Families of Sma
Public records show a registered, tax-exempt organization in good standing.
What it says it does
OUR MISSION IS TO DRIVE RESEARCH FOR TREATMENTS AND A CURE FOR SMA, AND TO SUPPORT AND EMPOWER EVERYONE IMPACTED BY SMA TODAY.
- Income
- $15.2 million
- Spending
- $14.0 million
- Spent on programs
- 77%
- Reserves
- 2.2 months of spending
- Largest source of income
- donations and private grants, 50%
- Employees
- 53
- Volunteers
- 6,800
- Highest pay
- $348,806, president
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Fair: 65 out of 100. Higher than 42% of charities in its peer group (diseases, $10m to $100m).
Reserves
10 of 35Spendable reserves would cover 2.2 months of spending.
Debt
10 of 20It owes 30% of what it owns.
Living within its means
15 of 15Income exceeded spending by 8% of income.
Income trend
15 of 15Income rose 3% on the year before.
Spending floor
15 of 1577% of spending went to programs and raising each dollar of donations cost 24 cents.
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 100 out of 100. Higher than 36% of charities in its peer group (diseases, $10m to $100m).
Independent board
25 of 2524 of 24 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (3)
- $4.8 million spent. 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
- $5.4 million spent. 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, 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 FIVE IN CLINICAL TRIALS. CURRENTLY, TWO INVESTIGATIONAL DRUGS ARE AWAITING FDA APPROVAL.CURE SMA HAVE THREE PRIMARY DATABASES FOR DATA COLLECTION: A PATIENT-REPORTED DATABASE WITH DATA FROM OVER 11,000 IMPACTED INDIVIDUALS WORLDWIDE THAT ALSO INCORPORATES LONGITUDINAL DATA FROM OUR ANNUAL COMMUNITY UPDATE SURVEY; THE SMA CLINICAL DATA REGISTRY (CDR) THAT CONTAINS ELECTRONIC MEDICAL RECORD (EMR) SOURCED DATA FROM U.S. BASED SMA CARE CENTER NETWORK SITES; AND THE NEWBORN SCREENING REGISTRY WITH DATA FROM PARENTS OF BABIES WITH SMA THAT WERE IDENTIFIED THROUGH STATEWIDE SMA NEWBORN SCREENING. 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 2024 REPORT AVAILABLE ON OUR WEBSITE. DATA COLLECTED IS ALSO SHARED IN PEER-REVIEWED LITERATURE. CURE SMA PUBLISHED "SMA COMMUNITY PRIORITIES FOR FUTURE DRUG THERAPIES: CROSS-SECTIONAL SURVEY FINDING REPRESENTING 410 ADULTS WITH SMA" IN NEUROLOGY AND THERAPY IN JUNE 2025. IN ADDITION, CURE SMA SUPPORTS THE SMA INDUSTRY COLLABORATION. ESTABLISHED IN 2016, THE COLLABORATION IS A MULTI-FACETED PARTNERSHIP THAT BRINGS TOGETHER PHARMACEUTICAL COMPANIES, CURE SMA, AND OTHER NONPROFIT ORGANIZATIONS TO SHARE INFORMATION, IDEAS, AND DATA. THE SMA INDUSTRY COLLABORATION WORKS TOGETHER TO ADDRESS SCIENTIFIC, CLINICAL, AND REGULATORY TOPICS THAT ARE CRITICAL TO ADVANCING DRUG DEVELOPMENT IN SMA AND WILL BENEFIT THE BROADER SMA COMMUNITY. CURE SMA CO-CREATED A NEW HEALTHCARE PROVIDER ENDURING CONTINUING MEDICAL EDUCATION PROGRAM IN ADDITION TO THE IN-PERSON CURE SMA CLINICAL CARE SESSION OFFERED IN JUNE 2025. RESOURCES WERE ALSO DEVOTED TO MAINTAINING WEBSITE LISTINGS OF SMA NEWBORN SCREENING REFERRAL CENTERS AND TREATMENT CENTERS THAT PROVIDE FDA-APPROVED SMA TREATMENTS.
- $588,940 spent. WE HOSTED THE 2025 ANNUAL SMA CONFERENCE IN ANAHEIM, CA WITH OVER 2,739 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 AND CLINICAL CARE CONFERENCE CREATES OPEN COMMUNICATION OF EARLY, UNPUBLISHED SCIENTIFIC DATA, ACCELERATING THE PACE OF RESEARCH. THE MEETING ALSO FURTHERS RESEARCH BY BUILDING PRODUCTIVE COLLABORATIONSINCLUDING 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.
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending June 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since February 1985.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.
Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.