2014 Be The Match Community Artwork Contest

Posted August 13th, 2014 by admin and filed in News

Be The Match is excited to announce the launch of our FIRST Community Artwork Contest. This contest, open to the general public, is a creative outlet for our Be The Match community to get involved. The contest kick offs on August 18, 2014 and we will be accepting submissions though August 29, 2014.

Learn more about the submission process and judging criteria >

Before you get started, here is what you need to know:

  • We’re looking for artwork that best illustrates what Be The Match means to you.
  • There will be five age categories.  There will be two finalist chosen from each category, with a total of 10 finalists making it to the final voting round.
  • Beginning the first week in October, Be The Match will be posting the finalists on our Facebook page where the community will get the opportunity to vote for their favorite pieces!
    • You’ll have 48 hours to vote (Facebook “Like”) for the artwork you like the most. The artwork with the most votes (Likes), wins the age category.
    • There will be a total of five winners, one from each age category.
    • The winning artwork will be featured as Be The Match’s 2014 holiday greeting cards, available for purchase on Shop Be The Match

Interested in getting involved? Please read and agree to the following agreements:

 

SUBMIT your artwork today!

Have questions? Read our Artwork Contest FAQs >

 

Note: NMDP/Be The Match Employees are NOT eligible to enter.

Oops…I forgot: Coping with chemo brain

Posted August 1st, 2014 by admin and filed in News

Joette Zola photo-crop2

If things just aren’t sticking in your brain like they did before transplant, you’re not alone. “Chemo brain”—the term often used to describe thinking and memory problems after transplant—is a common experience among people who have had chemotherapy.  For most people, chemo brain doesn’t last long. But for others, it can last for months or years. Fortunately, there are things you can do to help you manage day-to-day despite those “oops, I forgot” moments.

While many people think of chemo brain as being forgetful, that’s not the only symptom. Some of the more common chemo brain symptoms include:

  • Having a hard time remembering a word or someone’s name
  • Difficulty staying focused
  • Trouble learning new things
  • Difficulty organizing daily activities
  • Having a hard time doing several tasks at the same time

If you’re experiencing these symptoms, occupational therapist Joette Zola, OTR-L, with Courage Kenny Rehabilitation Institute, part of Allina Health, says to talk to your doctor.

“While your symptoms are likely chemo brain, it’s important to let your doctor know about any new symptoms or changes you notice during your recovery, just to make sure it’s not anything more serious. If it is chemo brain, your doctor can give you some coping strategies and tips for helping you manage your symptoms. If you need extra support, ask for a referral to a survivorship or rehabilitation program that can help,” shares Joette, who helps people learn to cope with the effects of chemo brain.

Managing chemo brain challenges

While there is no cure for chemo brain, Joette offers the following tips to help you cope:

  • Plan your days and weeks. Make sure your plan is realistic, and you schedule breaks to rest.
  • Do your hardest tasks at the time of day you find it easiest to concentrate. Do these tasks in a quiet place.
  • Support your memory. Use calendars, sticky notes, checklists, alarms and alerts on your phone.
  • Turn off things that might distract you like the TV or radio.
  • Try to focus on one thing at a time.
  • Keep your normal routines and habits to lower stress on your memory.
  • Don’t be afraid to ask others for help.

At the same time, Joette says it can also help to put your energy and attention towards good self care. “As you’re coping with chemo brain, there are triggers that can make it worse, like not getting good sleep, not eating well, and stress. Every person is a little bit different. Take note of what’s making your chemo brain worse, and try to avoid those triggers,” she explains.

Getting support from your family

As you’re coping with chemo brain, you may find it helpful to talk with your family. “If you try to hide what you’re experiencing from your loved ones, it can increase your stress and make you more tired. And, that can lead to more memory challenges,” Joette cautions. “By talking to your family, you can help adjust their expectations of you right now, and they can help to support your new coping strategies.”

Joette adds, “Know that you are not alone and you don’t have to manage these challenges on your own. Talk with your doctor and your family, and ask for the help you need to manage your recovery. Above all, be kind to yourself and use the strategies and routines that work best for you.”

See how others are dealing with chemo brain

“Chemo brain is very real; even now 6 years after treatment. You can make lists, and I make reminders on my calendar. So, you find ways to deal with it.” That’s just one piece of advice offered by Matt, a transplant recipient who’s dealt with chemo brain. Watch this video about Matt, Meghann, and health care experts talk about chemo brain and share tips for managing it.

From a private journal to a published book

Posted August 1st, 2014 by admin and filed in News

Editor’s note: This story is part of a three-part series on using writing to cope with the transplant journey. Links to the other stories can be found at the end of this post.

Brian_small_011Brian still vividly remembers the first time he wrote about what he and his wife, Betsy, were going through. It was a few days after Betsy’s diagnosis. He’d come home from the hospital, and didn’t know what to do. “I just started writing and it turned into a mass email to let everyone know what had happened. Writing it was therapy. It helped me process the fact that it was happening and what was really going on,” he says.

When he checked his email the next day, he had gotten countless emails of support. “I remember tears rolling down my face because I felt like we had this community of support. I also realized that I needed a way to keep them informed,” he shares.

Brian started a CaringBridge® site that he used to keep people updated throughout their journey. “It was an amazing tool for me to be able to write, offer my thoughts, and give updates. The messages we got back also lifted Betsy’s spirits,” he remembers.

While he used CaringBridge to write publicly, Brian also kept a private journal that he started when Betsy was in the hospital for her transplant.

“Instead of having all of this stuff running through my mind, I kept a journal. It became a good way to pass the time, and also a good way for me to get things out of my head and onto a piece of paper. With a journal, you can write and be really honest with yourself. Maybe even admit things in the journal you wouldn’t want to talk about with anyone else. In your journal, you can feel safe to let yourself vent a little bit, or let yourself be scared,” he says.

While it was never the original intent, several years after her transplant, Brian and Betsy decided to turn his journal entries and CaringBridge posts into a book, “Here Comes the Sun”.

“We had a friend who told us she’d printed out some of the CaringBridge posts and she would read them when she was having a rough day to put things in perspective. We thought that if she benefited from them, maybe other people would, too,” Brian says.

But, he adds, “Don’t think you have to do anything with your writing. I turned it into a book, but even if I hadn’t it still would have been really valuable for me to do it.”

Brian’s first tip for getting started writing is to keep a notebook and pen with you. “That makes it easier. When you have time and you have thoughts in your head, you can write it down. It doesn’t have to be beautiful prose. It can be bullet points. Just start dumping things from your mind onto the piece of paper. It doesn’t have to be anything good.”

And, if traditional writing isn’t your thing, “maybe draw pictures. Maybe write poetry. Or, maybe write something totally unrelated to transplant. Any of those things are valid,” Brian shares, “All that matters is that you put something on paper and it probably helped you in some way to get it out.”

Like Brian, Brianne also made some of her writing public during the transplant journey. She used a blog to share her experience and cope with her feelings. Read her story here. Sherri is like many people who choose to keep their writing private. Read how journaling helped her here.

If you’ve used writing to help you cope, do you have tips to help others get started? Share them with other transplant patients and caregivers on our Facebook Patients Connect Page.

Writing for ‘the big wide universe’

Posted August 1st, 2014 by admin and filed in News

Editor’s note: This story is part of a three-part series on using writing to cope with the transplant journey. Links to the other stories can be found at the end of this post.

Brianne-DSC_6730While some people like to keep their writing private, others find that sharing their story can be therapeutic. Take Brianne, for example.

“I’ve been writing since I could hold a pen and form letters!” she says. So for her, it only made sense to keep a record of what was happening. What started as plans for a private journal quickly became a public blog that she hopes may be helpful to other transplant patients.

“My friends and family wanted updates, so I thought I’d put something up online. The blog was set to private at first, but then I started reading other people’s blogs. I realized how helpful it was to read about other people’s experiences and actually get the nitty-gritty. The honesty of it made me realize I have a voice and I have something to share, and maybe in the end it will help someone else along,” she says.

She found that writing the blog, which she continues to update today, has helped her, too. “Writing has helped me process how I’m feeling. Writing it down makes me identify what I feel and what’s going on,” says Brianne, who had her transplant in July 2013.

It also helped her get through the not-so-good days. “Right after transplant, I could go back and read some of my older entries when I’d had little bursts of hope or small victories. It was a good reminder that it’s not always bad,” she shares.

Writing for the “big wide universe,” as Brianne calls it, wasn’t always easy. Sometimes there were things she wanted to keep private. In those moments, she turned to a personal journal.

While Brianne is a life-long writer, she says writing can benefit anyone. She offers this advice on getting started. “Start writing for yourself and just be honest. That’s at the core of writing. Just be honest with what’s going on in your head and your heart. The more practice you give yourself, the easier it gets and it just starts to flow out of you,” she says.

“If you can’t figure out the best way to say something, allow yourself to walk away from it for a couple hours or a couple days, and then come back to it,” she adds.

And, if you’re not sure if you want your writing to be public or private, Brianne says to keep it private at first. “When you write for yourself, you don’t have anyone to satisfy but yourself,” she says. “Once you get more comfortable or you feel there are things you want other people to know, that’s the time to start putting it out there.”

Like Brianne, Brian also made some of his writing public during the transplant journey. Later, he turned his private journal entries and CaringBridge® posts into a book. Read his story here. Sherri is like many people who choose to keep their writing private. Read how journaling helped her here.

If you’ve used writing to help you cope, do you have tips to help others get started? Share them with other transplant patients and caregivers on our Facebook Patients Connect Page.

A private escape

Posted August 1st, 2014 by admin and filed in News

Editor’s note: This story is part of a three-part series on using writing to cope with the transplant journey. Links to the other stories can be found at the end of this post.

??????????????????????“I’d never really journaled before. When my son was diagnosed with aplastic anemia, it was such a shock. I was trying to come to grips with the whole thing and I thought, ‘Maybe I should just try this journaling thing,’” shares Sherri, whose son T.J. had a transplant in 2013.

Journaling wasn’t easy for Sherri at first, so she started by just writing down her thoughts for the day. Then, she tried to make sure she wrote down one positive thing each time she journaled.

“On the not-so-positive days, I could go back and read the positive comments from another day. It helped me realize we could overcome what’s happening right now,” she says.

As she continued journaling, she found it was therapeutic. “Just writing my feelings down made things seem more manageable and concrete. It helped make everything less scary,” she adds.

Sherri’s writing has always been a private escape. “It was a way for me to come to grips with the whole thing on my own and very privately. Honestly, I don’t think anyone knew I was doing it.”

While she doesn’t journal as often now, Sherri still looks back and reads what she wrote. “It helps me realize just how far we’ve come.”

For people who think they may want to try writing but aren’t sure how to get started, Sherri offers this advice: “Just sit down and try to write a couple of sentences about how you’re feeling at that moment. It doesn’t have to be a chore or even something you do every day.”

“There may be things you have on your mind but don’t want to say out loud. That’s where journaling comes into play. It helped me feel like I was getting it out without needing a therapist that day,” she adds with a laugh.

Sherri is like many people who choose to keep their writing private. Others like to write blogs and even books to help them process their thoughts and share their experiences. Read how Brianne and Brian made the decision to make their writing more public.

If you’ve used writing to help you cope, do you have tips to help others get started? Share them with other transplant patients and caregivers on our Facebook Patients Connect Page.

Take a Look: Legislative Day 2014

Posted July 9th, 2014 by admin and filed in News

On June 12, Be The Match staff, representatives and advocates took to Capitol Hill in Washington, D.C. for the organization’s annual Legislative Day.

legday

With more than 80 meetings with legislators and their staff, Legislative Relations Director Chad Ramsey called the day a resounding success.

“We garnered support for continued program funding, as well as interest in our new Congressional Caucus to Cure Blood Cancer,” he said. “We also had important conversations with legislators that should help improve access to transplant for all patients.”

With a focus on ensuring access, Be The Match advocates and staff set out to educate legislators on three main topics: protecting access to transplant for Medicare patients, ensuring adequate coverage for transplant throughout the new health care system and understanding the continuing impact of sequestration.

Be The Match advocates and staff discussed the need for Congress to ensure inclusion of transplant in the networks of coverage created by the new health insurance marketplaces and adequately reimburse transplant therapies for Medicare patients.

In addition, funding for the C.W. Bill Young Cell Transplantation Program and the National Cord Blood Inventory, both operated by Be The Match, was recently cut by $3 million as a result of sequestration. This means that as many as 20,000 willing volunteer marrow donors and 1,000 cord blood units may not be added to the Be The Match Registry, unless funds to the programs are restored.

By addressing these crucial topics, Legislative Day participants helped legislators understand how they could save more lives by supporting Be The Match.

“We urged Members of Congress to protect access to transplant and to restore full funding to the C.W. Bill Young Cell Transplantation Program and the National Cord Blood Inventory,” said Ramsey. ”When Members of Congress get to meet with the patients whose lives have been fundamentally changed because of the programs they have supported, it brings about a whole new level of commitment.”

In addition to strengthening legislative support, Be The Match representatives attended a donor drive hosted by the Department of Defense, where 23 people joined the registry.

Legislative day is over, but we still need your support. Continued funding can be the difference between life and death for patients in need of a bone marrow transplant. Be the voice that saves a life. Take action now.

 

A donor who answered the call after 16 years on the registry

Posted June 6th, 2014 by admin and filed in Donor Stories

Altonet, marrow donorSixteen years after joining the Be The Match Registry® as a freshman in college, Altonet, now 35, learned that she was a matching bone marrow donor for a 52-year-old woman with leukemia. Though she hadn’t thought about her role as a registry member for years, she knew she wanted to donate.

“I felt it was a privilege and an honor to be able to give something that my body makes every day and be able to save a life,” Altonet recalled.

Altonet donated traditional bone marrow. Because she was under anesthesia, she did not feel any pain during the procedure. While she was sore for several days following the donation, she was able to go back to work within two days. Several months after her donation, Altonet learned that the recipient was doing well and was released from the hospital just months following the transplant.

Of her recipient, Altonet notes, “the one thing she taught me was how to love a stranger. Because I don’t know her, but I love that she is able to endure through such a difficult time. I prayed for her more than I prayed for myself or anyone else in a long time.”

Altonet has a compassionate heart for people, and a passion for singing. In fact, she’s competed on three national talent shows—Star Search, American Idol and Showtime at the Apollo.

Now she is lending her voice to help others by encouraging more people—especially those from the African American community—to follow her lead by joining the Be The Match Registry as potential bone marrow donors and saying yes if called as a match for a patient.

Before going through the donation process, Altonet heard a lot of common myths about donation – that it is painful and dangerous. “I want people to know that each individual’s experience is uniquely theirs. Don’t listen to what you may have heard—speak with people that are able to give you correct information about the process. It’s a rewarding experience and if you are ever selected to donate bone marrow then you should definitely consider it.”

Like Altonet, you could be the cure for someone with a disease like sickle cell anemia or a blood cancer like leukemia by donating bone marrow. It only takes a few minutes to join the Be The Match Registry. If you match a patient, you could be the only one out of millions who can save that patient’s life. Get the real facts about bone marrow donation at BTMItsOnYou.org.

 

It’s on you: Take action this July during African American Bone Marrow Awareness Month

Posted June 2nd, 2014 by admin and filed in Donor Stories, News, Patient Stories

A match is out there

Josh, searching patient Josh was diagnosed with sickle cell anemia at birth, a painful and life-threatening blood disease that most commonly affects African Americans. His first crisis from the disease occurred when he was only 6 months old. Although his spleen was removed to prevent another crisis, Josh suffered a stroke at 18 months old, paralyzing his right side of his body.

Now, at 7 years old, Josh’s best chance for a cure is a bone marrow transplant. Like 70 percent of patients, Josh does not have a matching donor in his family. His family, friends and even ABC’s Good Morning America have helped him in his search—hoping to find a match for Josh and others in need of a life-saving transplant. But out of the 11 million potential bone marrow donors listed on the national Be The Match Registry®, not one is a match for Josh.

Josh’s search for a match is more challenging, because of his African American heritage. Patients are most likely to match someone who shares their ancestry, and African American patients have the lowest odds of finding a match compared to all other populations. More African American donors are urgently needed to save more lives.

Vera, Josh’s mom, knows there is hope. “We know there is a match out there,” said Vera. “We just need people to step up and join the registry. Unless you actually go out and get tested, you may never know if you could be the one to save someone’s life.”

Donating is simple

Kendall, marrow donorKendall, 20, knows first-hand the impact that bone marrow donation can have on a patient. Her mother donated bone marrow twice to her uncle to help him fight leukemia. While Kendall’s uncle did not survive, she was struck by the hope bone marrow donation gave her family. When she was old enough, Kendall joined the Be The Match Registry as a potential bone marrow donor in memory of her uncle.

Several months after joining the registry, she learned that she was a match for a young African American girl with sickle cell anemia. In late 2013, Kendall donated peripheral blood stem cells through a non-surgical, outpatient procedure. She was back to work within two days of her donation.

“I think that bone marrow donation sounds like it might be a hard process to go through, but it was actually really simple,” says Kendall.

Kendall has yet to meet her recipient, but already says she would donate again in a heartbeat. “I know she’s young, probably a strong girl, and if she ever needs anything from me in the future, I’ll definitely always be willing to help.”

It’s on you

You could be the cure for someone with a disease like sickle cell anemia or a blood cancer like leukemia by donating bone marrow.

July is African American Bone Marrow Awareness Month, and Be The Match® is partnering with patient families, like Josh and Vera, and donors, like Kendall, to urge more African Americans to join the Be The Match Registry as committed potential bone marrow donors.

Help save more lives. Get the real facts about bone marrow donation at BTMItsOnYou.org. Take action today.

Know the Facts: Donating Marrow

Posted June 2nd, 2014 by admin and filed in News

College Roommates Justin and Kyle Share Special Bond: PBSC Donation

Posted May 30th, 2014 by admin and filed in News

Justin-and-his-marrow-160x140pxMost college roommates become lifelong friends but, Oucahita Baptist University students Justin and Kyle have one thing in common most roommates do not – they are both peripheral blood stem cell (PBSC) donors.

In September 2011, the young men joined the Be The Match Registry through an effort at their Arkadelphia, Arkansas campus to help a man with a blood disease hopefully find a donor. While the drive raised awareness and registered donors, no match was found and the gentleman passed away.

Although the drive did not produce a match, Justin said attending the event gave him the education and push he needed to make the life-changing decision of joining the Registry. “Giving blood is common,” he said. “I hadn’t considered donating bone marrow for myself because I didn’t know the process.”

After becoming registry members, both men were successful matches. Kyle donated PBSC in the summer of 2012 while Justin got the call that he was a potential match in February 2013. After completing the required blood work, Justin was notified within a week that he was the best match for an international patient from Europe who was suffering from a blood disease.

Upon hearing that he was a match, Justin’s family and friends provided the emotional support he needed as he began the donation process. “A lot of my family was very excited about it,” he said. “Everyone at my school was very supportive, seeing as it was the right thing to do.”

Along with family and friends, Justin said his connection with transplant coordinator Jennifer was a defining part of his donation. “She was awesome,” he said. “She kept up a good relationship.”

For Jennifer, a search and retention specialist with the Scott & White Marrow Donor Program, a donor center that works with Be The Match, working with Justin exemplified what she loves about her career. “The best part of my job is watching these young people rearrange their lives to give a gift to someone that they may never know,” she said.  “Our youth are finding ways to make changes in the world, and our Be The Match Registry fits in so well with how our younger generation can make an impact in the world around us.”

Throughout their partnership, Jennifer said Justin could not have been more dedicated to doing whatever necessary to donate. “He was class president, taking a full load of classes and working a summer job at a camp that required 24/7 availability,” she said. “If he told me he was unavailable for a summer collection, I could understand that. But he didn’t.”

As they neared Justin’s July 2013 collection date, Jennifer said they worked together with the hospital to schedule the needed pre-transplant blood work on weekends to accommodate his schedule. “All of these things ultimately give the gift of life to his patient and created a terrific bond between the two of us,” she said.

With Jennifer’s assistance, Justin said donation was an “absolutely excellent experience.” He donated in Dallas, Texas with his mother and grandmother at his side for the entire six hours. “It is an enriching, enjoyable process,” he said. “The giving process is not painful at all.”

Just as Justin was impacted by donating PBSC, Jennifer said watching him go through the process left her equally inspired. “Personally, I have an 18-year-old,” she said. “If my son becomes as responsible and focused as Justin, I would be so pleased.”