Totals
- Total revenue
- $13,668,775
- Total expenses
- $14,203,228
- Contributions and grants received
- $9,356,093
- Grants paid
- $3,121,518
- Program service revenue
- $3,981,929
- Investment income
- $85,789
- Other revenue
- $244,964
- Total assets, end of year
- $12,713,304
- Total liabilities, end of year
- $5,920,573
- Net assets or fund balances, end of year
- $6,792,731
- Program services expenses (Part IX)
- $11,430,514
- Management and general expenses
- $1,578,328
- Fundraising expenses
- $1,194,386
- Program service expenses (Part III)
- $11,430,514
Program services were 80.5% 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
$3,114,636
-
1f · All other contributions, gifts and grants
$6,241,457
-
1g · Noncash contributions included above
$303,437
-
2a · Program service revenue: ANNUAL CONFERENCE
total $2,166,179 · related or exempt $2,166,179
-
2b · Program service revenue: INDUSTRY SPONSORED RESEARCH
total $1,138,250 · related or exempt $1,138,250
-
2c · Program service revenue: SUMMIT OF STRENGTH SYMPOSIUMS
total $677,500 · related or exempt $677,500
-
3 · Investment income
total $87,007 · excluded $87,007
-
7a · Gross sales of assets other than inventory
securities $433,885
-
7b · Less cost or other basis and sales expenses
securities $435,103
-
7c · Gain or loss
securities -$1,218
-
7d · Net gain or loss
total -$1,218 · excluded -$1,218
-
8a · Fundraising events: gross income
$547,998
-
8a · Fundraising events: contributions included on line 1c
$3,114,636
-
8b · Fundraising events: direct expenses
$390,606
-
8c · Net income from fundraising events
total $157,392 · excluded $157,392
-
11a · Other revenue: GRANT FORFEITURES
total $48,777 · related or exempt $48,777
-
11b · Other revenue: STORE MERCHANDISE
total $32,744 · related or exempt $32,744
-
11c · Other revenue: MISCELLANEOUS
total $6,051 · related or exempt $6,051
-
11e · Other revenue, total
$87,572
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $2,372,768 · program services $2,372,768
-
2 · Grants to domestic individuals
total $76,027 · program services $76,027
-
3 · Grants to foreign organizations and individuals
total $672,723 · program services $672,723
-
5 · Compensation of officers, directors and key employees
total $934,245 · program services $605,944 · management and general $159,699 · fundraising $168,602
-
7 · Other salaries and wages
total $3,704,349 · program services $2,319,632 · management and general $822,196 · fundraising $562,521
-
8 · Pension plan contributions
total $102,107 · program services $63,713 · management and general $22,977 · fundraising $15,417
-
9 · Other employee benefits
total $283,588 · program services $178,525 · management and general $59,775 · fundraising $45,288
-
10 · Payroll taxes
total $319,600 · program services $201,508 · management and general $67,723 · fundraising $50,369
-
11b · Fees: legal
total $6,072 · management and general $6,072
-
11c · Fees: accounting
total $34,100 · management and general $34,100
-
11f · Fees: investment management
total $11,211 · management and general $11,211
-
11g · Fees: other
total $519,572 · program services $500,878 · management and general $7,122 · fundraising $11,572
-
12 · Advertising and promotion
total $76,133 · program services $59,158 · management and general $5,883 · fundraising $11,092
-
13 · Office expenses
total $514,406 · program services $438,249 · management and general $28,033 · fundraising $48,124
-
14 · Information technology
total $509,779 · program services $356,845 · management and general $35,685 · fundraising $117,249
-
16 · Occupancy
total $89,738 · program services $56,579 · management and general $19,016 · fundraising $14,143
-
17 · Travel
total $199,387 · program services $125,714 · management and general $42,250 · fundraising $31,423
-
19 · Conferences, conventions and meetings
total $3,133,182 · program services $2,990,092 · management and general $106,413 · fundraising $36,677
-
22 · Depreciation, depletion and amortization
total $237,999 · program services $225,812 · management and general $6,989 · fundraising $5,198
-
23 · Insurance
total $56,645 · program services $29,077 · management and general $20,300 · fundraising $7,268
-
24a · Other expenses: BANK CHARGES, CREDIT CA
total $114,420 · management and general $76,092 · fundraising $38,328
-
24b · Other expenses: WEBSITE
total $97,065 · program services $72,799 · management and general $4,853 · fundraising $19,413
-
24c · Other expenses: PROMOTIONAL ITEMS
total $63,178 · program services $62,396 · management and general $196 · fundraising $586
-
24d · Other expenses: STAFF DEVELOPMENT/TRAIN
total $35,012 · program services $22,075 · management and general $7,419 · fundraising $5,518
-
24e · All other expenses
total $39,922 · management and general $34,324 · fundraising $5,598
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $5,444,777 · end of year $4,602,807
-
3 · Pledges and grants receivable
beginning of year $3,845,469 · end of year $3,933,196
-
4 · Accounts receivable
beginning of year $122,677
-
9 · Prepaid expenses and deferred charges
beginning of year $93,219 · end of year $1,702,133
-
10a · Land, buildings and equipment: cost or other basis
$1,259,135
-
10b · Land, buildings and equipment: accumulated depreciation
$1,005,373
-
10c · Land, buildings and equipment, net
beginning of year $288,280 · end of year $253,762
-
11 · Investments: publicly traded securities
beginning of year $1,411,074 · end of year $1,851,892
-
14 · Intangible assets
beginning of year $85,619 · end of year $131,096
-
15 · Other assets
beginning of year $6,344 · end of year $238,418
-
17 · Accounts payable and accrued expenses
beginning of year $2,001,020 · end of year $2,474,064
-
18 · Grants payable
beginning of year $2,045,472 · end of year $1,542,929
-
19 · Deferred revenue
end of year $1,465,456
-
25 · Other liabilities
beginning of year $20,247 · end of year $438,124
-
27 · Net assets without donor restrictions
beginning of year $3,294,012 · end of year $1,566,462
-
28 · Net assets with donor restrictions
beginning of year $3,936,708 · end of year $5,226,269
Mission and programs · 2022
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 $2,578,143 · Grants $953,682 · Revenue $32,744
-
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 FIVE NEW AND EIGHT ONGOING BASIC RESEARCH GRANTS. WE ALSO FUNDED AND EXECUTED MULTIPLE CLINICAL AND REGULATORY FOCUSED PROJECTS, INCLUDING PROJECTS TO IMPLEMENT AND SUPPORT NEWBORN SCREENING FOR SMA AT THE STATE LEVEL, TO INCREASE THE NUMBER OF TRAINED SMA CLINICAL TRIALS SITES IN THE US, TO DEVELOP NEW OUTCOME MEASURES FOR SMA CLINICAL TRIALS, AND TO COLLECT DATA TO UNDERSTAND THE PATIENT EXPERIENCE WITH SMA. CURRENTLY, THERE ARE THREE APPROVED DRUGS FOR SMA, WITH ANOTHER DOZEN DRUG PROGRAMS IN DEVELOPMENT, INCLUDING SEVEN CLINICAL TRIALS. CURE SMA HAS FUNDED HALF OF ALL THE ONGOING DRUG PROGRAMS IN SMA.CURE SMA HAS EXPANDED FOCUS TO SUPPORT CLINICAL CARE. THE CURE SMA CARE CENTER NETWORK KICKED OFF IN 2018. THE GOAL OF THE SMA CARE CENTER NETWORK IS TO PROVIDE THE BEST HEALTHCARE FOR PEOPLE WITH SMA, INCLUDING OFFERING NEW THERAPIES, AND TO GATHER AND DISSEMINATE NEW KNOWLEDGE TO ADVANCE THE SMA STANDARD OF CARE FOR PEDIATRIC AND ADULT PERSONS. IN 2023, THE SMA CARE CENTER NETWORK EXPANDED BY 5 ADDITIONAL CENTERS FOR A TOTAL OF 29 CENTERS WHO RECEIVED GRANT FUNDING. THESE CENTERS PROVIDE PATIENT CONSENTED ELECTRONIC MEDICAL RECORD DATA AND ELECTRONIC CASE REPORT FORMS TO THE CURE SMA CLINICAL DATA REGISTRY. THE CLINICAL DATA REGISTRY IS CENTRAL TO COLLECTING REAL WORLD DATA AND ESTABLISHING EVIDENCE TO GUIDE SMA CARE BEST PRACTICE THAT WILL BE AVAILABLE AND DISTRIBUTED NATIONALLY. THE CLINICAL DATA REGISTRY HAS PROGRESSIVELY GROWN, AND MORE THAN 1000 PATIENTS ARE ENROLLED. ADDITIONAL DATA ELEMENTS HAVE BEEN ADDED TO BETTER ANALYZE SMA TREATMENT USE. CURE SMA COLLABORATES WITH STATE PUBLIC HEALTH LABS AND LEGISLATURES TO ADVOCATE FOR SMA NEWBORN SCREENING IMPLEMENTATION THROUGHOUT THE US. CURRENTLY 48 STATES AND WASHINGTON, DC SCREEN NEWBORNS FOR SMA FACILITATING EARLY PRESYMPTOMATIC TREATMENT. THIS REPRESENTS 99% OF ALL INFANTS BORN IN THE U.S. CURE SMA CO-CREATED TWO NEW HEALTHCARE PROVIDER ENDURING CONTINUING MEDICAL EDUCATION PROGRAMS IN ADDITION TO THE IN-PERSON CURE SMA CLINICAL CARE SESSION OFFERED IN JUNE 2023. 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 $3,688,752 · Grants $2,091,809 · Revenue $1,187,027
-
WE HOSTED THE 2023 ANNUAL SMA CONFERENCE IN ORLANDO, FL, WITH OVER 3,000 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 $5,163,619 · Grants $76,027 · Revenue $2,849,730
As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.
Listed in Part VII
-
Allyson HenkelALLYSON HENKEL
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Amy MedinaAMY MEDINA
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Annie KennedyANNIE KENNEDY
DIRECTOR (THROUGH 12/31/22)
- Total calculated
- $0
- Hours/week
- 2
-
Brad NunemakerBRAD NUNEMAKER
TREASURER
- Total calculated
- $0
- Hours/week
- 2
-
Brian SnyderBRIAN SNYDER
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Corey BraastadCOREY BRAASTAD
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Edmund LeeEDMUND LEE
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Gillian MullinsGILLIAN MULLINS
SECRETARY
- Total calculated
- $0
- Hours/week
- 2
-
Jaclyn GreenwoodJACLYN GREENWOOD
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Kelly ColeKELLY COLE
DIRECTOR (THROUGH 3/7/23)
- Total calculated
- $0
- Hours/week
- 2
-
Kelly JankowskiKELLY JANKOWSKI
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Nick FarrellNICK FARRELL
BOARD CHAIR
- Total calculated
- $0
- Hours/week
- 15
-
Peter StatilePETER STATILE
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Rob LockwoodROB LOCKWOOD
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Robert GrahamROBERT GRAHAM
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Shannon ShryneSHANNON SHRYNE
DIRECTOR (THROUGH 12/31/22)
- Total calculated
- $0
- Hours/week
- 2
-
Shannon ZerzanSHANNON ZERZAN
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Spencer PerlmanSPENCER PERLMAN
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Tom MurrayTOM MURRAY
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Bakri ElsheikhBAKRI ELSHEIKH
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Diana CastroDIANA CASTRO
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Kaleen RobinsonKALEEN ROBINSON
DIRECTOR
- Total calculated
- $0
- Hours/week
- 2
-
Kenneth HobbyKENNETH HOBBY
PRESIDENT
- Total calculated
- $345,151
- From this org
- $326,805
- From related orgs
- $0
- Other
- $18,346
- Hours/week
- 70
Schedule J breakdown matched by us
- Base
- $326,805
- Bonus
- $0
- Other
- $0
- Deferred
- $11,760
- Nontaxable benefits
- $6,586
- Filer's total
- $345,151
-
Marline PaganMARLINE PAGAN
CHIEF OPERATING OFFICER
- Total calculated
- $218,629
- From this org
- $191,950
- From related orgs
- $0
- Other
- $26,679
- Hours/week
- 60
Schedule J breakdown matched by us
- Base
- $191,950
- Bonus
- $0
- Other
- $0
- Deferred
- $7,838
- Nontaxable benefits
- $18,841
- Filer's total
- $218,629
-
Mary SchrothMARY SCHROTH
CHIEF MEDICAL OFFICER
- Total calculated
- $277,229
- From this org
- $258,991
- From related orgs
- $0
- Other
- $18,238
- Hours/week
- 60
Schedule J breakdown matched by us
- Base
- $258,991
- Bonus
- $0
- Other
- $0
- Deferred
- $10,471
- Nontaxable benefits
- $7,767
- Filer's total
- $277,229
-
Colleen McCarthy O'TooleCOLLEEN MCCARTHY O'TOOLE
SR VICE PRESIDENT, COMMUNITY SUPPORT
- Total calculated
- $171,265
- From this org
- $146,384
- From related orgs
- $0
- Other
- $24,881
- Hours/week
- 60
Schedule J breakdown matched by us
- Base
- $146,384
- Bonus
- $0
- Other
- $0
- Deferred
- $6,226
- Nontaxable benefits
- $18,655
- Filer's total
- $171,265
-
Maynard FrieszMAYNARD FRIESZ
VICE PRESIDENT, POLICY & A
- Total calculated
- $146,460
- From this org
- $128,810
- From related orgs
- $0
- Other
- $17,650
- Hours/week
- 50
-
Jackie GlascockJACKIE GLASCOCK
VICE PRESIDENT OF RESEARCH
- Total calculated
- $128,312
- From this org
- $122,504
- From related orgs
- $0
- Other
- $5,808
- Hours/week
- 40
-
Michelle CastleMICHELLE CASTLE
VICE PRESIDENT OF COMPLIANCE DEVELOPMENT
- Total calculated
- $127,470
- From this org
- $120,327
- From related orgs
- $0
- Other
- $7,143
- Hours/week
- 40
-
Pamela SwenkPAMELA SWENK
CHIEF OF STAFF OFFICER
- Total calculated
- $126,007
- From this org
- $117,371
- From related orgs
- $0
- Other
- $8,636
- Hours/week
- 40
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
-
PNCR NETWORK
-
LELAND STANFORD JUNIOR UNIVERSITY
$245,000
PNCR NETWORK
-
$240,000
PNCR NETWORK
-
$210,000
PNCR NETWORK
-
CHILDREN'S HOSPITAL OF PHILADELPHIA
$175,000
PNCR NETWORK
-
$99,086
BASIC RESEARCH
-
$79,259
CARE CENTER NETWORK
-
BRIGHAM AND WOMEN'S HOSPITAL INC
$75,000
DRUG DISCOVERY
-
CARE CENTER NETWORK
-
$74,600
CARE CENTER NETWORK
The 10 largest by cash amount. The API serves every itemized grant.
Provenance
- Return type
- form_990
- Tax year
- 2022
- Filed
- 15 November 2023
- IRS schema version
- 2022v5.0
- Source object
- 202343199349308894
Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.
The source document this was parsed from is served over the API, which is where bulk and document access live.