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

A story of life-saving generosity

Posted July 28th, 2017 by Be The Match and filed in Donor Stories
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Jox, donor, with his family

Being selfless can mean different things to different people.  Parents are often described as selfless when it comes to loving their children or giving them all they need in order to succeed in life.

But what do you call someone who has given so much of themselves to others?

Jox, with his mother-in-law, after donation (both center)

Jox is a 43 year old teacher, father and husband – and the ultimate altruist. In 2008, he donated blood-forming stem cells to help a searching patient in desperate need of a bone marrow transplant. But his selflessness didn’t stop there. Jox went on to donate a kidney to his mother in law whose kidneys began to fail after her battle with cancer, he cut off 10 inches of his hair for Locks of Love (yes, he had a “sick mullet”), and Jox has donated more than 11 gallons of blood to Memorial Blood Centers. Generosity is at the core of who he is.

Jox joined the Be The Match Registry during his college days, when a nurse brought it up during one of his blood donations.

Jox, donor

Fast forward to 2008 when he got a call that he was a potential match to a searching patient. Jox said he didn’t know a lot about the individual – only their age, gender and diagnosis. But he never once hesitated to commit. He donated bone marrow that same year, and said that the collection hurt less than raking the yard.

He recently reflected on the process; “It’s bigger than just the patient. My donation is extending someone’s life, and that not only effects the life of the patient but it also impacts the lives of their family and friends.”

Jox wants others to be inspired to sign up to the Be The Match Registry. When asked what he would say to other people considering joining the registry, he replied, “Do it yesterday. Put yourself in the situation where you need something and you’re out of options, but there are people who have exactly what you need to live. By donating, the person you are helping gets more time on earth to live.”

To join the registry on Jox’s behalf, please visit https://join.bethematch.org/DonorJox

Why I do what I do for Be The Match

Posted September 27th, 2016 by Be The Match and filed in Donor Stories, News
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As told by Jeff, donor and advocate

“Save this girl’s life and I’ll be an advocate to the cause for the rest of mine.” This was the short prayer whispered just before I was anesthetized to harvest my bone marrow that was perfectly matched to a sixteen-year-old girl fighting leukemia. Eight years later, I’m please to share that my recipient, Kim is living life to the fullest with my adopted immune system. 100% engrafted and cancer-free!

Within a few days of the procedure life returned to normal, but my appreciation for it was different. Somewhere out there was a young lady fighting for her life and I knew that her family was asking themselves the same questions that I was. Were my cells good enough? What would happen if they weren’t? At the very least I knew that the procedure would give this family something that they had longed for, which has been confirmed by countless other families fighting a blood cancer. For many a bone marrow transplant can be a cure, but for all it provides hope.

To me, a bone marrow transplant is the perfect fusion of fate, science and miracle. Fate, to know that a compatible stranger chose to join a bone marrow registry; science, to facilitate the process; and miracle, to know that these life generating transplanted cells can alter the course of another person’s mortality. Believing this – I had to get involved further.

I started my advocacy at marrow drives, lending a hand to dismiss the fears about the donation process. As we all benefit from talking to others with firsthand experience; attending these drives helped educate and answer questions of those interested but concerned about the procedure. Several people join the registry, as I did, for someone they know who is in need of a transplant. At these drives, I help folks see the “Pay It Forward” concept. Although you may not be a match for the person you know, you could be for someone else in need, just as another person joining at another drive somewhere out there may be a match for your acquaintance.

I am involved with the CIBMTR (Center for International Blood and Marrow Transplant Research) which is the research program of Be The Match. As a consumer advocate, I’ve participated over the last five years helping to translate information, such as outcomes from a clinical trial into a readable format for the typical lay person to understand. It was an honor to be asked this past year to co-chair this advocacy group.

I’m also very proud of the money raised by co-chairing a local Be The Match Walk+Run event for the past three years. These events bring together survivors, caregivers, patients and donors to celebrate victories, honor those lost and help recruit new potential donors to the registry.

Finally, I take the most pride in my volunteering efforts as a stem cell courier. The transplant process is a logistical orchestra of physicians, scientists, lab techs, collection center personnel and transplant hospital staff all coming together for a patient in need. It is a privilege to hand-carry these coolers containing someone’s “second chance” from their altruistic donor to their intended recipient. A trained volunteer courier is as close as it gets to being Santa Claus.

If you read this chances are you’re already somehow involved with the cause. Mine are but a few of the many ways to help and I encourage all to engage. Maybe it’s writing to congressional members in support of NMDP/Be The Match’s legislative activities; or it’s reaching out to a local recruiter and helping in your community. Whether you’re a caregiver, a long term survivor or a fellow donor – we all have unique experiences that are vital to the next patient in need. As for me, I’ll keep holding up my end of that prayer.

An Ocean Away

Posted December 3rd, 2014 by Be The Match and filed in News
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The life-changing call:

On September 9th Duke’s phone rang. Expecting one of his four children or his parents, he picked up the call. Instead, he heard the voice of a man he had never met – an oncologist. “I need you to come to the hospital tonight,” the doctor told Duke. He broke the news directly, “you have leukemia.”

Duke was at the hospital earlier that day being tested to determine the cause of his declining condition. He knew that something was wrong and was actually relieved to learn of the diagnosis and begin working out a treatment plan.

Shortly after arriving at the hospital that evening, Duke underwent additional testing. Within a day, his results were back. He was then faced with an even harder fact to comprehend, a fact that would shake his entire world: without immediate treatment, Duke only had a month to a month and a half to live.

That was six years ago, when Duke was 44. Thanks to a complete stranger, an ocean away, Duke is alive to share his story of faith, good fortune and, above all – survival.

The fight to survive:

 Shortly after Duke was diagnosed, he started chemotherapy. Amazingly, after a year of extremely aggressive treatment, Duke was pronounced cancer free; but he wasn’t in the clear just yet. His doctors told him they were certain the cancer would come back, and when it did, the disease would be stronger and more aggressive.

Unfortunately less than nine months later, the doctors’ prognosis was right. Duke’s cancer was back, and this time, he needed more than chemotherapy to survive. “My diagnosis was aggressive, so they knew they were going to have to do something to try and save me. The doctors told me, you aren’t going to survive without a marrow transplant,” said Duke.

The search for a match began by testing Duke’s siblings. When they tested negative, his doctors turned to the Be The Match Registry. That’s when Duke won what he would later call his “lottery ticket,” – a matched marrow donor. After intensive chemotherapy to prepare his body, Duke received the transplant that saved his life.

The meeting of a lifetime:

Immediately after his transplant, Duke knew he wanted to meet the young man that gave him his life back. “In my mind, I must have painted my donor a million different ways. I had thousands of questions for him,” said Duke.

In America, if both parties agree and the transplant center allows, a donor and recipient can meet one another, but must wait one year after transplant. Because Duke’s donor was from Germany, the waiting requirement was longer. After two years, Duke was finally able to reach out to the man who, at 27, saved his life by donating Peripheral Blood Stem Cells (one of two methods of marrow donation). Duke offered his donor the opportunity to fly to Colorado so they could meet.

In October, Duke’s donor, Marco, did just that.  Before he arrived, Duke had so many things he wanted to tell Marco, but most of all he wanted to say thank you. “There is a cascade effect when someone is diagnosed. It cascades to family to friends, to a huge amount of people, not just one. I wanted to make sure Marco knew that what he did affected a lot of people. I wanted my entire family to have the opportunity to give him a big hug and say thank you”

Marco and Duke spent the next 10 days together, getting to know each other and developing a deep bond. “It was definitely a connection we will maintain,” said Duke.

The blessings along the way:

When Duke looks back on his experience, he believes God had a plan for him and this faith is what helped him through the entire ordeal. “If everything was perfect, and bad things only happened to bad people, life wouldn’t be as brilliant as it is,” he said. “Bad things happen to good people too, there is no way around it, this allows us to realize just how fortunate we are.”

In addition to recognizing how fortunate he was, Duke learned something else about himself – he is stronger than he ever could have imagined. “You may think you know how you would respond to a life-changing event, but I would argue that you will never really know how strong you are until you are in the foxhole, fighting for your life,” he said.

Marco did what he promised, donated marrow to save a life. “At the end of the day, that’s what you want. You want everyone to have the chance like I did,” said Duke.

 

Finding Tamino’s Cure – Two Dads Unite to Help

Posted October 8th, 2014 by Be The Match and filed in News
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Two young fathers, Joe (far left) and Justin (far right), used their first-time marrow donor-recipient meeting on Good Morning America to draw attention to another young father's search for a marrow donor. They're helping spread the word about Tamino (center) whom they met at the inaugural NYC Be The Match Walk+Run.

Two young fathers, Joe (far left) and Justin (far right), used their first-time marrow donor-recipient meeting on Good Morning America to draw attention to another young father’s search for a marrow donor. They’re helping spread the word about Tamino (center) whom they met at the inaugural NYC Be The Match Walk+Run.

In September, ABC’s Good Morning America broadcast a special first-time meeting of a Staten Island, NY man who beat lymphoma and the Dallas marrow donor who helped him do it. Unbeknownst to them, they led parallel lives: both 35, married and each a father with young children.

The title: “Dad” means everything to both of these men. So, it was no surprise that as excited as they were to meet, they turned their good news into an effort to help another young father searching for a marrow donor.

The dads are spreading the word about Tamino, a father from NYC suffering from Severe Aplastic Anemia. They’re asking others to join the Be The Match Registry® online in hopes of finding Tamino a life-saving marrow donor so he can watch his one-year-old son, Matteo, grow up. Currently there is no match for Tamino on the Be The Match Registry. He is of Brazilian, French, Italian, Bolivian and Colombian ancestry.

“No child should grow up without a father, not if we can help it,” said Justin Jenkins the Dallas dad who donated marrow so Staten Island father Joe Yannantuono could watch his 4-year-old grow up.

“Let’s find Tamino a marrow donor. Help teach his young son, Matteo that the world may be big, but it’s full of people willing to stop what they’re doing for a moment to help a little boy in Queens who needs his daddy.” Join the registry online at join.bethematch.org/tamino.

Share this message and help spread the word. If you’re not a match for Tamino, you may match one of the thousands of other patients battling blood diseases and searching for their cure.

Dwight’s Donation Story

Posted July 2nd, 2012 by Be The Match and filed in Donor Stories
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Dwight donated peripheral blood stem cells (PBSC) in 2000Dwight’s donation story begins in 1991 while working in a hospital laboratory.  After drawing blood from potential donors who wanted to join the Be The Match Registry®, he was inspired to join himself.  Not long after, a cousin with Leukemia required a bone marrow transplant to live. While Dwight was not an HLA match, their family was able to find a match with an unrelated donor on the Be The Match Registry. Dwight, a medical technologist of more than 25 years, was grateful for this stranger’s gift and became hopeful that one day he also could save a life through marrow donation.

The call and family support

It wasn’t until the summer of 2000 that Dwight was called as a potential match for a patient. After completing further confirmatory blood tests, Dwight was told that he was the best possible match for a woman, and that he would be donating peripheral blood stem cells (PBSC)—one of the two methods of donation. “When I was chosen, I wanted to both yell and cry for joy for what I could do for this patient,” said Dwight. Family, friends, church, work—everyone was very supportive of Dwight’s decision to donate.  During his confirmatory blood testing, he tried to lighten the mood by singing, “stem cell man, stem cell man, I wanna be a stem cell man!”  Prior to Dwight’s donation, his colleagues even gave him a “Stem Cell Man” t-shirt to acknowledge the importance of his gift. Dwight was able to bring his family to the donation center to share in the experience and to support him through the donation.

The PBSC donation process

PBSC donation is a nonsurgical procedure (much like donating plasma or blood) that takes place in a blood center or outpatient hospital unit. On the four days leading up to Dwight’s donation and on his donation day, Dwight was given injections of a drug called filgrastim to stimulate stem cell growth. This is a part of all PBSC donations. “On the second day of injections,” said Dwight, “I could actually feel the stem cells multiplying!”

During the PBSC donation, Dwight’s blood was removed through a needle in one arm and passed through a machine that separated out the blood-forming cells. Dwight’s remaining blood was returned through his other arm. Typically, a donor’s blood-forming cells are back to their normal levels within 4 to 6 weeks.

Dwight’s message to registry members

“Don’t lose hope that you might donate some day,” said Dwight. “It may never come, it may come tomorrow—but it’s important to keep your contact information updated so you can be contacted if you’re a match.”


Editor’s note:
The patient who received Dwight’s stem cells passed away just under a year after her transplant. Dwight still sees his donation as a positive experience today because he was able to give the patient hope and time. He would donate again in a heartbeat.

Click here to read Dwight’s brother, Ray’s donation story.

Organ donation and Facebook’s Life Event

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Organ donation and Facebook’s Life Event – an opportunity for registry members

After taking a personal interest in organ donation, Facebook CEO Mark Zuckerberg announced that organ donors can now add their organ donation status as a Facebook Life Event. Did you know that you can easily add your Be The Match Registry commitment on Facebook too? Here’s how:

Save the image below to your computer.

Be The Match Facebook Badge

From your personal Facebook timeline page:

  1. Click Life Event in the status update window at the top of your timeline
  2. Select Health & Wellness
  3. Select Other Life Event
  4. Title the event Joined Be The Match Registry as a potential Marrow Donor
  5. Upload the Be The Match image from above (right click to save
  6. Insert the date you joined the registry – if you are unsure, please call us at 1-800-MARROW2
  7. Add the location and a line or two about your story (optional)
    • For donor/patient confidentiality reasons, please don’t post your donation date if you have donated marrow or PBSC.
  8. Select your audience (next to the Save button) and click Save

Note: As with some personal information on Facebook, this Life Event status can be kept private or shared publicly or only with friends. In order to share this Life Event, you need to upgrade to Facebook timeline. To get started go to the Introducing Timeline page and click Get It Now. Learn more about upgrading.

College student gets in the game – Patrick’s donor story

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Patrick Abdul was a leader in Wagner College football team’s “Get in the Game. Save a Life” marrow donor recruitment campaign in 2008. Their efforts added more than 200 students to the Be The Match Registry.

Two of those students have already been called as a possible
match. One of them was Patrick.

A two-year-old patient
Patrick went on to donate to a two-year-old boy with anemia. “The future for that two-year-old little boy hopefully is long and healthy,” says Patrick.

He hopes that his recipient “gets to do everything that I was able to do as a kid, with no health problems.… And grows up to play football, to be a strong guy like me,” he adds with a smile.

The chance to save a life
The chance to save a life meant a lot to Patrick. He was happy to be part of his team’s community service event adding people to the registry, but he didn’t give it much thought. When he learned he was a match, it really hit home for him that this was something real, something that mattered. He could actually be the one to save another person’s life. It was a great feeling.

The donation process
He donated peripheral blood stem cells (PBSC), which required getting shots of a drug called filgrastim for five days. The filgrastim moves more blood-forming cells into the bloodstream where they can be collected for transplant.

“I’m not going to lie,” says Patrick. The side effects of the shots felt like getting the flu.

“So that wasn’t too pleasant. But it was only for five days, and you’re giving someone a lifetime. It was 100% worth it to me.”

Patrick is featured near the end of the new “Get in the Game” video made to inspire coaches and players to get involved in adding donors to Be The Match Registry.

Be The Match Foundation kicks off patient assistance campaign

Posted November 17th, 2009 by Be The Match and filed in Patient Stories
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As of Tuesday, more than 5,700 new marrow donors joined Be The Match Registry as a result of the Joey Stott story featured on ABC’s “Extreme Makeover: Home Edition” this week. Before Joey’s cancer diagnosis and subsequent marrow transplant, the Stott family had purchased a farm and made efforts to ‘go green,’ opening a local farmer’s market. A fire made their old farmhouse unlivable. This devastation happened on top of financial hardships that the Stott’s endured from uncovered transplant-related expenses.

In an effort to raise $1 million to give bone marrow transplant patients like Joey one less thing to worry about, Be The Match Foundation collaborated with “Extreme Makeover: Home Edition.” A campaign for patient assistance funds was created and officially kicked off during Sunday’s episode.

For more information about the patient assistance funds visit http://bit.ly/c5Blf

To view Sunday’s episode of Extreme Makeover:
Home Edition go to http://bit.ly/3U5WAQ

To join the Be The Match Registry go to www.marrow.org/join

Wilbur’s marrow donation experience

Posted October 7th, 2009 by Be The Match and filed in Donor Stories
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Wilbur donated bone marrow through the National Marrow Donor Program, which operates the Be The Match RegistrySM. This is his story.

The opportunity to pay back
My wife works for the post office, and this was how we became involved. (Editor’s note: The United States Postal Service’s long partnership with Be The Match has added more than 47,000 donors to the marrow registry.)

But the reason for my donation goes back to before I was born. It hit me like a brick wall when I got the call to possibly be a bone
marrow donor:

I’ve finally found a way to repay the person who not only
gave me life, but also saved my life very early on.

My mother’s choice
While pregnant with me, my mother was told she had developed a form of cancer. The doctor told her she could treat the cancer but the baby wouldn’t live through the treatment, or she could bring the baby to full term but she would die because the cancer would be too far along. Without pause, my mother decided the baby would live.

As it turned out, the doctor was wrong and my mother didn’t have cancer. Had she decided to have the treatment, I wouldn’t have been born. Service to others, putting them first before her own needs — that’s how my mother, Mary E. Baughn, lived her life. (After 74 years and two bouts with cancer, Mary passed from this life to her heavenly reward.)

My choice
Second thoughts about doing this? Never entered my mind!

I hate needles and my family knew this. They all wondered how I would go through the “pincushion” phase.

Well, it wasn’t that bad. I really never had a lot of pain, even after the marrow collection procedure.

Everyone I talked to at the National Marrow Donor Program, especially my contact person Cindy Hofkes, made me feel like I was the only person they were dealing with. The donation procedure at Miami Valley was a breeze, thanks to all the wonderful people there.

Only a few people get a chance to possibly save a life. Sign up! Be a match!