Governor Dayton proclaims Sept. 21 Jason Carter Clinical Trials Program Day

Posted September 24th, 2018 by Be The Match and filed in News, Patient Stories
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To celebrate the legacy of Jason Carter, and his drive to make a difference, Governor Mark Dayton has proclaimed Sept. 21, 2018 as Jason Carter Clinical Trials Program Day.

After living with leukemia for more than four years, and participating in two clinical trials, Jason Carter passed away in May 2016 at the age of 28. Jason loved fishing, skiing the mountains of Montana, perfecting recipes and taking photos of his outdoor adventures.

To continue Jason’s legacy by helping to get more people to participate in clinical trials, the Carter family created the Jason Carter Clinical Trials Program with a generous donation to the Be The Match Foundation®, the fundraising organization that supports Be The Match®.

The program has many free and confidential services for patients and their families, including: One-on-one nurse support with assistance in finding clinical trials; an easy-to-use online clinical trial search tool; and easy-to-understand clinical trial descriptions.

Please join us in celebrating Jason Carter’s life-saving legacy.

My Bone Marrow Donation Journey

Posted September 17th, 2018 by Be The Match and filed in News
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Throughout my entire life, I’ve been able to enjoy the simple things in life. I love traveling, going to family cook outs, spending my days at the beach and singing along to Beyoncé. I always appreciated my family and the values they instilled in me from a young age. One of those values was a commitment to help other people. In 2013, while I was working for a news station, I was fortunate enough to do a story on Be The Match® and it inspired me to join the Be The Math Registry®.  I thought, ‘how much more could I show that I cared for someone, than by donating a part of me in the hopes it would help them live a longer, healthier life?’

Aja-Reigh with her recipient, Justin

A year later, I was called to be a donor for a kid with sickle cell disease. I didn’t know it at the time, but the recipient was 13 year old Justin Nunez. He was 6 months old when he experienced his first sickle cell pain crisis. He had to get used to the fatigue, headaches, dizziness and severe pain of sickle cell disease while trying to be a normal kid. As he grew older, the disease worsened and his only hope for a cure was a blood stem cell transplant (bone marrow transplant). With no matches in his family, the Nunez family turned to Be The Match to begin the search for an unrelated donor, and they found me.

With his ancestry being Guatemalan and Jamaican, Justin had to beat the odds in order to find a match. With only 19% (19 out of 100 people) on the registry identifying as racially and ethnically diverse, I’m so grateful I was able to be his match to cure his disease

Imagine my excitement when I was first called to be Justin’s donor! I immediately called my family, overjoyed at the life-saving opportunity that was presented to me. They shared in my excitement, but worried that my donation was going to hurt. I was committed to donating to this kid in need, and reminded myself that any pain I felt would only be temporary compared to what he was feeling living with sickle cell disease.

In the weeks leading to my donation, I attended appointments and information sessions to learn all about the donation process and why it is so necessary to get more ethnically diverse people on the registry. I was excited and confident in my decision. Anytime they asked if I was okay, and ready to process, my answer was always, ‘Yes, let’s do this. I’m ready!’

I donated my blood stem cells to Justin in July 2014. He’s back in school, enjoying his teenage years and his life no longer revolves around sickle cell disease.

I am incredibly grateful for the opportunity to save someone’s life. Sickle cell disease affects 1 out of every 365 African-Americans, and we only have a 23% chance of finding a match on the registry so it’s important for more people to join the registry to provide these life-saving cures. Looking back, my advice for potential donors is: 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?

Celebrate World Marrow Donor Day, Sept. 15!

Posted September 10th, 2018 by Be The Match and filed in News
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Thank you to all the blood stem cell donors and registry members who are saving lives around the world!

Did you know saving lives through blood stem cell donor is a truly international mission?  Nearly 50% of all blood stem cell transplants use international donations!

Be The Match is one of 100 organizations from 57 countries that celebrate World Marrow Donor Day to thank everyone who has donated blood stem cell donors, via marrow or PBSC, as well as registry members who are standing ready to donate to any patient in need. It is also a day to raise awareness of the need for more people to sign up—especially young, ethnically diverse donors who help increase genetic diversity on the registry.

Patients and their families are tremendously grateful to every one of the more than 32 million people across the globe who are offering hope of a cure.

Help celebrate the 1.2 million transplantations worldwide by inviting friends and family to join the registry to save a life.

  • Share Mike and Adriana’s heart-warming story featuring a donor and recipient meeting for the first time.
  • Encourage friends and family to join our life-saving community by sharing Join.BeTheMatch.org/WMDD2018
  • Thank donors and registry members on social media by saving and sharing the Thank You graphic. Tag @BeTheMatch in your post and use hashtags #ThankYouDonor, #WMDD2018 and #BeTheMatch

 

Understanding CAR T Cell Therapy

Posted September 5th, 2018 by Be The Match and filed in News
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CAR T cells are a new way to treat some cancers using gene therapy. This treatment helps your own immune system find and destroy cancer cells. The treatments using CAR T cells are primarily for people who have had other standard treatments, like chemo or transplant, in which the treatments haven’t worked and the disease has relapsed or is refractory.

In our new, easy-to-understand video, Linda J. Burns, M.D., Vice President, Health Services Research, and Scott Kerwin, R.N., M.N., C.C.R.C., C.C.R.N., Clinical Trial Patient Education Specialist, explain:

  • What CAR T cell therapy is and how it works
  • How CAR T therapies are made
  • Who it may help
  • What the treatment is like
  • Potential risks and benefits
  • Questions for patients to ask their doctor
  • Costs of the therapy
  • Centers that offer CAR T therapy

Watch this video to learn what CAR T cell therapy is, who it may be for, and the risk and benefits of the treatment.

Getting active after transplant: Tips for a gradual return to healthy exercise habits

Posted September 5th, 2018 by Be The Match and filed in News
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You may feel ready to get back to some of the healthy habits you had before transplant, or start some new ones. Just like before your treatment, being physically active is one of the keys to feeling better and staying healthy.

Find a routine that keeps you motivated

Regular physical activity can help you feel better. Many transplant recipients say they have less pain, more energy and sleep better when they make physical activity part of their day.

“My recovery went a lot better due to exercise. Start as soon as you can and do whatever you can because there’s going to be a tremendous long-term benefit from it,” says David, a transplant recipient.

Talk to your doctor first.

When you feel ready to start exercising again, talk to your doctor first and follow their recommendations. It’s best to start slow and gradually increase your activity level. For example, start with a small goal like walking down the street and back. Then, increase your distance as you feel able. Continue to increase your distance until you are able to walk at least 30 minutes a day.

“Once I started walking, I just felt better—physically, emotionally and mentally. It made a huge difference,” says Kay, a transplant recipient.

If walking isn’t enjoyable for you, try another aerobic activity, like riding a stationary bike, climbing stairs or dancing. Again, start with a small goal and add new goals as you are able. Once you’ve built up your strength, try to do aerobic activity for at least 30 minutes a day.

Don’t forget to do strength training and stretching, too. Start slowly. Even lifting soup cans at first can help increase your bone density and muscle strength and lower fatigue (tiredness). Gentle stretching and activities like yoga can help you increase your flexibility, and are good for your joints.

As you get stronger, you can slowly increase the intensity of your aerobic activity and strength training.

Is complementary or alternative medicine right for you?

During your treatment and recovery, you may have heard about complementary or alternative medicine (sometimes called CAM) and wondered if it is right for you as part of routine health lifestyle. The answer? It depends.

CAM practices that are generally safe include those that promote relaxation, well-being and movement such as:

  • Meditation and prayer
  • Guided imagery
  • Massage
  • Art and music therapy
  • Yoga
  • Tai chi
  • Reiki

No matter which CAM practices you are considering, do your research and talk with your doctor before you start.

Not sure where to begin?

If you’d like some help getting started on an exercise routine, ask your doctor for a referral to physical therapy. Physical therapists can help you make an exercise program that’s safe for you and meets your needs. Check with your health insurance company because physical therapy costs might be covered by your policy.

No matter how you get started, find a routine that you enjoy and one that keeps you motivated.

Celebrate progress

During early recovery, your focus is likely on what is right in front of you, like getting to appointments, taking medicines, eating and resting. You may have had to go back to the hospital. You may feel discouraged.

Progress can sometimes be hard to see during recovery. Reflect on some of the milestones as you regain energy and strength for physical activity. Ask yourself, “What is one thing I did today that I could not do a month ago?”

For more information and support

 

 

 

Support for siblings after your child’s blood or marrow transplant

Posted September 5th, 2018 by Be The Match and filed in News
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Transplant and recovery is an emotional and challenging time for families. Each family member will cope differently as your child recovers. Your child’s siblings may experience stress in different ways, too. Here are some of the signs of stress to watch for in your other children and ways to help them cope in healthy ways:

 Signs of stress for children may include:

  • Changes in eating habits
  • Trouble sleeping
  • Drop in school performance
  • Headaches
  • Worry
  • Irritable

If you notice these signs in your child, talk to your child’s health care team. They can share resources to help you and your family.

Some things you can do to help your children cope with a sibling’s transplant and recovery include:

1. Keep a routine

Children find comfort in routines. Whenever possible, help your children continue their normal activities.

  • Prioritize family time. Make time to check-in as a family each day.
  • Keep a few family activities, such as breakfast or dinner, at the same time every day
  • Go over your family’s calendar together every few days or so, and be sure everyone knows what to expect and when.
  • Arrange for your children to participate in school activities and spend time with friends on a routine basis. For example, if your focus needs to be on your child’s transplant recovery, ask other family members and friends for help so your other children can continue their scheduled activities.

Tools like ShareTheCare.org and LotsaHelpingHands.com can help you organize help from family and friends.

2. Help your children express their feelings

It’s normal for children to have many different feelings when their brother or sister is sick and recovering from transplant. Sometimes they may feel isolated and find it hard to talk about their feelings. It’s common for siblings of children undergoing transplant to feel:

  • Lonely
  • Sad
  • Anxious
  • Jealous
  • Guilty
  • Afraid

You can help your children identify and express their feelings, and manage their emotions in a healthy way. Depending upon their age and developmental stage, here are some ways you can help your children identify their feelings and talk about them:

  • Use dolls or action figures to have your children act out their feelings.
  • Listen and provide reassurance.
  • Have your children draw pictures of how they feel. Then, ask them to talk about what they drew.
  • Ask your children to finish sentences, like “I am worried about ___________.” or “You can help me feel better by ___________.”
  • Encourage your children to ask questions. Give as much information as they are able to understand.
  • Give your children a journal to write down their thoughts and experiences.
  • It’s okay to say, “This is new for me too,” and that you’ll work together to figure it out.
  • Talk openly and honestly about difficult topics.

Not all of the feelings your children will have will be negative. The transplant experience can lead to positive experiences for siblings, too.  Your children might become more sensitive to others’ feelings or have more coping skills

3. Show your children your support for them

You can support siblings by showing and telling them they are loved and you are there for them, too. Some ways to do this include:

  • Take time each day to talk about their day, activities and friends.
  • Celebrate their accomplishments.
  • Ask a family member or friend to spend quality time with your children when you can’t.
  • Encourage family and friends to include all of your children in their visits and well-wishes.
  • Tell each child the special things you love about them.

Your transplant center’s social worker or child-life specialist can also provide ideas and support.

Resources for you and your family

 

 

 

Follow up to “Why are there age limits for registry members?”

Posted August 23rd, 2018 by Be The Match and filed in Donor Stories
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Dr. Dennis ConferFrom Dr. Dennis Confer, Chief Medical Officer, National Marrow Donor Program

Our blog post in 2011 about age limits for Be The Match Registry prompted a lot of responses from registry members. Many of them were unhappy, in some instances, really unhappy, about the upper age limit. Be The Match Registry only accepts donors between the ages of 18 and 60. Registry members are automatically moved to inactive status on their 61st birthday. We’re happy that the post generated so much thoughtful and vigorous discussion. It shows the passion and commitment of donors toward helping patients. I will try to address some of the issues.

Transplant doctors prefer younger donors for their patients

In our previous post, we stated that one reason for the upper age limit is to provide the best treatment for patients. Doctors weigh many factors when selecting a donor for one of their patients; the age of the potential donors is one of them. Transplant doctors want younger donors. This preference is also data-driven; there are publications suggesting that patients with younger donors do better. See for example, http://bloodjournal.hematologylibrary.org/content/98/7/2043. Need to add Kollman BLOOD, 14 JANUARY 2016 x VOLUME 127, NUMBER 2.
Some of it is judgment. It is very clear that the bone marrow ages just like other organs; the cellularity of bone marrow declines with age. You can’t get as many cells out of an older donor as you can from a younger one, and higher cell dose improves the chances of success.

Additionally, there are little parts of each cell’s chromosomes, called telomeres, whose length reflects the residual ability of the cell to divide. Guess what? — the telomeres of bone marrow cells get shorter with aging. If you do bone marrow transplants serially in mice, the bone marrow poops out when the telomeres are gone. Can bone marrow from a 65-year-old donor last another 45 years or more in a 20-year-old recipient? We don’t know, but a lot of doctors are reluctant to do the experiment. Most would like to put young bone marrow in young patients, and older patients, too, for that matter. Finally, it is also true that diseases of the bone marrow, like myeloproliferative syndrome, myelosdysplastic disease and acute leukemia, are diseases of aging; their frequency begins to increase around age 45 and continues relentlessly throughout older age.

World Marrow Donor Association standards

The NMDP is one of 67 donor registries around the world that participate in the World Marrow Donor Association (WMDA, https://www.wmda.info), an organization that facilitates international donation and transplantation, and promotes the interests of donors. WMDA standards require donor registries to stipulate an upper age limit not to exceed 60 years. In fact, many other donor registries have set lower age limits for joining: age 55 in Germany, 50 in Canada, 40 in Australia and in the United Kingdom, 54 in Japan. Most of these registries consider members already on the file eligible to donate up to age 60. Maybe the NMDP could work around this standard if there was a compelling reason to do so, but the simple fact is — no registry in the world keeps donors past the age of 60.

Age is a factor in a person’s health

We know there are many people over age 60 who are in excellent health. There are also many who are not. I talked about aging bone marrow above, but other health problems also increase with age. The rate at which potential donors are found medically unable to donate is highest in NMDP’s older donors. This higher rate of medical deferral matters because it presents a risk to patients. When the selected donor turns out to be unable to donate, transplant may be delayed, which can jeopardize a patient’s likelihood of success. Medical deferral often happens late in the process, when the donor is being “worked-up” for donation, and it is a huge disappointment for everyone. This is another reason that doctors like younger donors.

Hitting the age limit

I myself turned 61 in March, 2011. I’m no longer on the registry and I am righteously indignant about it. I started exercising 3 years before and I had lost 20 pounds. I am in the best condition of my adult life. That nobody wanted me during the 20 years I was on the registry only further irritates me. But in reality, I would not be a good donor. There are more than 200 people with my HLA type on the registry and they are all younger than I am. So, there are other ways (in addition to doing my job) that I will be making a difference — and other ways you can, too. Contributing money or hosting a donor recruitment drive may not offer the same joy and satisfaction that the opportunity to donate marrow would, but these acts are crucial to saving more lives. I am also encouraging my sons to join the registry. They are young men and can be members for a very long time. And it’s about time they did something that makes sense!

 

Last updated: August 23, 2018

Spotlight on long-time Be The Match Volunteers

Posted August 9th, 2018 by Be The Match and filed in Volunteer Stories
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When Karen Lorentz’s three year old son Bob needed a live-saving bone marrow transplant, she became involved with Be The Match.  21 years later, Bob is cancer free and Karen and her community have found a way to give back to help support other families in need of similar live-saving treatments.

She and her neighbors have rallied behind Be The Match and its mission by becoming volunteer couriers.  Karen, her husband, and their friends John and LeAnn Savereide are all now volunteer couriers for Be The Match.  In 2017, Be The Match volunteers contributed over 164,000 hours dedicated to all aspects of our mission, saving nearly 6,100 lives including our 337 volunteer couriers that completed 2,268 product deliveries.

Be The Match offers many different volunteer opportunities, allowing those individuals to have a direct impact on patients with blood cancers and diseases. John’s advice is to “apply and hope you are selected. It has to be one of the most interesting and rewarding volunteer opportunities that exists.” John also says that the most rewarding aspect of volunteering with Be The Match is thinking about the patients receiving the product, and what it means for them and their families.

According to Karen’s neighbor LeAnn, who is also a volunteer courier, “The most rewarding aspect of this job is thinking about the people waiting for the product and what it means for them. Having loved ones who have received an unrelated match I know how important it is.” By confidentially delivering these life-saving stem cell treatments to patients in need, the volunteers feel a sense of responsibility, hope, and satisfaction.

When asked why she has continued her work as a volunteer with Be The Match, Karen says, “Well, quite simply, I am addicted to saving lives. I have had many volunteer jobs over the years and this one I find to be the most rewarding. Someone 21 years ago volunteered to save my little boy’s life and a courier delivered the lifesaving cells to us. It gives me great satisfaction to think I am now a courier and able to do this for a patient, and giving back something that was given to me.” Watch their video to hear more of their story and what it means to be a volunteer courier

Be The Match volunteers are needed across the nation and there is something for everyone.  Whether you want to help out at fundraisers, support our mission or work directly with patients and donors, you can help deliver hope for patients and families dealing with blood cancers and diseases.  If you are interested in learning more, visit https://www.bethematchvolunteer.org/

Super Star Advcocate: Caron Myers

Posted August 6th, 2018 by Be The Match and filed in News
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Back in 1983, Caron’s sweet, 5-year-old daughter Brandy was diagnosed with cancer. The previous year, doctors thought her illness was just juvenile rheumatoid arthritis. Months later, they found out how wrong they were. She was diagnosed with Stage 4 lymphoblastic lymphoma, a sister disease to leukemia. For the next three years, she was treated with a series of intensive chemotherapy. After a tough fight, she went into remission and was stable for about a year.

Just as the following March winds began to blow, so did a relapse of the disease. At that point, she relapsed with Stage 4 Acute Lymphocytic Leukemia (ALL), and doctors said her only hope would be blood stem cell transplant. The year was 1986.

There are two factors in Brandy and Caron’s story that played into the development of the C.W. Bill Young Transplantation Program and the start to NMDP/Be The Match. Brandy’s primary pediatric oncologist was Dr. Jerry Barbosa. But, a new doctor had joined forces with Brandy’s hospital – All Children’s Hospital in St. Petersburg, Florida. His name was Dr. Robert Goode, and he was helping develop a new bone marrow wing for the oncology unit. He was known to his fellow doctors as “the father of bone marrow transplantation.”

Caron’s father, on the other hand, was involved in politics, and her family had close relationships with many political figures. During Brandy’s fight, she met President Ronald Reagan, at the behest of Senator Paula Hawkins, then Vice President George H.W. Bush and Second Lady Barbara Bush. Her family also had a close relationship with Congressman C.W. Bill Young who would often visit the hospital and regularly check on Brandy’s condition.

Congressman Young wanted to help not only Caron and Brandy, but others dealing with the same kind of pain from life-threatening blood cancers and blood diseases. Caron asked Congressman Young, “With the advent of computers and blood banks, why can’t [the doctors] merge things together to create some sort of clearing house, so it would help everyone?” He went to work on finding a solution, which would ultimately result in the C.W. Bill Young Cell Transplantation Program operated by the National Marrow Donor Program/Be The Match.

Unfortunately, at the time, the registry was in the very early stages of development. Brandy’s only option was to receive an autologous blood stem cell transplant, meaning she would be her own donor. Brandy had to travel to the University of Minnesota where she received the transplant, which was her only chance at survival. Sadly, on Mother’s Day 1987, Brandy died.

Congressman Young was one of the first phone calls Caron received, as well as condolences from the Reagans, the Bush family and many other members of Congress who had supported the legislation. In the Congressman’s address to the House floor, he mentioned Brandy—she inspired legislation that helped others find a match on the program’s registry and helped cure life-threatening diseases like her own.

Caron continues to use Brandy’s story as an opportunity to persuade policymakers to help others. She has been fearless in her advocacy. As Caron says, “They put their pants on the same way you and I do. Many of them come from humble beginnings. Everyone has a story, and politicians are no different.”

Jason Carter Clinical Trials Program: One year of helping patients find clinical trials

Posted July 9th, 2018 by Be The Match and filed in News
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Every year, thousands of patients are diagnosed with blood cancers and other life-threatening diseases. For many patients, treatment through clinical trials provides hope and a potential cure.

But finding clinical trials can be challenging, so the NMDP/Be The Match partnered with the Jason Carter Clinical Trials Program (JCCTP) to help patients find and join clinical trials. At the heart of the JCCTP is a patient-friendly website, which is marking its one-year anniversary in July.

How the JCCTP website helps patients and their families

More than 250,000 clinical trials are listed on the U.S. government’s ClinicalTrials.gov website. However, these trial listings are very technical and patients have a hard time determining if they are eligible to join a particular trial. To make it easier on patients and their families, NMDP/Be The Match has found the most relevant clinical trials for patients with blood cancers and blood disorders and rewritten them to make them easier to understand. In the first year of the program, over 1,200 clinical trials have been added to the JCCTP website in a way that makes them much more accessible for everyone.

Financial assistance to help with travel to clinical trials

Last fall, The Drs. Jeffrey and Isabel Chell Clinical Trials Travel Grant was created in partnership with the JCCTP to provide financial help to qualified patients. The first travel grant was awarded in November and the patient received help paying the necessary travel costs for clinical trials, including:

  • Patient and companion air travel: booked by dedicated travel agents
  • Ground transportation: gas, parking and public/mass transit (bus/train/cab/etc.)
  • Accommodations: hotel, temporary housing and incidentals

Recognition for the JCCTP

In May, NMDP/Be The Match was presented with the Innovation Programs Award for the JCCTP at the 2018 Institute for Healthcare Advancement Health Literacy Conference. This award shows just how important it is to have a program that offers the much needed assistance to those that are seeking more information on how to find the right clinical trials.

Other features of the JCCTP

Even after using the search tool to find clinical trials that may be a good fit, patients and their families may have more questions.

As part of the JCCTP, NMDP/Be The Match has a full-time Clinical Trial Patient Education Specialist to provide free one-on-one support by phone and email to help patients and families find and join clinical trials.

Scott Kerwin, MN, RN, CCRC, CCRN, is the JCCTP Clinical Trial Patient Education Specialist, and he says that the most valuable help he provides is navigating the clinical trial system. “Because of my many years of working in hospitals as a bedside and clinical research nurse, I know how the system works,” he says. “I know how to contact the right people in the right roles.”

To contact Scott, call 1(888) 814-8610 or email clinicaltrials@jcctp.org.

About the Jason Carter Clinical Trials Program

The JCCTP is funded by the Carter family, in memory of their son and brother, Jason Carter, who lived with leukemia for more than 4 years, passing away in May 2016, at age 28. He participated in 2 clinical trials, which gave him more time with his family.