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Csnk2a1 Foundation

EIN 82-4220939 · Burlingame, CA

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthStrong95 out of 100GovernanceFair59 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

FOCUS ON FINDING A CURE FOR OKUR-CHUNG NEURODEVELOPMENTAL SYNDROME AND ENSURING INDIVIDUALS HAVE THE OPPORTUNITIES AND SUPPORT NECESSARY FOR HAPPY AND FULL LIVES.

Income
$754,167
Spending
$596,714
Spent on programs
70%
Reserves
29.3 months of spending
Largest source of income
donations and private grants, 79%
Employees
0
Volunteers
70

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 95 out of 100. Higher than 78% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover 29.3 months of spending.

  • Debt

    20 of 20

    It owes 1% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 21% of income.

  • Income trend

    10 of 15

    Income fell 6% on the year before.

  • Spending floor

    15 of 15

    70% of spending went to programs and raising each dollar of donations cost 10 cents.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Fair: 59 out of 100. Higher than 26% of charities in its peer group (diseases, $250k to $1m).

  • Independent board

    25 of 25

    8 of 8 voting board members are independent.

  • Conflict of interest policy

    0 of 15

    Reports no written conflict of interest policy.

  • Whistleblower policy

    0 of 8

    Reports no written whistleblower policy.

  • Record keeping policy

    0 of 7

    Reports no written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Independent check of accounts

    6 of 15

    Its accounts were not audited or reviewed by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2024, 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 (1)
  1. $417,621 spent. SEE STATEMENT 2024 CSNK2A1 FOUNDATION END OF YEAR IMPACT REPORT FOUNDATION OVERVIEW - OCNDS DISCOVERED: 2016 | FOUNDATION ESTABLISHED: 2018 - MISSION: FOCUSED ON FINDING A CURE FOR OKUR-CHUNG NEURODEVELOPMENTAL SYNDROME AND ENSURING AFFECTED INDIVIDUALS HAVE THE OPPORTUNITIES AND SUPPORTS NECESSARY FOR HAPPY AND FULL LIVES. - HALLMARK SYMPTOMS: SPEECH DELAY OR INABILITY TO SPEAK, GLOBAL DEVELOPMENTAL DELAY, INTELLECTUAL DISABILITY, AUTISM SPECTRUM DISORDER TRAITS, POSTNATAL SHORT STATURE, BRAIN MRI ABNORMALITIES, HYPOTONIA, SEIZURES, AND SLEEP ISSUES. - OCNDS AFFECTED EVERY PATIENT DIFFERENTLY. THE SYMPTOMS RANGE FROM MILD TO SEVERE. - GLOBAL REACH: 291 FAMILIES REGISTERED WITH THE FOUNDATION (+73) SPANNING 42 COUNTRIES (+8) AND 25 LANGUAGES (+3). - ALL (+) ARE INCREASES SINCE DECEMBER 2023 - 6 KEY FOCUS AREAS: RESEARCH, ADVOCACY, AWARENESS, FUNDRAISING, FAMILY SUPPORT, AND CAPACITY BUILDING. RESEARCH. RESEARCH IS THE CORNERSTONE OF ADVANCING UNDERSTANDING, TREATMENT, AND, ULTIMATELY, A CURE FOR OCNDS. SUPPORTING SCIENTIFIC STUDIES AND DATA COLLECTION HELPS UNCOVER THE MECHANISMS OF THE CONDITION AND IDENTIFY THERAPEUTIC OPPORTUNITIES. - SIMONS SEARCHLIGHT - THIS IS OUR NATURAL HISTORY STUDY THROUGH THE SIMONS FOUNDATION AUTISM RESEARCH INITIATIVE. THEY COLLECT FAMILY, MEDICAL, DEVELOPMENTAL, AND BEHAVIORAL INFORMATION. INFORMATION IS SYNTHESIZED AND RESULTS ARE PROVIDED BACK TO FAMILIES. DATA IS THEN SHARED WITH QUALIFIED RESEARCHERS. THIS STUDY IS CRUCIAL TO BETTER UNDERSTAND HOW OCNDS AFFECTS PEOPLE OVER TIME. - WE ENDED 2024 WITH: - 147 INDIVIDUALS REGISTERED (+34) - 141 INDIVIDUALS FULLY CONSENTED (+35) - 126 INDIVIDUALS WITH LAB REPORTS APPROVED (+35) - 92 INDIVIDUALS WITH COMPLETED MEDICAL HISTORY INTAKE SURVEYS (+21) - THIS IS IMPORTANT AS THIS INTAKE IS THE MAIN DATASET THAT RESEARCHERS USE TO TRY AND BETTER UNDERSTAND OCNDS - 30 INDIVIDUALS WHO SUBMITTED BLOOD SAMPLES (+7) - THESE ARE IMPORTANT AS THEY PROVIDE CRUCIAL SAMPLES FOR RESEARCHERS AND SIMONS CAN GENERATE A SPECIAL TYPE OF CELL LINE, CALLED AN INDUCED PLURIPOTENT STEM CELL (IPSC) LINE FROM THE BLOOD SAMPLES - 109 SURVEYS WERE COMPLETED BY PARTICIPANTS - OCNDS PUBLICATIONS - 2024 ENDED WITH 38 (+9) TOTAL PUBLICATIONS ABOUT OCNDS/RELATED TO OCNDS - FIRST FOUNDATION PUBLICATION: RUSHING GV, SILLS J. PATIENT ORGANIZATION PERSPECTIVE: A RESEARCH ROADMAP FOR OKUR-CHUNG NEURODEVELOPMENTAL SYNDROME. THER ADV RARE DIS. 2024 - RESEARCH EXPLAINED HERE - 1ST MOUSE MODEL OF OCNDS CHARACTERIZED: MISSENSE MUTATION IN THE ACTIVATION SEGMENT OF THE KINASE CK2 MODELS OKUR-CHUNG NEURODEVELOPMENTAL DISORDER AND ALTERS THE HIPPOCAMPAL GLUTAMATERGIC SYNAPSE - OTHERS PUBLICATIONS (LINKED TO THE CORRESPONDING RESEARCH EXPLAINED): - OKUR-CHUNG NEURODEVELOPMENTAL SYNDROME: IMPLICATIONS FOR PHENOTYPE AND GENOTYPE EXPANSION - PATIENT WITH A HETEROZYGOUS PATHOGENIC VARIANT IN CSNK2A1 GENE: A NEW CASE TO UPDATE THE OKUR-CHUNG NEURODEVELOPMENTAL SYNDROME - INHERITED LOSS OF FUNCTION VARIANT IN CSNK2A1: THE OLDEST REPORTED CASES OF OKUR-CHUNG SYNDROME IN A SINGLE FAMILY - IMPROVEMENT OF VARIANT RECLASSIFICATION IN GENETIC NEURODEVELOPMENTAL CONDITIONS - EXPANDING THE PHENOTYPIC SPECTRUM OF CSNK2A1-ASSOCIATED OKUR-CHUNG NEURODEVELOPMENTAL SYNDROME - QUANTIFYING NEUROBEHAVIORAL PROFILES ACROSS NEURODEVELOPMENTAL GENETIC SYNDROMES AND IDIOPATHIC NEURODEVELOPMENTAL DISORDERS - MOTOR PHENOTYPES ASSOCIATED WITH GENETIC NEURODEVELOPMENTAL DISORDERS - RESEARCH EXPLAINED COMING SOON! - PLANNING OUR 2025 SCIENTIFIC AND FAMILY CONFERENCE - JULY 17-20, 2025 - LOCATION: EMBASSY SUITES BY HILTON DENVER CENTRAL PARK LOCATED AT 4444 N. HAVANA STREET, DENVER, CO 80239 - ARE YOU A RESEARCHER WANTING TO ATTEND? EMAIL DR. RUSHING (GABRIELLE@CSNK2A1FOUNDATION.ORG) - FAMILY REGISTRATION COMING SOON! - GRANTS - APPLIED FOR 7 HIGHLY COMPETITIVE GRANTS; RECEIVED 2 GRANTS - CHAN ZUCKERBERG INITIATIVE RARE AS ONE CYCLE 3: $800,000 OVER 5 YEARS - 2024 #RAREIS GLOBAL ADVOCATE GRANT: $5,000 TO TRANSLATE KEY RESOURCES FOR FAMILIES - ONE GRANT APPLICATION IS PENDING - RESEARCH PROJECTS - AWARDED 1 NEW RESEARCH GRANT: - UNRAVEL BIOSCIENCES - NASAL SWABS FROM INDIVIDUALS WITH CSNK2A1 K198R VARIANT - AIMS: THEY WILL GENERATE RNA SEQUENCING DATA FROM THE NASAL SWABS THAT WILL BE USED TO PREDICT DRUGS AND THERAPEUTIC MECHANISMS USING THE BIONAV PLATFORM. THIS WILL GENERATE THE FIRST PRIMARY CLINICAL MOLECULAR DATASET FOR CSNK2A1. - STATUS: AWAITING SAMPLE SUBMISSION FROM ALL FAMILIES. WE EXPECT DATA IN Q1 OF 2025. - FUNDRAISED TO SUPPORT 1 NEW RESEARCH GRANT THROUGH THE MILLION DOLLAR BIKE RIDE: - DR. HALIM LOUKIL - DECIPHERING PERTURBATIONS OF PRIMARY CILIA IN OKUR-CHUNG NEURODEVELOPMENTAL DISORDER. - DR. LOUKIL WILL FURTHER INVESTIGATE THE MECHANISMS BY WHICH VARIANTS IN CSNK2A1 AFFECT CILIA BIOLOGY; CILIA ARE IMPORTANT FINE HAIRLIKE PROJECTIONS FROM CERTAIN CELLS THAT HAVE VARYING FUNCTIONS IN OUR BODIES. THIS PROJECT WILL HELP RESEARCHERS BETTER UNDERSTAND WHAT DIFFERENT MUTATIONS IN CSNK2A1 DO IN THE BODY AND WHAT SIGNALING PATHWAYS MAY BE DISRUPTED; THIS WILL HELP THE FOUNDATION BETTER UNDERSTAND WHAT THERAPEUTIC APPROACHES TO PURSUE. - MADE STRIDES WITH 3 ADDITIONAL GRANTS FUNDED AT THE END OF 2023: - DR. CLEMENT CHOW - DRUG REPURPOSING SCREEN USING OCNDS FLY MODEL - AIMS: DR. CHOW UTILIZED THE PRESTWICK CHEMICAL LIBRARY CONSISTING OF 1,520 COMPOUNDS USING A FLY MODEL OF OCNDS WHERE THE LEVELS OF CK2 PROTEIN ARE REDUCED (REPRESENTING INDIVIDUALS WITH DELETION VARIANTS OR VARIANTS IN CSNK2A1 WHERE THERE IS A LOSS OF NORMAL FUNCTION). USING THE FLY EYE STRUCTURE AS A READOUT OF DRUG EFFECTS, HIS LAB WILL GENERATE A LIST OF 'HITS' (COMPOUNDS) THAT IMPROVE THE FLY'S SYMPTOMS. - STATUS: TOP 12 HITS ARE BEING VALIDATED. ONCE COMPLETE, WE MAY TEST COMPOUNDS IN OTHER MODELS (E.G., CELL LINES, MOUSE MODEL). - DR. MATT HUENTELMAN - CHARACTERIZATION OF CSNK2A1 DISEASE CAUSING VARIANTS IN TWO-DIMENSIONAL DIFFERENTIATED NEURONS - AIMS: CHARACTERIZE THE GENOTYPE-PHENOTYPE RELATIONSHIP FOR SEV

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. 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.

  2. 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 November 6, 2026.

  3. 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.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2024.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since March 2018.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. 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 November 4, 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.