Volunteer Spotlight: Marcia Diefendorff

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

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

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

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

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

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

Meet Steven: marrow donor and Walk+Run volunteer

Posted October 24th, 2017 by Be The Match and filed in News
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Steven, Be The Match Volunteer and Marrow Donor

Steven loves 80’s music, playing softball and watching movies with his girlfriend, Minga. He has an American Bulldog named Axel Foley, and he’s worked in banking for 18 years and Parks & Rec. for 10. He lives in Charlotte, N.C. Steven shares how he became a marrow donor and why he volunteers with the Be The Match Walk+Run events.

 

Why did you join the Be The Match Registry?

I joined while I was donating blood to the Red Cross. Back then it took a vial of blood to join. I was already hooked up, so I said, “Sure, why not?” It sounded exciting.

 

What was it like to donate marrow?

It was years later when I got the call that I was a possible match for a patient. They asked me if I wanted to proceed with the donation process. I would not have been able to live with myself if I hadn’t decided to help. The donation process was a breeze. Everyone on the Be The Match staff was very helpful and very appreciative.

 

What did you know about your recipient?

All I knew was the recipient was male, we were the same age, and he lived overseas. Someone from Be The Match was with me during my donation so that my marrow could go immediately to the airport.

 

Why do you volunteer for Walk+Run?

I’m not a rich person, so I don’t have a lot of money to give. But what I do have is a little extra time to give. It doesn’t take much of your time to volunteer and help someone. Since the Be The Match staff was so nice during my donation, I decided to become a volunteer ambassador. And I get to work with great people, like Be The Match community engagement rep., Addie Sanders. With her help I have gotten to meet many new people and hopefully helped make a difference in their lives.

 

What do you say to encourage others to get involved?

I tell them that joining the registry is an easy way to be a hero.

 

Learn more about how you can get involved.

Meet Jacqueline: transplant nurse and volunteer marrow courier

Posted October 23rd, 2017 by Be The Match and filed in News
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Jacqueline with her family

Transplant nurse and Be The Match courier, Jacqueline with her family

Jacqueline was born in Lima, Peru, and moved to New Jersey in 1977. Today, she’s a marrow transplant nurse and volunteer courier who lives in Texas with her husband and children. Jacqueline loves to travel, eat and show her kids that the world is a great place, and they must try to accept and embrace what is offered to them. Jacqueline shares what it’s like to be a transplant nurse and volunteer marrow courier.


What’s 
it like to be a bone marrow transplant nurse?

I love being a nurse.  I always tell new nurses to treat their patients as if they were one of their family members. This way they will never lose that passion.  I started working at MD Anderson Cancer Center in 1986 as a phlebotomist. Then I went to nursing school and worked as a bone marrow transplant nurse from 1998 to 2011.  I also worked as a bone marrow transplant research nurse for 3 years, but realized I need to talk to patients and not to a computer. I like patient contact and I returned to patient care.  Stem cell is where I started my nursing career and it’s my baby.

 

Your cousin is a transplant doctor in Peru?

I had not seen my family back in Peru in many years, but I found out my cousin is a very well respected hematologist and the very first doctor to do a bone marrow transplant in Lima!  His name is Dr. Sergio Murillo Vizcarra.  Now, I go home to Peru every chance I get.  We talk about what else?  Stem cells!

He informed me that they just started the national registry last year.  So to me this is very exciting. Lots of Hispanics and other cultures are not very aware of what stem cell transplant is. They think the donors will be operated on and their cells will be taken and they, too, will get cancer or sick … We have a lot of teaching to do still after all these years.

 

What’s it like to be a volunteer marrow courier, helping to deliver donated marrow to a patient?

It’s the best feeling when you are transporting cells that someone donated to save someone else’s life. I always say a prayer so that the person who gets the donated stem cells does well.  (I know it sounds cheesy, but I do.) When we had our twins I told my husband, Martin, he had to do something nice to thank God for our babies.  Now Martin is also a volunteer marrow courier. It’s a wonderful feeling to get to do something good for someone else, and to know that just maybe it helped that person have a second chance.

 

What do you say to encourage others to get involved?

I always try to educate people of what a stem cell transplant is, and if they are ever chosen what the collection process entails. The other day I heard my kids tell their little friend “my mommy is going to deliver cells so she can save someone’s life.”  This makes me hope that they too will get involved in some way like their mom and dad.

Learn about how you can get involved. 

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