. A blood and marrow transplantation is currently the only known cure.

Unfortunately, many people have misconceptions about transplant due to the lack of awareness and misinformation that is out there on the web. September is Sickle Cell Awareness month which makes it a perfect time to debunk many common myths about blood and marrow transplants for SCD. Addressing these myths and answering questions can help those struggling with SCD make informed decisions about their treatment options.

Debunking the myths; your questions, answered.

 
Can a blood or marrow transplant (BMT) cure sickle cell disease?

A blood or marrow transplant (BMT) can cure SCD. The unhealthy cells are replaced with healthy blood-forming cells from a donor. It doesn’t even involve surgery, but rather a process similar to a blood transfusion. To learn more about the entire process, click here.

My doctor didn’t tell me about transplant. Does that mean it isn’t an option for me?

If your doctor hasn’t mentioned transplant it doesn’t mean that it isn’t an option for you! Ask your doctor about it and they will send you to a transplant doctor who will tell you if transplant is an option for you.

What are the risks and benefits of transplant?

The risks and benefits of transplant can vary from person to person because people respond differently to transplant. A transplant doctor can tell you more.

Could someone with the trait still be my donor?

Many people think that if you have the SCD trait, you cannot be a donor. The truth is, having the trait doesn’t keep someone from being a donor. It is most important that you and your donor have closely matched human leukocyte antigens (HLA), which proteins are found on most cells in your body and are passed down from your parents.

How much does transplant cost?

Transplant can be expensive. If you talk to a case manager at your health insurance company, they can tell you the rules and what your plan covers.  Be The Match has grant programs to help some patients with costs before and after transplant. Call the Be The Match Patient Support Center at 1 (888) 999-6743 to learn more.

How will my life change after transplant?

Your life may change in many ways after transplant. You may not have SCD anymore, but recovering from a transplant takes time. A transplant doctor can talk to you about how your life may change after transplant. You can call us to talk with someone who’s been through transplant before at 1 (888) 999-6743

How many people have had transplant for SCD in the U.S?

Although it is estimated that thousands of people living with SCD could benefit from transplant, less than 1% of people eligible have had transplant. This table below gives you more detailed information.

Did you know…?

  • Only 18% of patients with SCD have a healthy, fully matched sibling donor. People can turn to the Be The Match Registry® for help finding an unrelated donor or umbilical cord blood unit.
  • Only 9% of patients with SCD can find a match through the registry due to the low number of African Americans on the registry and donor unavailability.
  • The chances of an African American patient finding a match on the registry is between 66-76%, the lowest compared to all other populations on the registry.
  • Patients are most likely to match someone of the same ethnic background, and doctors request donors in the 18-44 age group more than 9 out of 10 times.

“The pain for me was only temporary. Think about the patient”

Posted August 17th, 2017 by Be The Match and filed in News
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Marrow Donor Aja-Rei

Marrow Donor, Aja-Reigh, with her Dad, Arthur

Aja-Reigh loves tacos, action movies, singing along with Beyoncé–and helping people. “My mom would always tell me that it is important for people to care for each other.” That’s what motivated her to join the registry in 2013. A year later, she got the call she was a match for a 13-year-old boy with sickle cell disease. She was filled with joy and eager to move forward. Her family was excited for her, but were worried it was going to hurt. “I reminded them to think about the patient. The pain for me was only temporary,” said Aja-Reigh.

It was lucky for Justin, her transplant recipient, that Aja-Reigh felt that way. His ethnic background (Guatemalan and Jamaican) made his chances of finding a match very slim, and for many patients like him, the wait to find a match can be long and uncertain.

She and Justin met for the first time in May 2017 at Be The Match’s New York Soiree, inspiring tears of joy from the crowd. The funds raised at the event help increase the ethnic diversity of the registry, ensuring that more patients like Justin can find a donor when they need it.

Looking back, Aja-Reigh has this advice for other donors: “Don’t let other people discourage you. Think about the recipient. If you have something that could potentially save a life, why not donate it?”

Saving those who live to save us

Posted August 17th, 2017 by Be The Match and filed in News
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Help patients like Matt

LAPD Officer and searching patient, Matthew

Going to the doctor for something minor, only to learn you have a rare and potentially life-threatening disease is a gut-wrenching shock for anyone.

For first responders, men and women who save lives each day, it’s a world turned upside down. Now, their lives are on the line.

Matthew, a police officer, husband and father of two, knows this feeling all too well. He recently learned that he has aplastic anemia, a rare disease in which his bone marrow does not make enough blood cells for his body. Fewer than 1,000 Americans receive a diagnosis of aplastic anemia each year, and like many of them, Matthew does not know its cause.

What Matthew does know is that a cure is possible. By finding a match on the national registry, he can get the bone marrow transplant he urgently needs to survive. Unfortunately, he is still searching for the perfect match.

Matthew is not the only one in need. Too many police officers, firefighters, EMTs and other first responders across the nation are waiting for the person who can save their lives.

The Register & Respond campaign encourages first responders and their families, friends and communities to join the Be The Match Registry® as potential marrow donors.

The more potential marrow donors on the registry, the more patients Be The Match can help. A marrow transplant can be a cure for blood cancers and other life-threatening diseases, including leukemia, lymphoma and sickle cell anemia. But most patients in need of a transplant will not have a fully matched donor in their families.

Matthew is one of those patients. His family and friends continue to hope that he will find a match, likely in the Filipino community. Dozens have joined the registry since learning of his diagnosis, including Dante, his childhood friend and partner at the police department. “All you want is for your loved one to have a chance,” said Dante.

Do you know a first responder who can support this initiative, either by joining the registry or encouraging their department to join this movement? If so, please visit and share BeTheMatch.org/Register2Respond.

Lynn’s generous gift will help more patients in need

Posted August 4th, 2017 by Be The Match and filed in News
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Lynn Abrahamsen

After a long and successful career in health care, the choice to share her expertise and “give back” comes naturally for Lynn Abrahamsen.

“I have always believed in giving back to the community. That has been something that’s just part of who I am, forever.”

After more than forty years in the health care industry, most recently as the chief executive officer of Hennepin Healthcare System, Inc., Lynn was planning for retirement, knowing that service to her community would make up a big part of her time. She had begun her career fresh out of college as a volunteer director, helping people give their time in the health care field. Toward the end of her career, her duties as a hospital CEO left little time for community service, and so she knew she wanted to re-invigorate that skill set upon retiring. Beyond grandchildren, hiking and spending time at the lake, she wanted to find an organization that she could spend time with, and make a meaningful contribution to.

Choosing Be The Match
Due in large part to her experience in the health care field, Lynn has been drawn to organizations that combine a scientific aspect along with a service to patients. To see, first hand, the research and hard work of the scientific community be actualized for patients is both intellectually stimulating and rewarding for Lynn. This interest, and her prior knowledge of the organization from the health care world, led Lynn to Be The Match.

Although she doesn’t have a close relative or friend who has needed the services of Be The Match, her interest in the science and patient support drew her to our mission. She also finds herself constantly humbled by the number of people who volunteer to be a part of the Be The Match Registry® – joining to see if they could save the life of a stranger.

Reflecting on her decision to make a major gift
As a member of multiple boards, Lynn has experience when it comes to being a board member and supporting an organization with various resources. She believes that when someone accepts a board spot, they need to be prepared to offer their expertise, their judgement, and their resources – which can come in a lot of different ways. To her, it’s clear that Be The Match needs financial contributions to fulfill the mission, and not every patient can afford the high costs of transplant. And so, after being nominated as chair of the NMDP/Be The Match Board of Directors in 2016, Lynn decided to make a generous gift of $25,000 to Be The Match.

“The organization is clearly values-driven, and I’m happy to see my money go to support this mission.”

Lynn’s gift will be benefiting the Drs. Jeffery and Isabell Chell Patient Assistance Fund. We are so very grateful for Lynn’s generous contribution, both of her time and her financial resources, and we are thrilled to be able to further our mission, save more lives and help even more patients and families as they navigate the world of transplant as a result of her gift.

“The more time you spend with the organization, the more you realize that your financial contribution is highly valued, and necessary for the mission.”

Interested in joining Lynn in supporting Be The Match?
Join the registry – you could be the match that someone is searching for.
Give – big or small, financial gifts help continue our mission to help patients and their families.

For more information on major gift opportunities contact Keith Stout, Director of Major and Planned Gifts, at 763-406-8150 or sstout@NMDP.ORG

A Father’s Urgent Plea

Posted June 14th, 2017 by Be The Match and filed in News
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Kapil, searching patient

Kapil will be spend this Father’s Day with his three children. Nothing out of the ordinary has been planned, but for Kapil, it will be very special.

Earlier this year, Kapil was diagnosed with myelofibrosis, a disease that causes debilitating symptoms such as fatigue, abdominal discomfort, that affect the quality of his daily life. Doctors has given him 2 to 3 years to live. His only hope for a cure is a marrow transplant. Like 70% of patients, Kapil does not have a fully matched donor in his family and has turned to Be The Match® to find an unrelated donor.

“The best part about being a dad is seeing my kids happy. Seeing them blooming on their own, crossing milestones like going from speaking five works to a sentence,” said Kapil. Like all parents, he wants his kids to study hard and be good, contributing members of society. “I hope I am able to be there for that, but the reality is, there’s a chance I am may not be,” he said.

Kapil says he is truly touched by the outpouring support he’s received from the community. Friends, family and strangers have hosted marrow drives and/or joined the registry.

“I want to send a message to all those who are out there. That you have a chance to save somebody’s life. It may be mine, it may be a 3-year-old, a 9-year-old, a 21-year-old, it doesn’t matter. The point is, just be ready that if you are a match to please come forward and take the steps involved to donate stem cells. Cause for you it might be a blood draw, but for me (and others) its life-saving,” Kapil pleads.

This Father’s Day, be the hope Kapil and patients like him are looking for. Join the marrow registry at join.bethematch.org/HOPE4KAPIL.

June 19 is World Sickle Cell Awareness Day

Posted June 13th, 2017 by Be The Match and filed in News
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Constance, marrow transplant recipient

Did you know: in the United States, sickle cell disease (SCD) affects about 70,000-100,000 people. It is most common among African Americans and Hispanics, but is also found in other ethnic groups. The only known cure for SCD is a blood or marrow transplant, which replaces the patient’s diseased blood-forming cells with healthy ones from a matched donor.

SCD is an inherited disease, named for the crescent- or sickle-shaped red blood cells it causes. These defective cells can get stuck in small blood vessels, blocking them. This keeps red blood cells and the oxygen they carry from getting to all parts of the body. Complications of SCD can range from mild tiredness (fatigue) to more severe symptoms such as strokes, heart attacks, infections, organ damage and repeated episodes of severe pain.

A blood or marrow transplant is the only known cure for SCD. And because SCD disproportionately affects African American and Hispanic patients, there is urgent need to add more individuals of African American and Hispanic heritage to Be The Match Registry.

A legislative team from Be The Match will be in Washington D.C., for World Sickle Cell Awareness Day, advocating for increased awareness of SCD and the struggles patients and their families face, as well as secure additional funding to help more patients live longer, healthier lives.

Meet Kami, a courageous young girl living with sickle cell. Help her find a donor by watching and sharing her story

Leaders meet with congress members in support of improved Medicare reimbursement

Posted June 5th, 2017 by Be The Match and filed in News
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Capitol Building

On Tuesday, June 6th, leaders in the field of bone marrow transplantation (BMT), as well as NMDP/Be The Match, will travel to Capitol Hill to inform Members of Congress that inadequate Medicare reimbursement for transplant greatly impacts their transplant centers and patients. These leaders will urge Members of Congress to support upcoming legislation to align transplant reimbursement for bone marrow, peripheral blood stem cells and cord blood similarly to that of solid organ transplant.

Why are these meetings important?

Leaders will be meeting with Members of Congress in attempts to improve Medicare reimbursement for transplant. Currently, the Centers for Medicare & Medicaid Services (CMS) reimbursement for stem cell and cord blood transplant does not adequately cover the total costs of the procedure. As a result, hospitals lose thousands of dollars on every Medicare patient they treat. This is jeopardizing patient access to life-saving treatment.

Congressional supporters are working on a bill that would change the way donor search and cell acquisition are reimbursed through Medicare, thereby improving the overall cost of transplant. This change is reflective of the way the costs for solid organ transplant are currently reimbursed.

This important bill will likely be introduced in early June. Although it will have a very minimal impact on Medicare’s total spending, it will have an enormous impact to ensure that patients, ages 65 years and older, who need transplants will be able to receive them without facing financial barriers.

“We are hopeful that with advocate support, the Congress will pass this legislation which will successfully increase reimbursement for transplants, making this life-saving treatment accessible to all patients,” states Susan Leppke, Director of Public and Payer Policy at NMDP/Be The Match.

Learn more about the advocates

Dr. Eneida Nemecek, MD MS, MBA: Director of the Pediatric Bone Marrow Transplantation Program at Doernbecher Children’s Hospital and co-director of the Northwest Marrow Transplant Program at Oregon Health and Sciences University. Dr. Nemecek has spent years researching the latest advances in bone marrow transplantation and has seen first-hand how the procedure saves lives.

Dr. Daniel Couriel, MD, MS: Director of the Bone Marrow Transplant Program, University of Utah School of Medicine. Dr. Couriel has considerable work in researching new treatments and biomarkers for acute and chronic graft-versus-host disease. He has a history of consistent funding and has more than 100 peer reviewed journal articles.

Rocky Billups, MS: Vice President of Operations, Sarah Cannon. Mr. Billups has more than 20 years of experience in clinical practice and developing oncology programs. He is a professional member of the American Society of Clinical Oncology® (ASCO), American Society of Hematology® (ASH), American Society of Blood and Marrow Transplantation™ (ASBMT) and the Association of Community Cancer Centers (ACCC).

Jennifer Christian: Bone Marrow Transplant Director at the University of Kentucky. Ms. Christian has spent her career managing and operating bone marrow transplant programs, giving her a front row seat to the wonders of transplant. Her focus is primarily on quality, business, administrative, and operational matters of the BMT Program yet she has developed a unique and in-depth understanding of the clinical aspects of patient care.

How you can get involved

It will be very important for advocates to voice their support of this bill by contacting Members of Congress. Look for advocacy opportunities later in June to encourage your Members of Congress to support this legislation.

Looking for ways to support our legislative advocacy efforts? Sign-up for our Be The Voice e-newsletter and follow us on Twitter @BeTheMatch or Facebook to receive updates and learn how you can get involved.

If you are a match, it’s a miracle! Don’t question it, do it!

Posted May 12th, 2017 by Be The Match and filed in News
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Transplant recipient, Estevan

Carlos is a husband, father and golfer who loves to travel and spend time outdoors with his family. He’s also a frequent blood donor. It seemed like a natural choice to join the marrow donor registry. “My wife and I always knew we wanted to be donors.”

Having joined back in 2009, Carlos was shocked when he got the call that he was a potential match for a young boy with severe aplastic anemia. “It’s one of those things you don’t really think about after you register, until you get the call.”

Carlos describes the day of surgery as a little overwhelming, “seeing so many doctors, nurses, anesthesiologists and other medical professionals in my room to take me to surgery. All along the way, every single person told me how amazing I was. I was told I was a hero but, to me I was just doing the right thing, what I would hope someone would do for me or my family if necessary.”

“We were praying for the best possible outcome for this kid. It’s funny how we didn’t know him yet we prayed for him daily and asked our family and friends to keep him in prayer. We didn’t have a name to lift up but God knew who it was.”

Donation process

Carlos jokes that his main concern about the donation process was how long he’d have to be off the golf course. “It wasn’t hard. I was nauseous on the way home but, after that I was fine. My wife and I took our dogs for a walk the next day so the donation area would not stiffen and be too sore. I took the full seven days of recovery suggested and walked every day.”

And every day, they thought about the patient. “I just wanted to know how he was doing – hopefully I was giving this kid a chance at a normal life.”

Carlos’s prayers were answered. He learned that his recipient’s name was Estevan, a 13-year-old boy from Albuquerque, who loves playing basketball and video games. And Carlos learned what transplant was like form Estevan’s perspective.

 Estevan’s experience

“I’d never had chemo and it made me really sick. The day of the transplant, I was nervous. I was drowsy because of the pre-meds, but my mom, grandma, family friend and aunt were there with me.”

After the transplant, Estevan experienced fevers and infections, but he’s made a steady recovery. “I am in school and having fun with friends and cousins,” Carlos said. “It is good to be back around others.”

Estevan has this to say to Carlos, “Thank you very much for saving my life!” And Carlos has this advice to other registry members:Do it! Don’t think about it and over analyze it—just do it. If you are a match that in itself is a miracle, don’t question it, do it.”

Support for coping with nerve damage after transplant

Posted May 9th, 2017 by Be The Match and filed in News, Patient Stories
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May 7 – 13 is peripheral neuropathy awareness week. It’s not a common problem after transplant, but if you have it, you know it can affect your entire life – and not just physically.

Know the symptoms of peripheral neuropathy

Peripheral neuropathy is numbness and tingling in your fingers and toes. It can also cause pain, weakness, difficulty with writing, and problems with walking and balance. Even a light touch on the skin can be painful.

Everett, transplant recipient, with his doctor

Sometimes it can make your hands or feet more or less sensitive to temperature changes and pain. This may make it painful to step into the bath or shower. Or you may also be less aware of cuts or injuries to your feet. Find tips to stay safe and protect your hands and feet.

If you have any of these symptoms, talk to your transplant team. There are medicines to treat neuropathy and ease your symptoms.

Speak up!

“Advocate for yourself, and don’t minimize or play down your experience of pain or discomfort,” says Olivia Eusden, BMT Social Worker at Be The Match®. Olivia provides one-on-one counseling support over the phone to help patients and caregivers cope with transplant and recovery. She says “It’s important to listen to your body and track its changes.” If you struggle finding the right words to tell your doctor how you’re feeling, Olivia says, “Social workers at your clinic, or trusted family members and friends, can help you advocate for yourself.”

Get support

It’s also important to care for the emotional effects of peripheral neuropathy, says Olivia. She points out that when a chronic problem like peripheral neuropathy develops after transplant, it may be difficult for your loved ones to understand. “When people can’t understand something, they may be fearful and avoid talking about it. As a result, you may feel isolated and under-supported,” she says. If that happens, it’s important to take steps to break out of the isolation.

One way to get social support, says Olivia, is to help people help you. “Tell others how they can support you. Many people need direction when it comes to how to offer support. And, the support you need now may be different from support that others have given to you before or shortly after transplant.”

Olivia also suggests that you be gentle with yourself. “It takes time to adapt to peripheral neuropathy and figure out how to fit it into your life,” she says. “Take comfort in knowing that as with most new challenges in life, they start to make sense over time.” You can make sense of your life after transplant, including peripheral neuropathy, by reflecting on your transplant story. Olivia suggests, “Think about your experience with peripheral neuropathy and incorporate it into your new story. How we retell our stories shapes our personality, our future experiences, and old and new relationships.” Your story can empower you to move forward in your life after transplant.

Finally, Olivia suggests to “Practice self-care and spend time with positive people.” She notes that support from mental health professionals may also help you cope. “You can recover the support you need by seeing a licensed mental health professional,” she says. To receive free counseling support to help you cope with peripheral neuropathy or other challenges after transplant, call 1 (888) 999-6743 or email patientinfo@nmdp.org.

Connect with a peer

“Peer support is some of the best support for people coping with uncommon problems after transplant, like peripheral neuropathy,” says Olivia. Peer support can be in the form of a support group or one-on-one connections.

Support groups are safe spaces to share your fears and frustrations without feeling judged or misunderstood. People in a support group may understand life with peripheral neuropathy in ways that other people might not. There are groups that meet in person, online or by phone. Ask the social worker at your clinic for help finding a support group for you.

One-on-one support is another option. Our Peer Connect program can connect you with a trained volunteer who’s been there. Other recipients and caregivers, with experiences like yours, are available to talk by phone or email, sharing their experience and tips.

To request a connection, visit: BeTheMatch.org/patient-peerconnect