Volunteer Spotlight: Marcia Diefendorff

Show Content

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.

A Life-Saving Talley

Posted November 15th, 2016 by Be The Match and filed in Donor Stories, News, Patient Stories
Show Content

37 seasons. 256 wins. One national championship. More than 70,000 potential lives saved. These are just a few accomplishments of Andy Talley, former head football coach of the Villanova Wildcats. Talley retired from coaching following the 2016 season, but his commitment to saving the lives of those suffering from blood cancer continues long after he walked off the field for the last time.

Answering the Call

In 1992, Talley was listening to the radio when he heard a fact that would change his life: Every three minutes, someone is diagnosed with a blood cancer, like leukemia or lymphoma. For tens of thousands of these patients a bone marrow or umbilical cord blood transplant could be their cure – yet only half receive the potentially life-saving transplant they need.

“When I heard the devastating odds of those in need of a transplant, I immediately knew that I had to do something,” Talley said. “With 90 young healthy football players on my team and the power of collegiate football behind me, I knew I could recruit donors and hopefully make an impact.”

Coach Talley at presenting Be The Match with a $125,000 check

Coach Talley presenting Be The Match with a $125,000 check

Recognizing that his young and healthy football players had the potential to become marrow donors, and use their clout on campus to recruit others to join, Talley set out to educate his players and the community about the opportunity to save the life of a stranger by joining the Be The Match Registry®.

A Team of Ideal Donors

Talley had an important audience on his team. 18-24 year old males are the ideal bone marrow donors. In general, the younger a person is, the healthier their marrow and because men tend to have more body mass than women, they have more marrow to give.

Additionally, since patients in need of a transplant are more likely to match someone who shares their ethnic ancestry, the diversity of his team played an important role, too. Currently, African American patients have the lowest odds of finding a match compared to all other populations and make up only 6 percent of the registry, a fact that stunned Talley.

Beyond recruiting his players to join the registry, Talley began hosting donor registry drives on the Villanova campus and raising funds to cover the costs of tissue typing. At every drive, Talley emphasized how easy it is to join the registry and potentially save a life—all it takes is a swab of cheek cells; no blood is drawn. In 2008, Be The Match® approached Talley with the idea of working together to expand his on-campus drive efforts and the “Get in the Game. Save a Life” (GITG) initiative was born.

Spreading the Word

Since then, more than 75 other college football programs have enlisted to participate in GITG, which has led to nearly 71,000 new registry members, more than 300 of whom have matched with and donated to a patient in need.  One of these donors is Chicago Cub and former Villanova football and baseball star, Matt Szczur, whose donation story was recently featured by ESPN.

“Coach Talley gave me the opportunity to save someone’s life,” Szczur said. “What’s more motivating than that?”

In addition to his involvement with the GITG initiative, Talley also runs The Andy Talley Bone Marrow Foundation which has donated more than $375,000 to assist with covering the costs of adding new members to the registry.

The Commitment Continues

It’s important to Coach Talley that his mission of getting more committed donors on the registry doesn’t retire when he does. His successor, Assistant Coach Mike Ferrante, sits on The Board of Directors of The Andy Talley Bone Marrow Foundation, and he will continue to share the message that anyone can save a life. And Talley plans to deepen his involvement supporting this worthy cause after his final season with the Wildcats.

“With a lot more time on my hands, I am looking forward to increasing awareness and recruiting a ton of coaches to join our Get in the Game initiative,” said Talley. “It is my dream to have every college football team nationwide host a drive and join our passion of saving lives.”

To join the registry visit Join.BeTheMatch.org/GetInTheGame2017

Winning the Lottery of Life

Posted November 5th, 2013 by Be The Match and filed in Patient Stories
Show Content

Z with caption

Alyssa L. fell madly in love with a boy from work – and then she adopted him.

About six years ago, Alyssa, a medical social worker, started working at a residential facility for seriously ill children without homes. There she encountered a sick little boy who now goes by the name of “Z.”

Not yet two years old, the toddler was languishing in the facility as he awaited a bone marrow transplant. Z suffered from Langerhans cell histiocytosis (LCH), a rare blood disorder that affects children. In his short life, he’d already lived through a lifetime of hardship – and was utterly alone in the world. His fragile immune system required him to be isolated from other children in the facility, but he could hear them playing.

During her shifts there self evident Alyssa spent as much time as she could with Z while providing care to 11 other ill children, including tiny premature

babies. She recalls the days just before and during his transplant as the most difficult. “That’s when I really got to know him,” she says. “And when they asked me to sit with him in the hospital during his transplant process, I absolutely fell in love with him.”

The little boy’s recovery was slow and challenging, but Alyssa was a constant presence. One night in the hospital, he developed a very high fever. “I sat with him as he shivered and sweated, watching Elmo on TV, and I really believed he was going to die—but I prayed that he wouldn’t,” recalls Alyssa. Although she tried to hide her despair, one of her tears fell on Z in his hospital bed—and the little boy reached out to comfort her.

Little by little, Z grew stronger. As Alyssa witnessed his progress and spirit, her love for the little boy deepened. When Z turned 5, the family decided to adopt him. They welcomed him to his first real home with their whole hearts.

The new family of three celebrated their first Christmas together with the usual treats and traditions—and all of it was new to Z. “We discovered he’d never even heard of Santa,” says Alyssa. “My husband and I were like kids on Christmas morning—we were just so excited for him that we had to wake him up!”

Today, to the family’s relief, Z is a healthy, happy and sometimes sassy 8-year-old boy. “He went from such a dark place to being so funny, smart and well-adjusted,” says Alyssa. “And he’s proud to be the fastest player on his soccer team!” He’s also a proud big brother to the family’s newest addition: Jack, age 2.

At his 6th birthday party, Z received a special gift: a chance to meet his marrow donor. “She’s an EMT and just a wonderful person,” says Alyssa. “And Z understood what he gave her—he says, ‘She gave me the good blood.’”

With two healthy sons, every day is a little like Christmas to the family. Z loves making pumpkin bread for the holidays and learning about all their family traditions.

“We’re just so grateful to Z’s donor, and to Be The Match for finding her,” says Alyssa. “There are so many ways to give, but giving to an organization like Be The Match is concentrated good. It’s a chance to help so many children and families win the lottery of life – like we did. And now we have the child of our dreams.”

You have the power to give a child the gift of life. Learn more.

Be The Match Celebrates Robin Roberts’ one year birthday

Posted October 11th, 2013 by Be The Match and filed in News, Patient Stories
Show Content

Robin-Roberts-203pxIn September of 2012, Robin Roberts, anchor of Good Morning America, underwent a bone marrow transplant to treat her myelodysplastic syndromes (MDS). Robin was lucky enough to find a marrow match in her sister, Sally-Ann. Realizing that there are many more people who need a transplant, but do not have a match in their families, Robin helped educate the public about Be The Match and the importance of joining the Be The Match Marrow Registry®. Robin is now lending her voice once again in support of Be The Match®.

On September 20, 2013, in celebration of her one-year birthday, Robin debuted a new public service announcement (PSA) for Be The Match on Good Morning America. Be The Match and Robin have also partnered on advertisements to spread the word about Be The Match. Robin’s ads can currently be seen on public transportation systems in major cities such as New York, Atlanta, Chicago, Los Angeles and Philadelphia as well as online. In addition, Robin and Be The Match are launching a campaign landing page that the public can use to find more information about joining the Be The Match Registry and to view Robin’s Be The Match PSAs.

To thank and honor Robin for all of the valuable support she’s given Be The Match, The Be The Match Foundation presented Robin with the Rod Carew Award at the Minneapolis Tribute event on Saturday, September 21. This award is given annually to a person or organization for making a profound difference in the lives of patients and their families through their leadership and commitment to the Be The Match mission. Robin has been described as a “cancer thriver.” She has made a significant difference by sharing her transplant story with the world. Be The Match is proud to recognize Robin for her extraordinary accomplishments in the past year:

  • Inspiring more than 65,000 people to join the Be The Match Registry
  • Motivating more than 325,000 fans to wear the Robin Roberts’ Prayer for Protection wristband raising awareness for Be The Match
  • Generating a national conversation about Be The Match and the need for unrelated marrow donors

For the latest information on Be The Match’s partnership with Robin Roberts, check out BeTheMatch.org.

Abby’s Donation Story

Posted October 8th, 2013 by Be The Match and filed in Donor Stories
Show Content

Abby-203pxAbby first learned about Be The Match® at work in 2011 through her boss. She was asking others to register for a friend who had been diagnosed with leukemia. Wanting to help, Abby joined the Be The Match Registry®. Unfortunately, she was not a match for her boss’ friend, but just three months later, she got a call telling her that she was matched to a 15-year-old boy in California. Abby donated marrow, extracted from the pelvic bone through an outpatient surgical procedure, to her recipient six months later and describes her journey as “the best experience ever!”

How did friends and family react?

Abby felt a mix of emotions when she told friends and family she was going to donate marrow. Although her loved ones were excited about her decision, they were also nervous and scared. They had many questions to be answered, and they wanted to make sure that the procedure would be safe for her.

Abby educated her husband and two children about the procedure in hopes that they would understand how determined she was to help. She was able to ease their fears, along with those of her friends and family, and their support became a crucial factor to the success of her donation.

Abby’s donation journey

Abby had one main worry when going through with donation. “My main concern was, ‘will I have enough marrow?!’” said Abby. Being very petite, she was afraid that her body would not be able to give enough marrow to help cure her recipient. Abby’s donor center, doctors, and loved ones all reassured her that everything would go well, and her procedure was a complete success! “The doctors, nurses, and Be The Match always answered any questions and or concerns I had,” said Abby.

After donation, Abby experienced some side effects. These side effects consisted of nausea, pain, fatigue and weakness. However, they did not last long and Abby was shortly back to her regular routine. Looking back on her experience, Abby explains that she did not realize how much the donation would change her.

Connections with Abby’s recipient

Recently, Abby was able to get in contact with her recipients mother*. They talked for more than two hours, sharing each other’s journey, what their lives are like now, and learning more about one another’s family. Abby was also able to hear the great news, first hand, that her recipient is now 95% recovered and is doing extremely well. Both families are looking forward to meeting in the future, and share a connection that cannot be replaced. “Emotionally, it was an amazing experience. I was left with a great feeling inside of me that will last a lifetime.”

Note:

*A donor and patient may exchange contact information if the patient’s transplant center rules allow, it has been at least one year since transplant, and both donor and patient consent.

Support for your child’s education needs through the transplant journey

Posted July 31st, 2012 by Be The Match and filed in Patient Stories
Show Content

If you are the parent of a young transplant recipient, you know there are added challenges for your child to succeed in school and keep up with their peers. But did you know that your child has rights to receive extra support and resources that fit how he or she is able to learn? A mother and an expert in the field tell you how.

Hospital teacher Sarah Steinke, M.Ed., M.A., at Cincinnati Children’s Hospital Medical Center answers questions that she has received from parents of pediatric transplant patients about Individualized Education Programs (IEP) and 504 plans.

What is an Individualized Education Program (IEP) and how can it help my child?

Because of your child’s transplant, they meet the definition of having a medical disability that affects their ability to attend school and complete schoolwork like their peers. This makes your child eligible for an IEP. An IEP is an individualized education plan based on your child’s strengths and needs. A team including you and your child’s teacher will make annual educational goals for your child and plans for measuring these goals. Your child’s school will also need a written plan in the form of an IEP that states his/her needs for a different learning environment, such as a hospital school or homebound instruction – where teachers or tutors come to the child’s home.

What is a 504 plan and how can it help my child?
A 504 plan is based on civil rights law (Section 504 of the Rehabilitation Act of 1973) that provides an opportunity for equal access to education. It protects against discrimination because of a mental or physical disability and allows for reasonable accommodations. Children undergoing a bone marrow transplant will miss a significant amount of school that will make it difficult to keep up with school work.  Examples of accommodations a 504 plan can provide to your child include extra time on tests and assignments, a copy of notes, preferential seating, an extra set of textbooks at home and extra bathroom breaks. The process for eligibility does not require a formal request, but you need to work with the child’s school to make their needs known. 

An IEP and 504 plan sound similar. How do I decide which is right for my child?
If small adjustments will provide enough support for your child to succeed in school, a 504 plan is a good option.  For example, if your child is able to do well with extra time on tests, copies of notes from the teacher, an extra set of books at home to avoid carrying a heavy load, and any other accommodations his/her school will provide, then your child does not need an IEP. If your child has trouble keeping track of assignments or taking notes, gets overwhelmed often and his/her grades are suffering, then your child would benefit from an IEP. Private schools do not have to provide or follow IEPs or 504 plans unless they receive federal funding.  However, many private schools will meet the needs of your child by offering similar plans. In college, special accommodations are arranged through the disability services office.

If my child needs an IEP, what are the first steps?
A parent can request that their child be evaluated for special services at any time.  It is best to put this request in writing to a school administrator (you can also deliver it in person).   After you have made a formal request, the school will respond. Then, a school psychologist will make an assessment. After that, the IEP meeting takes place with you and the IEP team and the school will determine if your child is eligible for an IEP. 

Where can I go for help? 
Many hospitals have programs that can help with school communication and re-entry needs and are resources for parents and students needing either an IEP or 504 plan. 

Joe transplant recipientJoe’s story
Joan talks about her son Joe’s experience and how the extra academic support and resources of an IEP plan helped him succeed.

Following transplant, my son Joe had low energy and suffered from fatigue.  He could not focus for long periods of time and needed to build up his physical strength. Also, his immune system was compromised and he had to go into the BMT clinic frequently for doctor appointments.

Joe had homebound instruction during the second half of 9th grade and an IEP for 10th grade. For his IEP, Joe was provided longer times on tests, extended deadlines for completing assignments, and shortened homework assignments as mastery was shown. He could also listen to books on tape. He could leave class five minutes early so he didn’t get bumped in the hallway and so he had enough time to get to his locker and the next class.  Joe was able to do his physical education requirements through a home activity log since he wouldn’t be able to keep up in a regular gym class.  He also took an independent study class to meet a graduation requirement.

Joe graduated from high school on time and has since graduated from St. John’s University with a degree in Business Management in May 2012.  In June he landed his first full time position with a marketing company in the Twin Cities.

My advice is to ask the school about any special services that may be available. Be persistent and be frank about what your child is struggling with. The letter from our BMT doctor was more than a page long and it really communicated how long and difficult the recovery can be.  This gave credence to what we were telling them.

For additional resources, check out:
Be The Match

Organ donation and Facebook’s Life Event

Show Content

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

Show Content

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.

Milestones celebrated on Capitol Hill

Show Content

The U.S. Congress plays a vital role in supporting our life-saving mission. To recognize our partnership with the federal government, the National Marrow Donor Program® (NMDP) hosted a celebration on Capitol Hill January 21st to mark 40,000 transplants facilitated by the NMDP and 8 million members on the Be The Match Registry®.

Celebration and education
The milestone celebration brought together members of Congress and their staff with transplant recipients, marrow donors and NMDP staff. The event was also an opportunity to educate members of Congress and their staff about the need to increase the number of unrelated donor transplants in the United States and to improve transplant outcomes.

Congress’ support of transplant
In 2005, the U.S. Congress passed the Stem Cell Research and Therapeutics Act establishing the C.W. Bill Young Cell Transplantation Program. As a contractor for this program, the NMDP works to grow and diversify the national marrow and umbilical cord blood registry and ensure more patients have access to transplant.

The Stem Cell Research Act will expire at the end of 2010 and must be renewed this year. In addition, the funding for the C.W. Bill Young Cell Transplantation Program must be appropriated by Congress annually.

Be The Match Awareness Continues to Grow

Posted February 2nd, 2010 by Be The Match and filed in Donor Stories
Show Content

What do Los Angeles, Atlanta, Houston, Minneapolis and Charlotte have in common? This spring, Be The Match® ads will begin appearing in those metro areas.

If you see one of our ads, be sure to tell your friends that YOU are part of Be The Match –- and why they should be, too.

A successful first year for our new name
We introduced Be The Match as the new name of our life-saving mission, the donor registry and our foundation in April 2009. We began our campaign to get the word out with ads on television, radio and billboards in just two cities: Charlotte and Houston. Through surveys, we learned our Be The Match ads made a strong impression. People remembered the name and remembered what it meant — the opportunity to save a life through marrow donation. So this year, we’re aiming to build on our success by expanding our campaign.

Reaching more cities this spring
This spring we’ll be promoting Be The Match with ads in Charlotte, Houston, Los Angeles, Atlanta and the Minneapolis/St. Paul metro areas. Ads will run on TV, radio, billboards, newspapers and movie screens. We’ll also be launching new public service announcements to 10 additional cities.

What about the rest of the country?
Why not run ads nationwide? Many television and other media outlets have kindly agreed to support our cause by giving us extra air time and advertising space, but advertising is still expensive. Our challenge is to reach people effectively, while carefully managing costs.

One way we are reaching people nationwide is through our growing Be The Match communities in social networking spaces like Facebook and Twitter. Supporters like you have been a big part of growing these communities –- thank you!

Find us on:

FacebookIconTwitterIconLinkedIniconYoutubeIconFlickricon