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Be The Match Foundation Name provided directly to GuideStar from organization* as of: 03/16/2015: Be The Match Foundation

Organization Name as listed in the IRS Business Master File as of 03/10/2015: BE THE MATCH FOUNDATION

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Minneapolis, MN
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GuideStar Summary

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&1002; Forms 990 2013, 2012, and 2011 Forms 990 filed with the IRS
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&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

Be The Match Foundation Name provided directly to GuideStar from organization* as of: 03/16/2015: Be The Match Foundation

Organization Name as listed in the IRS Business Master File as of 03/10/2015: BE THE MATCH FOUNDATION

* GuideStar encourages organizations to regularly update information on their GuideStar Nonprofit Profiles. This provides richer and broader information about their programs, impact, finances, people and more.
Physical Address: Minneapolis, MN 55413 
EIN: 41-1704734
Web URL: www.bethematch.org 
NTEE Category: G Disease, Disorders, Medical Disciplines
G30 Cancer
E Health—General & Rehabilitative
E65 Organ and Tissue Bank
E Health—General & Rehabilitative
E86 Patient Services - Entertainment, Recreation
Ruling Year: 1992 


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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.

Legitimacy Information

This organization is registered with the IRS.

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

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Annual Revenue & Expenses

(GuideStar Nonprofit Profile,
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March 2015)

Fiscal Year Starting: October 01, 2013
Fiscal Year Ending: September 30, 2014

Total Revenue --
Total Expenses --

Revenue & Expenses

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
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Forms 990 Provided by the Nonprofit

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Leadership

(GuideStar Nonprofit Profile,
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March 2015)

Ms. Christine Fleming

Term:

Since Jan 2009

Profile:

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.

Board Chair (GuideStar Nonprofit Profile,
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March 2015)

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Board Co-Chair

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Board of Directors (GuideStar Nonprofit Profile,
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Board Leadership Practices (GuideStar Nonprofit Profile,
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March 2015)

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Board Orientation & Education ?
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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 ?
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Has the board conducted a formal, written assessment of the chief executive within the past year?
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Ethics & Transparency ?
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Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
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Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
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Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

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Officers for Fiscal Year (IRS Form 990)

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Programs

Program: Be The Match Registry: Adding Kansas City Residents as Marrow Volunteers (GuideStar Nonprofit Profile
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March 2015)

Budget:
--
Category:
Diseases, Disorders & Medical Disciplines, General/Other
Population Served:
Other Named Groups

Program Description:

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.

Program Long-Term Success:

We aim to recruit healthy, diverse individuals who have been educated about marrow donation and remain committed to helping any patient in need. Long-term, our pool of marrow volunteers must be large and diverse. We review its racial and ethnic composition to identify underrepresented populations, and increase outreach to those communities. For example, African Americans have the lowest chance (76%) of finding a donor, so we increase engagement to add volunteers and improve matching rates.

Program Short-Term Success:

Our mission combines the best of science and medicine with the anonymous generosity representing the best of human charity and spirit. Patients rely on the altruistic spirit of ordinary men and women who are deeply inspired by the unique opportunity to ""be the match"" and save a life. To be successful, we recruit healthy individuals who are well educated about marrow donation and remain committed to helping any patient. In surveys, we ask volunteers: * Questions to gauge their understanding of the donation process * To rate their level of commitment * To rate their satisfaction and provide feedback About 1 in 500 is identified as a potential match and asked to come in for further screening. Patients depend on these Be The Match Registry members to step forward when called, so success means that they remain ""available"" when matched with a patient. To ensure members remain educated and inspired, they receive ongoing communications, and are asked to renew their commitment each year.

Program Success Monitored by:

We have two main measures for success: 1) the availability rate of our marrow volunteers, and 2) the percentage of patients who find a donor match. When performing an initial search, usually one or more potential donors are identified. If these persons are willing to continue - to participate in further testing, a health exam and donation -when they are ""available."" This is how we determine the availability rate. In rare cases, an individual may withdraw from consideration. There are reasons why an individual may not be able to donate at a specific time (e.g., temporary change in health status such as pregnancy, on military deployment, etc.). We strive to ensure that all volunteers will follow through if matched with a patient. We communicate regularly to keep them informed and inspired, and each renews their commitment and contact information each year. In the past eight years, we have quadrupled the number of minorities who found an available match and proceeded to transplant.

Program Success Examples:

In August 2006, 20-year-old Rachael started her sophomore year at Kansas State University. Bothered by a foot infection, a blood test revealed she had myelodysplastic syndrome (MDS), which can develop into a deadly type of leukemia. ""My heart sank. I knew it was bad, but I didn't know how bad,"" said Rachael. A physician told her she would need to have a marrow transplant.Her brother Matthew was not a match, but a donor was found on Be The Match Registry. After 6-8 months of treatment, Rachel began to feel better and returned to school in August 2007. Rachel's donor, Mike, came to Kansas City to meet her family and share a dance at her wedding. ""My donor gave me my hope and my future,"" says Rachael. ""Because of him I was able to graduate college, get married, and live out my dream job."" Today, Rachael is 28 and cancer-free. She now works for Be The Match, inspiring thousands to become marrow volunteers: ""Be The Match Registry is my life, my passion, the reason I am alive today.""

Program: Greater Kansas City Patient Assistance Program (GuideStar Nonprofit Profile
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March 2015)

Budget:
--
Category:
Health Care, General/Other
Population Served:
Other Named Groups

Program Description:

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

Program Long-Term Success:

Our goal is to assist 100% of greater Kansas City area patients who qualify. As the only organization that connects patients with their donor match, we know who patients are, where they live, and where they are being treated. Uniquely, we support all qualifying Kansas City area patients receiving treatment at 137 partnering transplant centers in the U.S. Patients might select out-of-state hospitals for reasons such as disease specialty. We send assistance to their home or temporary lodging.

Program Short-Term Success:

Social workers at the transplant centers help families complete the application, which is approved based on need as determined by the difference between the household's income and expenses. When income exceeds 500% of Federal Poverty Guidelines, the family is not eligible. Our surveys show patients' out-of-pocket expenses exceed their income by an average of $1,400 per month. Since treatment takes 3-6 months, this gap is significant. Outcomes for 2013 include: Nationwide: 1,807 patients received $3,203,450In Kansas and Missouri: 60 patients received $101,710In the greater Kansas City area, 31 patients received $42,940. These patients lived in Grain Valley, Grandview, Independence, Kansas City, Lawson, Lees Summit, Leawood, Lenexa, Lexington, Overland Park, Paola, Peculiar, Pleasant Hill, Prairie Village, Raymore, Raytown, and Smithville. On our surveys, patients have rated their satisfaction consistently at or above 96% since 2006. They are extremely grateful for the support.

Program Success Monitored by:

The number of applications and the financial needs of patient families can fluctuate greatly. We track and review data to ensure that our estimates - which are based on historical trends - are on track. For example, December trends lower in activity while spring and fall bring increased activity. We also track patients' financial needs and household income as reported on their applications, which is compared to the support we are able to provide. For recovery grants, we give more assistance to high-need patients. On average, we assist with ~10% of a patient's out-of-pocket expenses. Data tracked includes: number of patients applying; number of qualifying patients assisted (goal of 100% maintained since 2006); grant amounts and averages; and demographics such as gender, age, race and ethnicity, and city and state of residence. Depending on available resources, we raise or lower assistance amounts, balancing against the number of patients applying and their demonstrated financial needs.

Program Success Examples:

Assistance for a Kansas City PatientWhen Bruce had swollen glands on his neck and under his arms, the diagnosis was stage IV Non-Hodgkins Lymphoma. His first transplant was autologous (using his own cells), but he later developed myelodysplastic syndrome (MDS) and needed a second transplant. No one in his family matched, but an unrelated marrow donor was found on Be The Match Registry. Bruce says, ""This transplant was much harder on my body. They thought they were going to lose me, but I pulled through!"" Bruce was off work for at least a year. Kirk, his partner, was still able to work but had to take unpaid time off to care for him. Even with good insurance coverage, losing so much income made it hard to pay all the expenses. Bruce says, ""Be The Match's assistance was a gift from heaven. When you're sick and can't work for a year, you don't know what you're going to do. It made a big difference in our lives."" Today, Bruce pays it forward by fundraising for the program.

Program: Center for International Blood and Marrow Transplant Research (CIBMTR) (GuideStar Nonprofit Profile
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March 2015)

Budget:
--
Category:
Medical Research, General/Other
Population Served:
Other Named Groups

Program Description:

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

Program Long-Term Success:

CIBMTR research increases survival and enriches the quality of life of thousands of patients. This proven record of advancement will continue until every patient goes on to live a long, healthy life. This research translates into changes in clinical practice and gains in transplant outcomes. Survival rates have improved significantly and are now comparable to related transplants. But complications are still a challenge. Through the CIBMTR, we will discover prevention and treatment solutions.

Program Short-Term Success:

CIBMTR research benefits physicians and patients by changing medical practice and improving transplant outcomes. Example: Marrow vs. PBSCThis groundbreaking study tested whether using peripheral blood stem cells (PBSC) as a cell source leads to similar survival compared to marrow. Previously, no guidelines had existed to help physicians determine which cell source might be best for a specific patient. We found that PBSC engrafts faster than marrow but brings a higher risk of Graft-Vs.-Host Disease. These findings help physicians make the best choice for their patients. Example: Cardiovascular Late EffectsCardiovascular (CV)-related late effects such as hypertension, stroke, and congestive heart failure can have long-lasting and devastating effects on pediatric transplant survivors. This study will help to identify genetic and clinical factors that predispose pediatric patients to late CV effects. If risk factors are identified, we can develop screening and preventative interventions.

Program Success Monitored by:

As the overarching, definitive research partnership in the field, the CIBMTR has over 400 centers reporting outcomes and participating in studies and trials to increase efficiency and effectiveness. It is also the centralized repository for outcomes data, collecting data on all patients who have been recipients of a stem cell therapeutics product (e.g., marrow) from a donor." This unique resource enables investigators to explore treatment-related questions to yield better outcomes. Through strategic coordination, 1,600 investigators serve on 19 scientific committees to oversee our national research agenda. This successful partnership had over 254 advanced research studies underway in 2013. Dozens of clinical trials with nationwide transplant center participation were also underway or in development in 2013. The CIBMTR produces the most authoritative findings which are readily adopted by physicians to advance medical care and transplant outcomes.

Program Success Examples:

The CIBMTR leads the Blood and Marrow Transplant Clinical Trials Network. Since 2001, it has launched 28 clinical trials that enrolled over 5,000 patients. The CIBMTR also gives access to resources and expertise to the medical and scientific communities. Outcomes data is collected worldwide, resulting in a research database with information on 350,000 patients. Data are freely available to investigators interested in transplantation and treatments for cancer and other life-threatening diseases.Over 700 publications have resulted from analyses of these data, which have changed clinical practice and improved patients' lives.Our Repository houses the largest collection of biological samples. The 35,000-square-foot warehouse is equipped with floor-to-ceiling computerized storage, 2 massive walk-in freezers, 30 industrial freezers, and 20 cryogenic liquid nitrogen tanks. Samples stored: 11MSample sets added each year: Over 400,000Donor/recipient pairs (blood) for research: 22,000
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Impact Summary from the Nonprofit

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.
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