Ed Plass and his impact with Be The Match

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In December of 2011, at the age of 68, Ed underwent an unrelated cord blood transplant to treat acute myelogenous leukemia, a life-threatening blood cancer.  Transplant is a rigorous treatment that requires a lengthy hospital stay and months to years of recovery.  As a survivor of this intensely difficult treatment, he has dedicated much of his life to helping others going through the same process. Ed’s wife Kate was his primary caregiver and a huge part of his transplant and recovery. She has stood by his side throughout this journey, and has also dedicated much of her time to advocating for Be The Match with Ed. “Our oldest grandchild was 6 years old and the youngest was just 9 months when I had my transplant,” commented Ed. “I’ve been able watch them grow up and they’ve had the chance to know their grandfather as a person, not a picture.” Many of Ed’s experiences with transplant, recovery, and advocacy has been a family effort.

Ed is part of the Be The Match peer to peer counseling program for transplant patients, helps edit educational and support material, was on the Leadership Council for several years, helping with legislative advocacy, donor recruitment and tabling events. He speaks to other patients who are anticipating transplant about his own experience and helps ease their fears, answer their questions and provide the kind of encouragement that only a survivor can give. His wife Kate has also spoken at these events from a caregiver’s perspective. He meets with social workers and other staff members to ensure that they know how best to support patients going through the same treatment that he did. It is difficult to explain the impact that Ed makes on the patients who look to him for support, except to say that in this volunteer role he uses himself and his experience with transplant to connect with people who desperately need support.

Ed says his transplant has given him the gift of life and the gift of time. And he’s making the most of it. In addition to spending time with family, he is very active in his church and has volunteered over 400 hours with Be The Match: connecting with patients, transplant centers and legislators. He and his wife have been very generous with financial gifts to Be The Match as well, as they understand that supporting patient assistance, recruitment and research is so important.  “After my transplant, I’m more aware of the issues which people [like me] can face, and I’m trying to give back,” said Ed.

We need more people to make an impact like Ed, and support patients like him. You could make an impact by signing up for a monthly gift. A reliable monthly gift will help more patients receive marrow transplants, expand the Be The Match Registry, and provide financial resources to patients and families in need Join us in our life saving mission and give a monthly gift today.

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.

“What is Inspiring?”

Posted December 3rd, 2014 by Be The Match and filed in News
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Five-time Jeopardy! Winner and Be The Match Supporter

wedding-photo-69 (2)Sarah had watched Jeopardy! her whole life. She imagined the day when she would stand under the hot Hollywood lights and amaze people question after question. One thing she never imagined, however, was that her mother wouldn’t be there sharing in Sarah’s moment.

In February 2013, Sarah’s 62 year old mother, Marilyn, received the heartbreaking news that she had acute myeloid leukemia. For months, Marilyn stayed in the hospital receiving chemotherapy. Thankfully, by summer, Marilyn went into remission and was healthy enough to watch her daughter walk down the aisle.

Marilyn’s doctors were planning on pursuing a bone marrow transplant soon after Sarah’s wedding. When no one in Marilyn’s family was a match, her doctors turned to Be The Match Registry and found a volunteer marrow donor.

“Unfortunately, shortly after my honeymoon,” Sarah said, “we found out the cancer was back. We were told she would need more chemo to try to get back into remission before the doctors could do a bone marrow transplant.”  Sadly, Marilyn passed away before she could make it to transplant day.

While Sarah’s mother was unable to receive her marrow transplant, Sarah is grateful for the man who was willing to honor his commitment and help. “Having that person out there, gave us a lot of hope,” she said.

On The Air with Jeopardy!

Just two weeks after her mother’s passing, Sarah’s Jeopardy! dream came true.  During the filming, Sarah made a decision. Her mother may not have been able to watch her compete, but Sarah made sure to keep Marilyn’s spirit with her throughout her five winning appearances. “My mother always wanted to give back,” said Sarah. So, she decided to use Jeopardy! as an opportunity to bring awareness to the organization that brought her family hope – Be The Match.

During her one-on-one interviews with Alex Trebek, Sarah spoke about the importance of joining the Be The Match Registry. As a direct result, she learned that some viewers were so moved that they signed up for the registry. “It’s really gratifying to feel like [my mother] made an impact on others. If I influenced someone else to join, maybe that someone will go on to save a life,” said Sarah.

Sarah has taken the tragic experience of losing her mother and turned it into a chance to prevent more losses like her own. With some of her winnings from her time on Jeopardy!, she plans to help fund donor drives to add more potential donors to the registry.

You can be an advocate like Sarah. Take a minute to learn more about our Action Advocacy Network and then sign up to join.

Meet An Advocate: Betsy Lucas, Minneapolis, MN

Posted December 6th, 2012 by Be The Match and filed in Patient Stories
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Three months to live. Betsy Lucas received that devastating deadline when doctors diagnosed her with leukemia in 2005. But Betsy, a schoolteacher and mother of two, had hope: if her doctors could quickly find a matching bone marrow donor, a transplant would offer her a second chance at life.

Hope became reality with the help of a German teenager. Through Be The Match®, Tobias Hoffman, 19, was identified as a bone marrow match for Betsy. That’s because Be The Match® partners with other international registries to give patients access to approximately 19 million donors and nearly 600,000 umbilical cord blood units worldwide. 

Betsy received her transplant at the University of Minnesota in 2005, and has been cancer-free ever since.

Today, Betsy is healthy and leading an active life with her husband and their young daughters. Still, she hasn’t forgotten about the people who helped her. She had the opportunity to thank Hoffman in person and has reached out to Be The Match to help provide this life-saving gift to others. Betsy has logged hundreds of volunteer hours raising awareness about the importance of bone marrow donation, educating patients and recruiting donors to join the registry.

2012: A Quick Year In Review

Posted December 6th, 2012 by Be The Match and filed in News
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From our Be The Match® Be The VoiceTM E-Newsletter, subscribe now.

2012 was a year of amazing milestones for the National Marrow Donor Program® (NMDP) and Be The Match®.  We celebrated 25 years, facilitated 50,000 transplants for patients with life-threatening blood cancers and reached an astounding 10 million potential volunteer marrow donors on our Be The Match Registry®. These accomplishments are all the more remarkable considering that they come in a year marked by a thoroughly divided Congress and a challenging fiscal climate.  It is fortunate that saving lives is something that is agreed upon on both sides of the aisle!

In February, Senator Pat Toomey(R-PA) paid tribute to the efforts of Be The Match in a statement delivered on the floor of the U.S. Senate.  While encouraging people to join the registry, Sen. Toomey called our work “laudable” and said that “the bone marrow program is a cause close to my family’s heart.”

In May, Representative C.W. Bill Young(R-FL) gave remarks congratulating the NMDP for registering its 10 millionth potential donor on the Be The Match Registry: “Today, Be The Match continues to grow to meet the needs of patients whose best – and often only – hope for a cure is a marrow or cord blood transplant.  Each of the 10,000,000 volunteers, and every additional member of the registry we recruit, represents hope to the thousands of patients who search for a match every year.”  Rep. Young, a long-time champion on the issue, also was honored at the Be The Match Board of Directors meeting in September.

In June, The Department of Justice announced that it would not seek Supreme Court review of the U.S. Ninth Circuit Court’s ruling that certain forms of marrow donation can be compensated.  While the Court’s ruling may not immediately impact they way we operate our all-volunteer registry, it does create some confusion and could ultimately make it more difficult to recruit donors.  We continue to work with Congress to educate them on this matter and ensure that the registry continues to be an operation built on altruism and not profit.

In July, a dedicated group of marrow transplant recipients and donors came to Washington D.C. to participate in our annual Legislative Day.  Together they took part in more than 30 meetings with lawmakers and legislative staffers to advocate for continued Congressional support of Be The Match.  A registry drive held in conjunction with the event turned out to be one of our more successful recent Capitol Hill drives and our advocates even convinced Representative Keith Ellison (D-MN) to join the registry!

In October, the Health Resources and Services Administration (HRSA) again awarded contracts to the NMDP to administer the C.W. Bill Young Cell Transplantation Program.  The renewal of these contracts, along with continued Congressional funding, indicates that Be The Match is on the right track with the federal government!

November brought a contentious election cycle to a close.  President Barack Obama’s reelection coupled with an earlier Supreme Court ruling on the Patient Protection and Affordable Care Act gives more certainty to the upcoming implementation of health care reform.  Be The Match is monitoring the situation carefully, particularly to ensure that marrow and umbilical cord transplantation is covered as an Essential Health Benefit in all state and federal insurance plans.

As we look forward to working with a new Congress in 2013, Be The Match will continue to seek opportunities to maintain and increase public funding and awareness in support of life-saving marrow and cord blood transplantation.

A Welcome From Dr. Chell

Posted December 6th, 2012 by Be The Match and filed in News
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From our Be The Match® Be The VoiceTM Advocacy E-Newsletter, subscribe now.

For 25 years, passionate supporters of the National Marrow Donor Program® (NMDP) and Be The Match® have helped our organization achieve some incredible milestones. With your help, we have facilitated more than 50,000 transplants, and we’ve added more than 10 million people to the national Be The Match Registry®. But, we are still striving toward our ultimate goal: finding a matching donor for every patient in need of an unrelated transplant.

To help achieve this mission, we’ve recently updated our Legislative Relations Advocacy Action Network. It’s full of materials that will help you inspire the continued legislative support that Be The Match needs to save more lives.

You can help shape future policies by simply sharing your personal story with your local legislators, inviting your district’s representatives to local donor registry drives, or involving them in your region’s Be The Match Walk+Run®. We also encourage you to connect with Be The Match and your local legislators through social media channels. These grassroots initiatives are an easy way to help ensure that the NMDP and Be The Match continues to receive much-needed federal funding.

I’m confident that we can achieve our mission of helping all patients in need, knowing that we have such dedicated advocates.

If you have questions about these tools or general questions about the Advocacy Action Center, please contact our advocacy team at legislation@NMDP.org and 202-626-8668.

Sincerely,
Jeffrey W. Chell, M.D.
Chief Executive Officer, NMDP and Be The Match