Volunteer Spotlight: Justin and Kristin Akin

Posted April 16th, 2018 by Be The Match and filed in Volunteer Stories
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For Kristin and Justin Akin, being a volunteer Be The Match® courier lets them not only act as a bridge between patient and donor, but also allows them to honor the memory of their two sons, Matthew and Andrew.

The Akin family

In September 2007, three-month-old Andrew was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) and needed a marrow transplant. Kristin and Justin had their oldest son, Matthew, tested to see if he would be a suitable match, but he was not.The Akin’s turned to Be The Match to find an unrelated donor. Unfortunately, there was not a suitable adult match for Andrew on the Be The Match Registry®, but there was a cord blood match.

At six-months-old, Andrew received his first transplant.

Sadly, two months after his transplant, Andrew relapsed. His doctors once again searched the registry. Kristin and Justin were elated that this time there was an adult match. Andrew had his second transplant, just before his first birthday.

“I vividly remember being in the hospital and the coordinator walked into our room, letting us know that the blood stem cells had safely landed,” said Justin.

Shortly after the transplant, doctors informed the family that once again, it was not successful.

Kristin and Justin had their older son, Matthew, further tested, fearing he may have held the mutation as well.

The results were unimaginable.

Matthew, while healthy, also carried the HLH mutation and would eventually get the disease. Kristin and Justin found themselves in an unthinkable situation. Andrew was preparing for his third transplant and Matthew for his first.

Tragically, Andrew passed away in September 2009 at the age of 2. Matthew passed away months later in May 2010 at the age of 5.

Filled with grief, Kristin and Justin channeled their energy into helping others. They became volunteer couriers so they can help other families.

“Every time I go on a trip, it conjures up a lot of emotion,” Kristin said. “People ask me, ‘Why do you want to do this?’ I tell them Be The Match gave us hope. I am eternally grateful to Be The Match for trying to save my children’s lives.”

Super Star Advocate: Becky Tombleson

Posted February 20th, 2018 by Be The Match and filed in Volunteer Stories
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“Advocacy and policy is daunting, but not impossible and I’m buoyed by the sense that I can make a lasting impact in laws and policies that effect patients and their access to care.”

Becky, legislative advocate

Becky Tombleson is a clinical pharmacist with over eight years of experience at Moffitt Cancer Center in Florida and has worked in the Blood and Marrow Transplantation program for most of those. Becky got involved with the National Marrow Donor Program® (NMDP)/Be The Match® because, “as the years go by, one thing remains critical to my patients and their outcomes: access to care. That care takes on many shapes as a prescription that gets denied or a transplant that gets delayed. I have become passionate about access to care watching our patients struggle with financial burdens that complicate their lives and inhibit their outcomes. Our patients are fortunate to have vocal advocates and allies in NMDP and Be The Match.”

Last year Becky traveled with the American Society of Blood and Marrow Transplantation (ASBMT) and the NMDP in an effort to garner support from our lawmakers in Washington for the Protect Access to Cellular Transplant (PACT) Act, HR 4215. When asked about her experience and advice for new advocates, she said, “at first, I was very intimidated! I like to follow policy in Washington closely and as much as I tried to calm myself down, our lawmakers still seem like celebrities to me. Once I was able to visit with a few, I realized I was able to play an important role in their education and how much of an impact that makes on our patients. Our lawmakers are very educated in a number of ways but lack the insight I have as a clinical pharmacist – I found them grateful to learn of the impact access to care has on our patient’s lives.”

Becky is passionate about policy change because, “as time has progressed, I see advocacy and policy as a way to reach out beyond my institution, to patients I will never meet, and hopefully make the process an easier one for them. There are so many ways to impact patient care and I think my focuses have just gone a bit broader than before.”

Many people have never met a lawmaker before, but don’t worry because Becky has great advice. “Think through what you want to say and what is likely to leave a lawmaker with the clearest sense of what you do, what the patient need is, and how the legislation you’re discussing can make that a reality. Our lawmakers care about the interests of their constituents and want ultimately, something that will be beneficial to their lives. Our lawmakers are also involved in many different initiatives and bone marrow transplant is a complicated issue that many people don’t understand that lack experience with it. Also, try to stay calm if you’re easily dazzled by some lawmakers like I was!”

Becky also took the time to get others involved. “I was very fortunate to collaborate at Moffitt Cancer Center with our Federal Legislative Affairs Director. We were able to discuss in detail the PACT Act and how it could not only benefit our patients, but others as well. We both agreed that our institution sets a high standard in caring for patients that depend on access to transplant and that should be communicated to our lawmakers. We were thrilled to see the support we had and the impact that has had on the PACT Act. As one of the most nationally renowned cancer centers in America, we knew a letter of support or call could make all the difference.” And it did. Within a week Becky and her efforts added two co-sponsors!

You too can be a super star like Becky! If you want more information on how you can be a volunteer leader and super advocate, email Jess Knutson.

Volunteer Spotlight: Marcia Diefendorff

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

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

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

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

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

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

College student highlights benefits of service internships through Be The Match®, calls for more students to try the experience.

Posted April 3rd, 2017 by Be The Match and filed in News
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When looking for an internship in college, many students find the process stressful. While paid internships may seem more desirable to students, service internships have the appeal of gaining broad experience while earning school credit. For Alicia Reibling, upon learning about service internships through Be The Match, the experience she would gain was the biggest advantage to accepting a position.

Alicia

Alicia, Be The Match Service Intern

Alicia began her service internship at the start of Summer 2016. As she was finishing her junior year at Bethel University, Alicia wanted to gain a broad experience in human resources. She identified early on the positives of doing a service internship, but also acknowledged the potential financial hardship.

“Balancing time and money were hard, but the long-term benefit of this service internship is already outweighing the short-term financial gain of simply having a summer job or a paid internship that offers less flexibility,” Alicia says.

Now a senior majoring in Human Resources, Alicia was looking to learn about the various aspects of human resources – hiring, benefits, workplace functionality, and others. Instead of accepting an internship focused on one area within that department, she decided to take a service internship with Be The Match – one that offered her the flexibility to learn about human resources as a whole instead of just one aspect of it.

“I think that the biggest benefit of completing this service internship has been the experience in such a wide variety of areas as well as the connections I’ve made. People at Be The Match are so passionate about the mission and are so thankful for the time service interns spend at the office. I felt like I was learning a ton while also giving back,” Alicia recalls.

Service internships at Be The Match

Be The Match has a variety of service internships available at the Coordinating Center located in the North Loop area of Minneapolis. Internships are offered in a variety of departments and can be offered for school credit. Each internship is different based on the intern, and many can be molded to fit your personal career and experience interests.

“Be The Match gives you a chance to work for a purpose. You get your foot in the door at a great organization, which is important for the future,” Alicia says.

Interested in being a service intern? Explore those opportunities online.

In honor of the 2017 Martin Luther King, Jr. Day of Service, we honor super-volunteer Karen Milne, who dedicates her time and expertise to Be The Match®.

Posted January 13th, 2017 by Be The Match and filed in News
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Typically, when someone considers volunteering their time, they align with an organization or cause that has personally impacted their life. For Be The Match skills-based volunteer Karen Milne, the opposite scenario occurred – with no prior connection to the mission, she started volunteering her time and talents to Be The Match, and has impacted the organization and our employees in ways we couldn’t have imagined.

It all began when Karen retired from her career of 31 years as a legal assistant in a downtown law firm and knew that she wanted to spend her days volunteering in some capacity. Looking for opportunities to help, she thought of the NMDP/Be The Match as her firm had represented both for a few years. Mutual friends between her previous employer and Be The Match Foundation led to a phone call and quick realization that Karen would be a perfect volunteer for the annual Be The Match Gala. With experience in planning large events and campaigns, what started out as an intent to sporadically volunteer in her free time has led to an annual four-month commitment to organizing the Be The Match Gala Auction.

Working to help the present and future

Karen (second to the left), with the 2016 Be The Match Foundation service interns.

Karen (second to the left), with the 2016 Be The Match Foundation service interns.

Since 2013, Karen has given over 580 hours of her time to helping organize not only the Annual Gala’s auction, but also to mentor Be The Match Foundation service interns. Often referred to as “The Great Connector” among Foundation employees, Karen is able to lead the service intern team over the summer in assisting with the upcoming Gala, and connect their work with that of the core Foundation team. Her leadership has allowed the service interns to thrive, and gain valuable experience each summer in their work with the Foundation.

“By example, my parents taught me to always give back. This is a meaningful way to fulfill giving back. There is an anonymous quote that says, ‘A person’s most valuable asset is not a head full of knowledge; but a heart full of love, an ear ready to listen and a hand willing to help others.’ I want to always be that person and Be The Match helps me do that,” Karen says.

The Exception to the Rule

A typical volunteer for Be The Match gives approximately 17 hours per year, ranging in positions from in-person registration volunteers, event-day volunteers, and volunteers like Karen – who help with event preparation. Each year, Be The Match Foundation looks for volunteers they refer to as “Go Getters” to work on the annual gala. Being a “Go Getter” is more of a state of mind than anything. They are motivated individuals who go out of their way to make an impact on the service they’re offering.

While Karen technically volunteers as a “Go Getter”, her contribution of time and expertise goes far beyond the expectations of the role – she is the epitome of “the exception to the rule”. While she knows that she is in no way obligated to help out as much as she does, Karen still spends hours each year dedicated to the Be The Match mission – which includes spreading awareness. Her contributions are irreplaceable, and appreciated more than she knows.

Want to get involved too?

If you’re looking for ways to support Be The Match, volunteering for an event like the annual Be The Match Gala may be perfect for you! If you’re in the Twin Cities area, check out our Gala Volunteers page. You can also visit BeTheMatchVolunteer.org for information on other opportunities.

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.