Form 990 for tax year 2022

Totals

Total revenue

$16,745,686

Total expenses

$18,411,117

Contributions and grants received

$16,285,176

Grants paid

$263,667

Program service revenue

$23,217

Investment income

$437,293

Other revenue

$0

Total assets, end of year

$18,245,423

Total liabilities, end of year

$7,727,579

Net assets or fund balances, end of year

$10,517,844

Program services expenses (Part IX)

$16,397,425

Management and general expenses

$880,033

Fundraising expenses

$1,133,659

Program service expenses (Part III)

$16,397,425

Program services were 89.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2022

• RESEARCH - THE INTERNATIONAL MYELOMA FOUNDATION (IMF) IS THE LEADER IN GLOBALLY COLLABORATIVE MYELOMA RESEARCH. IMF SUPPORTS LAB-BASED RESEARCH AND HAS AWARDED OVER 151 GRANTS TO TOP JUNIOR AND SENIOR RESEARCH SCIENTISTS SINCE 1995. IN ADDITION, IMF BRINGS TOGETHER THE WORLD'S LEADING EXPERTS IN THE MOST SUCCESSFUL AND UNIQUE WAY THROUGH THE INTERNATIONAL MYELOMA WORKING GROUP, WHICH IS PUBLISHING IN PRESTIGIOUS MEDICAL JOURNALS, CHARTING THE COURSE TO A CURE, MENTORING THE NEXT GENERATION OF INNOVATIVE INVESTIGATORS, AND IMPROVING LIVES THROUGH BETTER CARE. THE BLACK SWAN RESEARCH INITIATIVE IS A MULTINATIONAL CONSORTIUM OF LEADING MYELOMA EXPERTS WHO ARE HARNESSING NEW TECHNOLOGIES AND THE LATEST MYELOMA TREATMENTS TO FIND A PATHWAY TO A CURE. THE BLACK SWAN RESEARCH STRATEGY CAPITALIZES ON THE AVAILABILITY OF POTENT NOVEL THERAPIES AND THE ADVENT OF ULTRA-SENSITIVE TESTS TO MEASURE EXACTLY WHEN AND HOW THOSE THERAPIES ARE WORKING IN PATIENTS. THE BLACK SWAN RESEARCH INITIATIVE IS DEDICATED TO DEVELOPING NEW CURATIVE THERAPIES FOR MYELOMA.

  Expenses $7,307,024 · Grants $196,667

• EDUCATION AND AWARENESS - ALTHOUGH IT IS THE SECOND MOST COMMON BLOOD CANCER, MULTIPLE MYELOMA IS STILL A RELATIVELY UNKNOWN DISEASE. FOR MANY PATIENTS AND THEIR CAREGIVERS, IT IS AT DIAGNOSIS WHEN THEY FIRST HEARD THE WORD "MYELOMA". IMF RECOGNIZES THE NEED FOR COMPREHENSIVE EDUCATION PROGRAMS FOR BOTH THE PATIENT AND THE PHYSICIAN TO ENSURE THAT PATIENTS ARE DIAGNOSED CORRECTLY AND TREATED EFFECTIVELY. OUR LIBRARY OF MORE THAN 100 PUBLICATIONS FOR PATIENTS, CAREGIVERS AND HEALTHCARE PROFESSIONALS, IS AVAILABLE FREE OF CHARGE. PUBLICATIONS ARE UPDATED ANNUALLY AND AVAILABLE IN MORE THAN 19 INTERNATIONAL LANGUAGES. THE IMF EMPOWERS PATIENTS AND THEIR CAREGIVERS TO JOIN HEALTHCARE PROVIDERS AS ACTIVE DECISION-MAKING PARTNERS, LEADING TO THE BEST POSSIBLE QUALITY OF LIFE FOR EACH INDIVIDUAL MYELOMA PATIENT. THE IMF PRODUCES COMPREHENSIVE BUT 'USER-FRIENDLY' INFORMATION FOR THE ENTIRE MYELOMA COMMUNITY. THE IMF'S PUBLICATIONS LIBRARY INCLUDES AN EXTENSIVE CATALOG OF BOOKLETS, TIP CARDS, ARTICLES, WEBINARS AND TELECONFERENCES, BLOGS, DIGITAL MEDIA AND INTERVIEWS, ALL WRITTEN, CREATED, AND PRODUCED BY THE IMF WITH OVERSIGHT BY ITS SCIENTIFIC ADVISORY COMMITTEE. THE IMF LIBRARY'S BROAD SCOPE INCLUDES INFORMATION ABOUT MYELOMA TREATMENT OPTIONS, CLINICAL TRIALS, DIVERSITY, EQUITY AND QUALITY OF LIFE CONSIDERATIONS FOR PATIENTS AND PHYSICIANS.

  Expenses $2,940,039

• PATIENT AND FAMILY SEMINARS: THE IMF'S PATIENT AND FAMILY SEMINARS PRESENT VITAL INFORMATION ABOUT NEW TREATMENTS AND CLINICAL TRIALS, PROVIDE TIME WITH MYELOMA SPECIALISTS IN INTIMATE SETTINGS, AND ALLOW PARTICIPANTS TO SHARE THEIR PERSONAL EXPERIENCES AND SUPPORT. PREMIER MYELOMA EXPERTS VOLUNTEER THEIR TIME TO THE SEMINARS, TO EMPOWER PATIENTS AND THEIR FAMILIES TO MAKE EDUCATED TREATMENT CHOICES TAILORED TO THEIR NEEDS. IN ADDITION TO PATIENT AND FAMILY SEMINARS, THE IMF FACILITATES REGIONAL COMMUNITY WORKSHOPS, WHICH SERVE AS CONDENSED SEMINARS IN SMALLER CITIES TO EXPAND THE REACH OF IMF PROGRAMS AND UP-TO-DATE INFORMATION ON MYELOMA CARE, SUPPORT AND TREATMENT TO A WIDER AUDIENCE AT NO CHARGE.

  Expenses $1,461,034

• INTERNATIONAL - THE IMF GROWS ITS NETWORK OF HEALTH CARE PROFESSIONALS AROUND THE WORLD. KEY TEAM MEMBERS ORGANIZE PHYSICIAN AS WELL AS PATIENT MEETINGS IN ORDER TO PROVIDE EDUCATION ABOUT THE LATEST DEVELOPMENTS IN THE FIELD OF MULTIPLE MYELOMA.SUPPORT GROUPS - THROUGH A GLOBAL COMMUNITY OF VOLUNTARY SUPPORT GROUPS, THE IMF SEEKS TO ENSURE THAT PATIENTS AND FAMILIES HAVE LOCAL ACCESS TO SUPPORT AND EDUCATION. THE IMF CURRENTLY SUPPORTS OVER 300 SUPPORT GROUPS WORLDWIDE. THE IMF OFFERS UNEQUALED WEBSITE CREATION AND HOSTING FOR LOCAL SUPPORT GROUPS, AND PROVIDED A UNIQUE OPPORTUNITY FOR SOME SUPPORT GROUP LEADERS TO ATTEND THE AMERICAN SOCIETY OF HEMATOLOGY ANNUAL MEETING. THE 24TH ANNUAL SUPPORT GROUP LEADERS SUMMIT TOOK PLACE WITH MORE THAN 90 LEADERS IN ATTENDANCE. TECHNOLOGY CONTINUES TO BE EMPHASIZED FOR SUPPORT GROUP LEADERS. DURING THE PANDEMIC, THE IMF TRANSITIONED MORE THAN 100 SUPPORT GROUPS TO VIRTUAL MONTHLY MEETINGS, AND CONTINUES TO SUPPORT AND MAINTAIN THESE MONTHLY MEETINGS. THE IMF ALSO CONTINUED TO UPDATE ITS APP SPECIFICALLY DESIGNED FOR SUPPORT GROUP LEADERS WHICH OFFER MEETING AND EDUCATION MATERIALS ACCESSIBLE TO HELP BUILD EFFECTIVE COMMUNICANURSE - THE IMF NURSE LEADERSHIP BOARD IS A PROFESSIONAL PARTNERSHIP REPRESENTING NURSE EXPERTS CARING FOR MYELOMA PATIENTS AT LEADING MEDICAL CENTERS. FOUNDED IN NOVEMBER 2006, THE NLB HAS PROVEN TO BE INVALUABLE TO THE MYELOMA COMMUNITY AS A PLATFORM THAT BOLSTERS NURSING EDUCATION, CLINICAL CARE EXPERIENCE EXCHANGE, AND PATIENT KNOWLEDGE AND EMPOWERMENT IN AN EFFORT TO OPTIMIZE OUTCOMES FOR PATIENTS WITH MYELOMA. THIS BOARD OF EXPERIENCED MYELOMA NURSES HAS MADE GREAT STRIDES IN IMPROVING THE NURSING CARE AND SELF-CARE OF MYELOMA PATIENTS SINCE ITS INCEPTION.CLINICAL MEETINGS - IMF TEAM MEMBERS ORGANIZE CLINICAL MEETINGS, BRINGING TOGETHER THE WORLD'S LEADING MYELOMA EXPERTS, TO FORM A COALITION THAT WILL WORK COLLABORATIVELY ON MYELOMA-RELATED PROJECTS AND AVOID DUPLICATION OF EFFORTS AND DILUTION OF VALUABLE RESOURCES. THESE COALITIONS PROMOTE EXCELLENCE IN CLINICAL PRACTICE, RESEARCH AND EDUCATION AND CME-ACCREDITED MEDICAL EDUCATION PROGRAMS. THIS PAST YEAR ALSO INCLUDED EDUCATION TO THE COMMUNITY PHYSICIAN AND NURSE VIA ONLINE AND LIVE INSTRUCTION.ADVOCACY - THE IMF IS DEDICATED TO CREATING A GLOBAL COMMUNITY THAT SUPPORTS THE WIDE-RANGING NEEDS OF ALL AFFECTED BY MYELOMA. THE IMF ADVOCATES ON BEHALF OF THOSE AFFECTED BY MULTIPLE MYELOMA FOR AN INCREASE IN ACCESSIBILITY OF HIGH-QUALITY DIAGNOSTICS AND TREATMENTS, FOR FUNDING OF MYELOMA-RELATED RESEARCH, AND FOR AN END TO INSURANCE COVERAGE DISPARITIES FOR TREATMENT. THE IMF INCLUDES THE ENTIRE MYELOMA COMMUNITY IN THESE EFFORTS AND CONTINUES TO EXPAND ITS COMMITMENT TO EMPOWERING PATIENTS, FAMILIES, AND FRIENDS TO ADVOCATE ON BEHALF OF PATIENT RIGHTS.INFOLINE - THE IMF'S TOLL-FREE INFORMATION TELEPHONE LINE PROVIDES LIFE-SAVING AND LIFE-CHANGING MYELOMA TREATMENT AND MANAGEMENT SUPPORT FROM COMPASSIONATE, HIGHLY TRAINED SPECIALISTS. AS NEW TREATMENT OPTIONS ARE GAINING ATTENTION AND USE IN MULTIPLE MYELOMA, ANSWERING QUESTIONS ABOUT MYELOMA, ITS TREATMENT, DRUG SIDE EFFECTS, OPTIONS FOR POSSIBLE CLINICAL TRIALS OTHER HEALTH CONCERNS, AND WHERE TO FIND LOCAL SUPPORT IS MORE IMPORTANT THAN EVER.WEBSITE - THE IMF WEBSITE IS THE LEADING RESOURCE FOR MYELOMA-RELATED CONTENT AND THE MOST COMPLETE SOURCE OF ANSWERS FROM THE MANY QUESTIONS ASKED BY THOSE NEWLY DIAGNOSED TO THOSE MANAGING MYELOMA FOR MANY YEARS. THE WEBSITE CONSIDERS PATIENTS, CAREGIVERS, FAMILY MEMBERS, AND HEALTHCARE PROFESSIONALS. INFORMATION IS AVAILABLE IN MULTIPLE LANGUAGES AND FOCUS IS ON THE IMF'S RESEARCH, EDUCATION, SUPPORT AND ADVOCACY INITIATIVES.MYELOMA TODAY - MYELOMA TODAY IS A QUARTERLY NEWSLETTER AND THE GO-TO RESOURCE FOR THE MYELOMA COMMUNITY TO LEARN ABOUT THE LATEST ADVANCES IN MYELOMA TREATMENT, RESEARCH AND QUALITY OF LIFE ISSUES. IT IS PROVIDED FREE OF CHARGE.INFORMATIONAL MAILINGS - THE INFOPACK IS MADE UP OF A SELECTION OF THE IMF'S PUBLICATIONS AND IS DESIGNED TO PROVIDE NEWLY DIAGNOSED PATIENTS AND THEIR FAMILIES WITH A COMPLETE UNDERSTANDING OF THE DISEASE AND CARE. THE INFO PACK CONTAINS INFORMATIVE MATERIALS FREE OF CHARGE IN 19 LANGUAGES.

  Expenses $4,689,328 · Grants $67,000 · Revenue $23,217

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

• CASE WESTERN RESERVE UNIVERSITY

  $53,333

  NOVEL ADJUVANTS TO PROTEASOME INHIBITORS FOR MYELOMA THERAPY

• DANA FARBER CANCER INSTITUTE

  $33,333

  DEFINING CELL STATES UNDERLYING TREATMENT RESISTANCE IN MYELOMA BY INTEGRATING MULTIOMIC SEQUENCING DATA

• UNIVERSITY OF SAN DIEGO

  $16,667

  TUNING THE INNATE IMMUNE MULTIPLE MYELOMA MICROENVIRONMENT BY MODULATING IRF4

• TRUSTEES OF BOSTON UNIVERSITY

  $16,667

  DEFINING A MOLECULAR SIGNATURE OF CARDIOTOXICITY IN SYSTEMIC IMMUNOGLOBIN LIGHT CHAIN AMYLOIDOSIS

Provenance

Return type

form_990

Tax year

2022

Filed

10 July 2024

IRS schema version

2022v5.0

Source object

202442079349300024

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