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.

Main Programs

  1. Be The Match Registry: Adding Kansas City Residents as Marrow Volunteers
  2. Greater Kansas City Patient Assistance Program
  3. Center for International Blood and Marrow Transplant Research (CIBMTR)

ruling year

1992

chief executive for fy 2009

Ms. Christine Fleming

Self-reported by organization

Keywords

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

Self-reported by organization

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EIN

41-1704734

Contact

Cause Area (NTEE Code)

Cancer (G30)

Organ and Tissue Bank (E65)

Patient Services - Entertainment, Recreation (E86)

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

For patients with blood cancers like leukemia and lymphoma, and other life-threatening diseases, a cure exists. But 70% of patients do not have a matching marrow donor in their family and depend on the selfless generosity of genetically matched strangers who donate their cells. Be The Match connects patients with their donors and facilitates the transplant process. Thanks to you—our community of marrow donors, volunteers, health care professionals, researchers and financial supporters—more patients every year are finding a match and receiving the life-saving transplant they need. Thanks to your support, we continue to: Facilitate more transplants every yearGrow and manage the world's largest and most diverse donor registrySupport patients and their families before, during and after transplantConduct research and education to expand treatment and improve outcomesEngage the public in our life-saving mission In 2013, Be The Match: Facilitated 6,300 transplants. In Kansas and Missouri, we served more than 170 patients.Added 539,000 potential marrow donors to Be The Match Registry. 237,000 (44%) were racially and ethnically diverse, increasing the likelihood that every patient will find a match. In Kansas and Missouri, nearly 114,000 residents have joined our cause by becoming marrow volunteers.Provided $3.2 million to 1,807 patients to help them cope with out-of-pocket expenses. In Kansas and Missouri, 61 patients received nearly $102,000 in financial assistance.Responded to more than 15,000 requests for one-to-one counseling, financial guidance and support, and educational resources. Our goal is to lower access barriers faced by patients so more lives can be saved: Increase the number of patients who are able to find a matching donor by adding racially and ethnically diverse marrow volunteers to Be The Match Registry.Increase the number of financially vulnerable patients who receive assistance for their uninsured expenses.

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: Adding Kansas City Residents as Marrow Volunteers

70% of patients do not have a donor match in their family. They hope a stranger with their genetic profile - their human leukocyte antigen (HLA) type - has joined Be The Match Registry. We educate and recruit marrow volunteers to increase the likelihood that every patient will find a match. This program focuses on the Kansas City area, giving residents the unique opportunity to personally save a life. HLA is part of our immune system, and defects can lead to blood cancers and other diseases. HLA types are inherited, so patients match someone who shares their racial and ethnic heritage. Matching can be difficult for those with uncommon types. Chances of finding a match range from 93% to 76% depending on the patient's heritage. We will host educational sessions and ""marrow drives"" in Kansas City where individuals fill out a health questionnaire and provide a DNA sample - via a swab to collect cheek cells - to determine their HLA type. With the public's help, we can save more lives.

Category

Diseases, Disorders & Medical Disciplines, General/Other

Budget

Population Served

Other Named Groups

Program 2

Greater Kansas City Patient Assistance Program

Out-of-pocket costs during treatment are formidable. Our assistance helps families to cope and focus on what matters most - healing. 1. Access Grants - Medicaid, Medicare, and private insurance often deny, limit or delay covering the costs of testing potential donors. Patients cannot wait. Our access grants enable physicians to search immediately for the best match. 2. Recovery Grants - Patients must stay in the hospital and within an acceptable distance for at least 100 days, with total treatment lasting 3-6 months. 45% must relocate away from home, and they must be accompanied by a full-time caregiver. Depending on who is sick and who acts as caregiver, up to two incomes may be lost while expenses increase: Lodging - Renting a room or small apartment near the hospital for 3-6 monthsFood - Caregivers eat regularly at the hospitalTransportation - Daily/weekly trips to the hospital for ongoing careCo-pays - Patients take up to 20 prescriptions simultaneously

Category

Health Care, General/Other

Budget

Population Served

Other Named Groups

Program 3

Center for International Blood and Marrow Transplant Research (CIBMTR)

Be The Match is a global leader advancing transplant science through our Center for International Blood and Marrow Transplant Research (CIBMTR). The CIBMTR is the most comprehensive research partnership in the world, with over 400 centers reporting outcomes and participating in studies and trials. Assets include scientific and statistical expertise, a global network, and a clinical database of 350,000 transplant recipients. 1,600 investigators serve on 19 scientific committees: 1. Acute Leukemia2. Infection & Immune Reconstitution3. Autoimmune Diseases4. International Studies5. Cellular Therapies6. Late Effects & Quality of Life7. Chronic Leukemia8. Lymphoma9. Donor Health & Safety10. Non-Malignant Marrow Disorders11. Graft Sources & Manipulation12. Pediatric Cancer13. Graft-Vs.-Host Disease14. Plasma Cell Disorders15. Health Policy & Psychosocial Issues16. Regimen-Related Toxicity & Supportive Care17. Immunobiology 18. Solid Tumors19. Immune Deficiencies/Inborn Errors of Metabolism

Category

Medical Research, General/Other

Budget

Population Served

Other Named Groups

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?
    Doctors and researchers continue to discover that marrow transplant is a viable treatment option for more diseases and more patients. And Be The Match is leading the way to make sure every patient has a clear path to this potential cure.

    With your help, we will continue to:
    *Grow and diversify the registry
    *Advance transplant research
    *Improve access to treatment

    We are also increasing our network’s capacity to help more patients. We are working with the best medical and scientific institutions in the world to speed search and selection of the best cell source for every patient. We are working to support hospital administrators as they expand their transplant programs and reaching out to medical students to consider transplantation as a career.

    Your continued support of our mission is vital. Patients and their families are counting on us.
  2. What are the organization's key strategies for making this happen?
    Not available.
  3. What are the organization's capabilities for doing this?
    Not available.
  4. How will they know if they are making progress?
    Not available.
  5. What have and haven't they accomplished so far?
    Not available.

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

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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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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 and website
  • Forms 990 for 2014, 2013 and 2012
  • Board Chair and Board Members
  • Access to the GuideStar Knowledge Base Search
Need the ability to download nonprofit data and more advanced search options? Consider a Premium or Pro Search subscription.

CHIEF EXECUTIVE FOR FISCAL YEAR

Ms. Christine Fleming

BIO

Ms. Christine Fleming has been in political, academic, and scientific fundraising for twenty-five years. Prior to joining Be The Match Foundation, she served as Vice President of the TGen Foundation, raising funds for a non-profit bio medical research institute called the Translational Genomics Research Institute. She helped design and develop programs in major gifts, planned giving, corporate and foundation relations, annual fund, memorial giving and a volunteer program. As part of TGen's National Advisory Council, volunteers across the country raise funds to support translational research in cancer, neurologic and metabolic diseases. Prior to TGen, she ran the Business School Foundation at The University of Texas (UT), building programs and infrastructure in preparation for the University's $1B Capital Campaign. She also served as the Assistant Dean of Development at UT's College of Natural Sciences, where she assisted them in reaching and then doubling their $160 million campaign goal.

Governance

BOARD CHAIR

Jiro Okochi

CEO & Co-Founder, Reval

Term: Mar 2011 - Sept 2017

BOARD LEADERSHIP PRACTICES

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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?


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CEO OVERSIGHT

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


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ETHICS & TRANSPARENCY

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


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BOARD COMPOSITION

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


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

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