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Nonprofiteer
← FAMILIES OF SMA

Form 990 for tax year 2023

Filed by FAMILIES OF SMA.

Totals

Total revenue
$14,785,235
Total expenses
$15,621,865
Contributions and grants received
$7,517,231
Grants paid
$2,062,306
Program service revenue
$6,958,513
Investment income
$133,015
Other revenue
$176,476
Total assets, end of year
$10,703,968
Total liabilities, end of year
$4,582,639
Net assets or fund balances, end of year
$6,121,329
Program services expenses (Part IX)
$12,402,067
Management and general expenses
$1,345,337
Fundraising expenses
$1,874,461
Program service expenses (Part III)
$12,402,067

Program services were 79.4% 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.

Revenue

Part VIII, the statement of revenue.

  • 1c · Fundraising events

    $2,635,880

  • 1f · All other contributions, gifts and grants

    $4,881,351

  • 1g · Noncash contributions included above

    $210,567

  • 2a · Program service revenue: ANNUAL CONFERENCE

    total $4,694,448 · related or exempt $4,694,448

  • 2b · Program service revenue: INDUSTRY SPONSORED RESEARCH

    total $1,581,564 · related or exempt $1,581,564

  • 2c · Program service revenue: SUMMIT OF STRENGTH SYMPOSIUMS

    total $682,501 · related or exempt $682,501

  • 3 · Investment income

    total $118,983 · excluded $118,983

  • 7a · Gross sales of assets other than inventory

    securities $641,319

  • 7b · Less cost or other basis and sales expenses

    securities $627,287

  • 7c · Gain or loss

    securities $14,032

  • 7d · Net gain or loss

    total $14,032 · excluded $14,032

  • 8a · Fundraising events: gross income

    $595,168

  • 8a · Fundraising events: contributions included on line 1c

    $2,635,880

  • 8b · Fundraising events: direct expenses

    $484,407

  • 8c · Net income from fundraising events

    total $110,761 · excluded $110,761

  • 11a · Other revenue: STORE MERCHANDISE

    total $36,109 · related or exempt $36,109

  • 11b · Other revenue: MISCELLANEOUS

    total $19,059 · related or exempt $19,059

  • 11c · Other revenue: GRANT FORFEITURES

    total $10,547 · related or exempt $10,547

  • 11e · Other revenue, total

    $65,715

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $1,545,948 · program services $1,545,948

  • 2 · Grants to domestic individuals

    total $101,596 · program services $101,596

  • 3 · Grants to foreign organizations and individuals

    total $414,762 · program services $414,762

  • 5 · Compensation of officers, directors and key employees

    total $1,132,708 · program services $590,213 · management and general $176,779 · fundraising $365,716

  • 7 · Other salaries and wages

    total $3,851,666 · program services $2,457,970 · management and general $540,072 · fundraising $853,624

  • 8 · Pension plan contributions

    total $96,232 · program services $62,119 · management and general $13,277 · fundraising $20,836

  • 9 · Other employee benefits

    total $325,706 · program services $199,982 · management and general $44,056 · fundraising $81,668

  • 10 · Payroll taxes

    total $351,351 · program services $215,133 · management and general $50,313 · fundraising $85,905

  • 11b · Fees: legal

    total $5,893 · management and general $5,893

  • 11c · Fees: accounting

    total $38,400 · management and general $38,400

  • 11f · Fees: investment management

    total $15,593 · management and general $15,593

  • 11g · Fees: other

    total $321,058 · program services $286,513 · management and general $20,020 · fundraising $14,525

  • 12 · Advertising and promotion

    total $33,359 · program services $24,301 · management and general $4,502 · fundraising $4,556

  • 13 · Office expenses

    total $556,130 · program services $473,317 · management and general $24,475 · fundraising $58,338

  • 14 · Information technology

    total $562,917 · program services $394,042 · management and general $39,404 · fundraising $129,471

  • 16 · Occupancy

    total $122,592 · program services $75,063 · management and general $17,555 · fundraising $29,974

  • 17 · Travel

    total $300,900 · program services $184,241 · management and general $43,089 · fundraising $73,570

  • 19 · Conferences, conventions and meetings

    total $5,082,997 · program services $4,878,749 · management and general $144,781 · fundraising $59,467

  • 22 · Depreciation, depletion and amortization

    total $355,693 · program services $342,540 · management and general $4,858 · fundraising $8,295

  • 23 · Insurance

    total $61,850 · program services $29,758 · management and general $20,209 · fundraising $11,883

  • 24a · Other expenses: BANK CHARGES, CREDIT CA

    total $135,350 · management and general $91,321 · fundraising $44,029

  • 24b · Other expenses: WEBSITE

    total $107,744 · program services $80,807 · management and general $5,387 · fundraising $21,550

  • 24c · Other expenses: PROMOTIONAL ITEMS

    total $27,854 · program services $22,313 · management and general $5,541

  • 24d · Other expenses: DUES AND SUBSCRIPTIONS/

    total $25,210 · management and general $19,710 · fundraising $5,500

  • 24e · All other expenses

    total $48,356 · program services $22,700 · management and general $20,102 · fundraising $5,554

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $4,602,807 · end of year $3,808,783

  • 3 · Pledges and grants receivable

    beginning of year $3,933,196 · end of year $4,000,444

  • 9 · Prepaid expenses and deferred charges

    beginning of year $1,702,133 · end of year $223,881

  • 10a · Land, buildings and equipment: cost or other basis

    $1,299,136

  • 10b · Land, buildings and equipment: accumulated depreciation

    $1,137,543

  • 10c · Land, buildings and equipment, net

    beginning of year $253,762 · end of year $161,593

  • 11 · Investments: publicly traded securities

    beginning of year $1,851,892 · end of year $2,291,309

  • 14 · Intangible assets

    beginning of year $131,096 · end of year $33,647

  • 15 · Other assets

    beginning of year $238,418 · end of year $184,311

  • 17 · Accounts payable and accrued expenses

    beginning of year $2,474,064 · end of year $2,962,429

  • 18 · Grants payable

    beginning of year $1,542,929 · end of year $1,245,367

  • 19 · Deferred revenue

    beginning of year $1,465,456 · end of year $0

  • 25 · Other liabilities

    beginning of year $438,124 · end of year $374,843

  • 27 · Net assets without donor restrictions

    beginning of year $1,566,462 · end of year $1,424,129

  • 28 · Net assets with donor restrictions

    beginning of year $5,226,269 · end of year $4,697,200

Mission and programs · 2023

Mission

CURE SMA LEADS THE WAY TO A WORLD WHERE EVERYONE IMPACTED BY SPINAL MUSCULAR ATROPHY (SMA) IS EMPOWERED TO LEAD INDEPENDENT, SUCCESSFUL, AND FULFILLING LIVES. WE STRIVE TO CREATE A COMMUNITY WHERE EVERY INDIVIDUAL IS HEARD AND FEELS WELCOMED. CURE SMA PROVIDES PRACTICAL SUPPORT PROGRAMS FOR OUR COMMUNITY AND ADVOCATES FOR THEIR NEEDS. WE FUND AND DIRECT COMPREHENSIVE RESEARCH THAT DRIVES BREAKTHROUGHS IN TREATMENT, AND WE ADVANCE ACCESS TO HIGH QUALITY CARE. WE WILL NOT STOP UNTIL WE HAVE A CURE.

  • INDIVIDUALS WITH SMA NEED SPECIALIZED CARE AND EQUIPMENT, WHICH CAN PUT ENORMOUS LOGISTICAL AND FINANCIAL PRESSURE ON FAMILIES. CURE SMA IS COMMITTED TO MAKING SURE THAT FAMILIES HAVE THE BEST, MOST ACCURATE INFORMATION ABOUT SMA AND WHAT IT MEANS FOR THEM, AND TO MAKING SURE THAT THEY UNDERSTAND ALL THE OPTIONS AND RESOURCES AVAILABLE TO THEM FROM DAY-TO-DAY CARE TO THE CHANGING LANDSCAPE OF RESEARCH BREAKTHROUGHS AND TREATMENTS. THIS INCLUDES OUR CARE SERIES BOOKLETS, WHICH ARE SENT OUT AS PART OF INFORMATIONAL PACKETS AVAILABLE AT NO COST TO ANYONE WHO REQUESTS ONE. DEVELOPED BY MEDICAL EXPERTS AND REVIEWED BY FAMILIES, THESE BOOKLETS COVER TOPICS SUCH AS BREATHING, NUTRITION, PALLIATIVE CARE, GENETICS, MUSCULOSKELETAL ISSUES, AND MORE. IN ADDITION, OUR EQUIPMENT POOL GIVES FAMILIES ACCESS TO SPECIALIZED ITEMS LIKE CAR BEDS, STROLLERS AND BATHING SYSTEMS AT NO COST. EVERY NEWLY-DIAGNOSED FAMILY RECEIVES A CARE PACKAGE FROM CURE SMA, FULL OF TOYS APPROPRIATE TO THE CHILD'S TYPE OF THE DISEASE, IMPARTIAL INFORMATION FOR PARENTS, AND USEFUL ITEMS SUGGESTED BY OTHER SMA PARENTS BASED ON THEIR OWN EXPERIENCES. EVERY NEW ADULT TO THE COMMUNITY RECEIVES A PACKAGES OF SPECIAL INDEPENDENCE RELATED ITEMS.CURE SMA ALSO EDUCATES THE PUBLIC ABOUT SMA, TO STRENGTHEN THE SUPPORT AVAILABLE TO FAMILIES. THIS INCLUDES DIRECTIONS, A BIANNUAL FAMILY SUPPORT NEWSLETTER, AND COMPASS, A QUARTERLY UPDATE ON RESEARCH DEVELOPMENTS

    Expenses $2,342,300 · Grants $495,608 · Revenue $36,109

  • CURE SMA FOCUSES ON THREE DIFFERENT YET EQUALLY CRITICAL AND INTERDEPENDENT RESEARCH AREAS: BASIC RESEARCH, TO UNDERSTAND THE CAUSE AND BIOLOGY OF SMA; DRUG DISCOVERY, TO CONVERT BASIC RESEARCH IDEAS INTO PRACTICAL NEW DRUG CANDIDATES; AND CLINICAL & REGULATORY RESEARCH, TO PROVIDE THE INFRASTRUCTURE TO TEST THE DRUG CANDIDATES. DURING THIS PERIOD CURE SMA FUNDED SIX NEW AND SIX ONGOING BASIC RESEARCH GRANTS. WE ALSO FUNDED AND EXECUTED MULTIPLE CLINICAL AND REGULATORY FOCUSED PROJECTS, TO INCREASE SMA CLINICAL TRIAL SITE CAPACITY AND READINESS, TO PROVIDE REGULATORY AUTHORITIES WITH DATA ON THE SMA POPULATION AND THEIR REPORTED UNMET NEEDS, TO IDENTIFY POTENTIAL BIOMARKERS FOR SMA, AND TO COLLECT DATA TO UNDERSTAND THE PATIENT EXPERIENCE WITH SMA. CURRENTLY, THERE ARE THREE APPROVED DRUGS FOR SMA, WITH ANOTHER SEVERAL DOZEN DRUG PROGRAMS IN DEVELOPMENT, INCLUDING EIGHT IN CLINICAL TRIALS. CURE SMA SUPPORTED CLINICAL CARE DATA COLLECTION TO BETTER UNDERSTAND SMA CARE. THE CURE SMA CARE CENTER NETWORK KICKED OFF IN 2018. THE GOAL OF THE SMA CARE CENTER NETWORK IS TO GATHER AND THEN DISSEMINATE NEW KNOWLEDGE TO ADVANCE THE SMA STANDARD OF CARE FOR PEDIATRIC AND ADULT PERSONS. IN 2024, CURE SMA PROVIDED FUNDING TO 29 CARE CENTERS. THESE CENTERS PROVIDED PATIENT CONSENTED ELECTRONIC MEDICAL RECORD DATA AND ELECTRONIC CASE REPORT FORMS TO THE CURE SMA CLINICAL DATA REGISTRY. DUE TO INCREASING COSTS AND INEFFICIENCIES IN DATA COLLECTION THROUGH THE ELECTRONIC MEDICAL RECORD, CURE SMA CLOSED THE CLINICAL DATA REGISTRY EFFECTIVE JUNE 2024. CURE SMA ALSO COLLECTS DATA DIRECTLY FROM THE SMA COMMUNITY OF PATIENTS AND CAREGIVERS THROUGH THE ANNUAL COMMUNITY UPDATE SURVEY TO BETTER UNDERSTAND THE SMA JOURNEY. THE ABOVE DATA SOURCES ARE COMBINED AND ANALYZED ANNUALLY TO IDENTIFY TRENDS IN DEMOGRAPHICS, DIAGNOSIS, SMA TREATMENTS, UNMET NEEDS, PATIENT CARE AND OUTCOMES. THE MOST RECENT ANALYZES WERE PUBLISHED IN THE STATE OF SMA 2023 REPORT AVAILABLE ON OUR WEBSITE. AS OF JANUARY 2024, SMA NEWBORN SCREENING HAS BEEN IMPLEMENTED ACROSS IN ALL U.S. STATES AND WASHINGTON, D.C. CURE SMA PUBLISHED "NEWBORN SCREENING AND BIRTH PREVALENCE FOR SPINAL MUSCULAR ATROPHY IN THE US" IN JAMA PEDIATRICS IN JULY 2024 TO PROVIDE UPDATED INFORMATION BASED ON SMA NEWBORN SCREENING RESULTS FROM STATE PUBLIC HEALTH LABORATORIES. IN ADDITION, CURE SMA PUBLISHED "SPINAL MUSCULAR ATROPHY UPDATE IN BEST PRACTICES: RECOMMENDATIONS FOR DIAGNOSIS CONSIDERATIONS" IN NEUROLOGY CLINICAL PRACTICE IN MAY 2024. THESE PUBLICATIONS CONTRIBUTE TO THE GROWING LITERATURE ON SMA CLINICAL CARE. RESOURCES WERE ALSO DEVOTED TO MAINTAINING WEBSITE LISTINGS OF CARE CENTERS, SMA NEWBORN SCREENING REFERRAL CENTERS AND TREATMENT CENTERS THAT PROVIDE FDA-APPROVED SMA TREATMENTS.

    Expenses $2,976,714 · Grants $1,465,102 · Revenue $1,592,111

  • WE HOSTED THE 2024 ANNUAL SMA CONFERENCE IN AUSTIN, TX, WITH OVER 1,975 REGISTERED ATTENDEES. OUR ANNUAL CONFERENCE IS AN INVALUABLE RESOURCE FOR THE ENTIRE SMA COMMUNITY. THE CONFERENCE IS THE LARGEST IN THE WORLD FOCUSED SPECIFICALLY ON SMA. THE RESEARCHER AND CLINICAL CARE CONFERENCE ATTRACTED THE TOP SCIENTISTS AND COMPANIES IN THE FIELD. THE COMMUNITY CONFERENCE INCLUDES A VARIETY OF WORKSHOPS, KEYNOTE SESSIONS WITH LEADING EXPERTS, AND MORE-PLUS GREAT EVENTS SUCH AS OUR TEEN AND ADULTS WITH SMA SOCIALS, THE FAMILY FRIENDLY RESEARCHER POSTER SESSION AND OUR MEET & GREET WITH A FAMILY FUN FEST. THE RESEARCHER CONFERENCE CREATES OPEN COMMUNICATION OF EARLY, UNPUBLISHED SCIENTIFIC DATA, ACCELERATING THE PACE OF RESEARCH. THE MEETING ALSO FURTHERS RESEARCH BY BUILDING PRODUCTIVE COLLABORATIONS-INCLUDING CROSS-DISCIPLINARY DIALOGUE, PARTNERSHIPS, INTEGRATION OF NEW RESEARCHERS AND DRUG COMPANIES, AND EDUCATIONAL OPPORTUNITIES FOR JUNIOR RESEARCHERS. COMMUNITY ATTENDEES HAVE DIRECT ACCESS TO THE LATEST INFORMATION ABOUT RESEARCH, AND RESEARCHERS HAVE AN OPPORTUNITY TO BUILD PERSONAL CONNECTIONS WITH THE PATIENTS WHO WILL BENEFIT FROM THEIR WORK.

    Expenses $7,083,053 · Grants $101,596 · Revenue $5,396,008

As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Allyson Henkel

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Amy Medina

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Bakri Elsheikh

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Brad Nunemaker

    TREASURER & VICE CHAIR

    Total calculated
    $0
    Hours/week
    5
  • Brian Snyder

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Brianna Gross

    DIRECTOR (START 1/1/24)

    Total calculated
    $0
    Hours/week
    2
  • Corey Braastad

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Diana Castro

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Edmund Lee

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Gillian Mullins

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Jaclyn Greenwood

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Joe Wiseman

    DIRECTOR (START 4/20/24)

    Total calculated
    $0
    Hours/week
    2
  • Kaleen Robinson

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Karen McRoy-Negrin

    DIRECTOR (START 1/1/24)

    Total calculated
    $0
    Hours/week
    2
  • Kelly Jankowski

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Marc Ginsky

    DIRECTOR (START 4/20/24)

    Total calculated
    $0
    Hours/week
    2
  • Mark Moore

    DIRECTOR (START 4/20/24)

    Total calculated
    $0
    Hours/week
    2
  • Nick Farrell

    BOARD CHAIR

    Total calculated
    $0
    Hours/week
    5
  • Peter Statile

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Rob Lockwood

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Robert Graham

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Shannon Zerzan

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Spencer Perlman

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2
  • Tom Murray

    DIRECTOR (THROUGH 12/31/23)

    Total calculated
    $0
    Hours/week
    2
  • Kenneth Hobby

    PRESIDENT

    Total calculated
    $358,071
    From this org
    $338,969
    From related orgs
    $0
    Other
    $19,102
    Hours/week
    70

    Schedule J breakdown matched by us

    Base
    $338,969
    Bonus
    $0
    Other
    $0
    Deferred
    $12,242
    Nontaxable benefits
    $6,860
    Filer's total
    $358,071
  • Marline Pagan

    CHIEF OPERATING OFFICER

    Total calculated
    $252,232
    From this org
    $223,535
    From related orgs
    $0
    Other
    $28,697
    Hours/week
    60

    Schedule J breakdown matched by us

    Base
    $223,535
    Bonus
    $0
    Other
    $0
    Deferred
    $9,046
    Nontaxable benefits
    $19,651
    Filer's total
    $252,232
  • Mary Schroth

    CHIEF MEDICAL OFFICER

    Total calculated
    $299,664
    From this org
    $280,222
    From related orgs
    $0
    Other
    $19,442
    Hours/week
    60

    Schedule J breakdown matched by us

    Base
    $280,222
    Bonus
    $0
    Other
    $0
    Deferred
    $11,333
    Nontaxable benefits
    $8,109
    Filer's total
    $299,664
  • Amy Thomasson

    VICE PRESIDENT, MARKETING & COMMUNICATION (THROUGH

    Total calculated
    $151,602
    From this org
    $147,429
    From related orgs
    $0
    Other
    $4,173
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $147,429
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $4,173
    Filer's total
    $151,602
  • Colleen McCarthy O'Toole

    SR VICE PRESIDENT, COMMUNI

    Total calculated
    $202,736
    From this org
    $176,138
    From related orgs
    $0
    Other
    $26,598
    Hours/week
    60

    Schedule J breakdown matched by us

    Base
    $176,138
    Bonus
    $0
    Other
    $0
    Deferred
    $6,992
    Nontaxable benefits
    $19,606
    Filer's total
    $202,736
  • Jackie Glascock

    VICE PRESIDENT OF RESEARCH

    Total calculated
    $150,795
    From this org
    $143,876
    From related orgs
    $0
    Other
    $6,919
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $143,876
    Bonus
    $0
    Other
    $0
    Deferred
    $5,742
    Nontaxable benefits
    $1,177
    Filer's total
    $150,795
  • Jamie Gibson

    CHIEF DEVELOPMENT OFFICER

    Total calculated
    $149,645
    From this org
    $142,692
    From related orgs
    $0
    Other
    $6,953
    Hours/week
    40
  • Maynard Friesz

    VICE PRESIDENT, POLICY

    Total calculated
    $163,361
    From this org
    $145,434
    From related orgs
    $0
    Other
    $17,927
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $145,434
    Bonus
    $0
    Other
    $0
    Deferred
    $5,821
    Nontaxable benefits
    $12,106
    Filer's total
    $163,361

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

Answered yes

  • 3 · Compensation committee
  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

The filer's explanations (Part III)

PART I, LINE 3
APPROVED BY THE BOARD OF DIRECTORS. THE BOARD'S EXECUTIVE COMMITTEE CONDUCTS A MARKET SURVEY OF THE POSITION USING INDEPENDENT COMPENSATION SOURCES, AND THEN PRESENTS A RECOMMENDATION TO THE FULL BOARD FOR APPROVAL.

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

The 10 largest by cash amount. The API serves every itemized grant.

Provenance

Return type
form_990
Tax year
2023
Filed
14 November 2024
IRS schema version
2023v5.1
Source object
202413199349311916

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

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