Disease, Disorders, Medical Disciplines

Be The Match Foundation

  • Minneapolis, MN
  • www.bethematch.org

Mission Statement

Be The Match Foundation supports the life-saving mission of Be The Match/National Marrow Donor Program, ensuring that patients diagnosed with blood cancers such as leukemia and other diseases get the marrow or cord blood transplant they need for a second chance at life. A transplant offers hope for a cure. We connect patients with their genetically matched donors and provide comprehensive support throughout the transplant journey, from diagnosis through recovery, and we conduct medical research to improved outcomes and quality of life for transplant patients. Out patients and donors are primarily in the United States, but many donors and patients served by our mission are based internationally; at locations throughout the globe.

Main Programs

  1. Be The Match Registry
  2. Patient Assistance Program
  3. Center for International Blood and Marrow Transplant Research (CIBMTR)

service areas

International

Self-reported by organization

Areas Served Narrative

Be The Match® is the hub of a global transplant network that connects more than 600 leading centers worldwide, including more than 140 transplant centers in the United States and more than 30 international transplant centers.Our global network counts on our technology, expertise and unparalleled logistical support at every step to make transplants possible.



Self-reported by organization

ruling year

1992

Executive Director, Be The Match/ Senior Vice President of Philanthropy, National Marrow Donor Program since 2016

Joy King

Self-reported by organization

Keywords

Be the Match, bone marrow, transplantation, transplant research, blood cancers, leukemia, patient support, medical education,cellular therpies,

Self-reported by organization

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EIN

41-1704734

 Number

1514869618

Contact

Cause Area (NTEE Code)

Cancer (G30)

Fund Raising and/or Fund Distribution (H12)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Programs + Results

How does this organization make a difference?

Impact statement

Be The Match grows and manages the world's largest and most diverse registry of volunteer marrow donors. In 2015, we added 537,000 new registry members. We have 13.5 million registry members and 225,000 umbilical cord blood units on the Be The Match Registry®, and access to 27 million potential donors and 680,000 umbilical cord blood units worldwide.
In 2015, 41,000 contributors gave nearly $9 million, and volunteers donated 131,000 hours—a value of more than $3 million.
We provide one-on-one support for patients and their families. We offer the resources and guidance they need before, during and after transplant as well as provide patient assistance to help ease the financial burden of uninsured costs associated with treatment. In 2015, we provided $3.4 million in patient assistance to more than 2,000 families.
We conduct research that has already saved and improved lives. In 2015, more than 200 research studies were underway through our research program, CIBMTR®. These studies continue to help more patients get the transplant they need and improve transplant outcomes.
We provide comprehensive information and resources for health care professionals, which helps them provide optimal care for their patients before, during and after transplant.

Programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

Self-reported by organization

Program 1

Be The Match Registry

Be The Match Registry® is dedicated to creating an opportunity for all patients to receive the marrow or umbilical cord blood transplant they need, when they need it. It is the largest and most diverse donor registry in the world. Our partnerships with international and cooperative registries provide doctors with access to nearly 24.5 million potential donors and more than 622,000 cord blood units worldwide.

WE STRIVE TO:
• Increase diversity
• Attract committed donors
• Fundraise to support the mission
• Add more umbilical cord blood units
• Partner with clinicians to provide optimal care

Category

Diseases, Disorders & Medical Disciplines

Budget

Population Served

General Public/Unspecified

General Public/Unspecified

Program 2

Patient Assistance Program

Not everyone can afford the life-saving treatment they need. Costs such as the search for a marrow donor, complex matching, travel and lodging when the transplant center is far from home, prescription co-pays and many other transplant-related costs may not be covered by insurance. Be The Match is dedicated to making transplant possible for all patients – but we can’t do it alone. We rely on generous contributions to help patients receive the transplant they need.

Category

Diseases, Disorders & Medical Disciplines

Budget

Population Served

General Public/Unspecified

General Public/Unspecified

Program 3

Center for International Blood and Marrow Transplant Research (CIBMTR)

Without research focused exclusively on transplant science, medical breakthroughs would not be possible and patients would not receive a second chance at life. Progress has been made, but more research is needed to advance the field of blood and marrow transplantation. We conduct research through our research program, CIBMTR® (Center for International Blood and Marrow Transplant Research®), in collaboration with the Medical College of Wisconsin. What makes our research program unique?

• We focus exclusively on blood and marrow transplant research
• Our research supports patients at every step in their transplant journey, including matching and recovery
• We operate the Stem Cell Therapeutic Outcomes Database: a program authorized by Congress to collect the detailed results of every allogeneic transplant performed in the U.S.
• Our extensive network of research partners includes more than 500 hospitals and research centers worldwide

Category

Medical Research

Budget

Population Served

General Public/Unspecified

Charting Impact

Five powerful questions that require reflection about what really matters - results.

Self-reported by organization

  1. What is the organization aiming to accomplish?
    We are a community of donors, volunteers, health care professionals and researchers who deliver cures by helping patients get the life-saving marrow or cord blood transplant they need. Our passion to save lives drives us to help more patients survive each year. We continually strive to improve access to transplant, to remove barriers to treatment and strengthen our ability to meet the growing need.

  2. What are the organization's key strategies for making this happen?
    A patient's likelihood of finding a matching bone marrow donor or cord blood unit on Be The Match Registry® ranges from 66% to 97%, depending on ethnic background. Adding more members who increase the ethnic diversity of the registry increases the variety of tissue types available. This helps more patients find the match they need.

    Every dollar we raise helps more patients afford transplant, adds potential marrow donors to the registry and funds our life-saving research. We help patients and their families from diagnosis through survivorship. We understand the unique needs of transplant patients, and offer tailored one-on-one support, resources and a variety of services, including financial assistance.
  3. What are the organization's capabilities for doing this?
    Be The Match is the hub of a global transplant network, including partner centers throughout the U.S. and registries
    in 42 countries. We lead efforts in the world-wide transplant community to improve access to care and strengthen our ability to meet the growing need.

    We grow and maintain the world's largest and most diverse donor registry, with 537,000 new potential donors added last year. 50% of new registry members are racially and ethnically diverse, which increases all patients' chances of finding a match. We have 13.5 million registry members and 225,000 umbilical cord blood units on the Be The Match Registry®, and access to 27 million potential donors and 680,000 umbilical cord blood units worldwide.

    With our research partners, we improve outcomes and enrich the quality of life for thousands of patients. We have published more than 800 articles in peer-reviewed medical journals since inception; 76 published last year. More than 350 transplant centers participate in our research. We have more than 390,000 patients in our research database, and are conducting more than 250 active studies. We make available for research HLA samples which are in storage – buccal swabs, frozen aliquots and filter paper. Samples from more than 22,000 donor/recipient pairs are available for use in research studies. More than 1 million stored samples are available for retrospective studies to determine transplant outcomes.

    Be The Match's research improves matching and makes it easier and faster to find the best donor or cord blood unit.

    Our research has also advanced the science that proves that younger donors and improved timing leads to better transplant outcomes.

    Be The Match's research has also led to treatment advances that make transplant a better option for patients 51-75 years of age.

    Be The Match's ongoing education on advances in transplant research, clinical practice and patient care is offered to transplant doctors throughout the world.
  4. How will they know if they are making progress?
    Each year, more young, diverse and available members have joined the Be The Match Registry, we grow the funding available to increase the number of research programs and trials each year and we fulfill the unmet need for patients and their families facing uninsured costs associated with transplant.
  5. What have and haven't they accomplished so far?
    The need for young, diverse registry members still exists. We have recruited millions of people to the Be The Match Registry to help bridge the gap for those unable to find a match in their family, but not all people are able to find a match. Research shows that younger donors provide the best outcomes for patients, and we will continue to recruit young, diverse registry members until all patients in need find their match. Patient assistance grants have helped patients and their families with the uninsured costs of transplant, although the need far exceeds available funding. Ongoing research will continue to advance the science of transplant for years to come. We continue to raise awareness of the need for registry members, research initiatives and financial support.

service areas

International

Self-reported by organization

Areas Served Narrative

Be The Match® is the hub of a global transplant network that connects more than 600 leading centers worldwide, including more than 140 transplant centers in the United States and more than 30 international transplant centers.Our global network counts on our technology, expertise and unparalleled logistical support at every step to make transplants possible.



Self-reported by organization

Blog

The organization's Blog

Social Media

@BeTheMatch

@bethematch

@BeTheMatch

@BeTheMatch

Funding Needs

Sponsor potential marrow donorsPhysicians are 10 times more likely to select younger donors (18-25) to give patients the best chance for a cure. $100 covers genetic testing and adds a young adult to Be The Match Registry.Sponsor a patient family (treatment lasts 3-6 months):$5,000 - Temporary lodging near the hospital$1,000 - Monthly co-pays for prescriptions$500 - Food for caregivers who eat at the hospital$250 - Transportation to ongoing appointmentsFund life-saving research

photos


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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

BE THE MATCH FOUNDATION
Fiscal year: Oct 01-Sep 30
Yes, financials were audited by an independent accountant.

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  • Forms 990 for 2014, 2013 and 2013
  • Board Chair and Board Members
  • Access to the GuideStar Community
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Operations

The people, governance practices, and partners that make the organization tick.

Be The Match Foundation

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2014, 2013 and 2013
  • Board Chair and Board Members
  • Access to the GuideStar Community
Need the ability to download nonprofit data and more advanced search options? Consider a Premium or Pro Search subscription.

Executive Director, Be The Match/ Senior Vice President of Philanthropy, National Marrow Donor Program

Joy King

BIO

Joy King joined Be The Match in 2016 and serves as Senior Vice President of Philanthropy and Executive Director for Be The Match Foundation.

She is responsible for leading the Foundation staff and its Board of Directors to significantly grow revenue to advance the life-saving mission of Be The Match. Revenue raised by the Foundation is used to expand access to cellular therapy, provide support for patients and their families experiencing transplant, and fund life-saving research.

With more than 15 years of experience in development leadership roles, King was most recently the Senior Vice President of Operations, for the Midwest division of the American Cancer Society overseeing 250 staff members with an annual fundraising goal of $32 million.

In this role, she led operations for the division including community engagement, distinguished partners and health systems. King was also recently recognized by Minneapolis-St. Paul Business Journal as a 2015 Women in Business honoree.

Her career began with American Cancer Society as Field Representative for Relay for Life in Texas. She was quickly promoted to Regional Executive Director in Texas and then Regional Vice President for Nebraska, transforming the staff into a high performing successful team. In 2013, she took on the role of Vice President of Community Engagement for the Midwest division.

King holds a Bachelor of Science degree from Tarleton State University.


STATEMENT FROM THE Executive Director, Be The Match/ Senior Vice President of Philanthropy, National Marrow Donor Program

"Every three minutes someone is diagnosed with a blood cancer like leukemia, lymphoma,or other life-threatening disease. And 70 percent of patients do not have a matched marrow donor in their family. They depend on us to find a life-saving match. Thanks to our growing community of financial supporters, marrow donors, volunteers, health care professionals and researchers—more patients are receiving the life-saving marrow or cord blood transplant they need.

Charitable support from individuals, companies, foundations and organizations makes it possible for us to continue to:
• Grow the world's largest and most diverse registry of potential donors
• Support patients and their families before, during and after transplant
• Conduct research and education to expand treatment and improve outcomes
• Engage the public in our life-saving mission"

Governance

BOARD CHAIR

Jiro Okochi

Chief Executive Officer and Co-Founder, Reval

Term: Mar 2011 - Sept 2017

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization

No

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?

Yes

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Yes

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Yes

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Yes

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?