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Wishes for Elliott

EIN 47-1822559 · Washington, DC

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

LegitimacyPassesRegistration and standingFinancial healthStrong93 out of 100GovernanceFair61 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

WE WORK COLLABORATIVELY TO ACCELERATE THE PACE OF SCIENCE ON SCN8A AND RELATED DISORDERS IN ORDER TO BRING HOPE AND IMPROVED OUTCOMES FOR ALL THOSE LIVING WITH RARE EPILEPSIES AND THEIR FAMILIES.

Income
$902,175
Spending
$496,581
Spent on programs
58%
Reserves
19.5 months of spending
Largest source of income
donations and private grants, 95%
Employees
3
Highest pay
$100,000, executive dir.

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: 93 out of 100. Higher than 69% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover 19.5 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 45% of income.

  • Income trend

    15 of 15

    Income rose 54% on the year before.

  • Spending floor

    8 of 15

    58% of spending went to programs and raising each dollar of donations cost 0 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: 61 out of 100. Higher than 30% of charities in its peer group (diseases, $250k to $1m).

  • Independent board

    25 of 25

    8 of 9 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.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • 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 (3)
  1. $218,250 spent. RESEARCH : SINCE 2015, THE INTERNATIONAL SCN8A ALLIANCE HAS HELPED BUILD THE CORE OF RESEARCHERS COMMITTED TO FINDING ANSWERS BY FUNDING EARLY CAREER RESEARCHERS. WITH 9 OF OUR GRANTEES STILL FOCUSED ON SCN8A AND RELATED RESEARCH AFTER THEIR GRANTS ARE COMPLETED, THESE EARLY CAREER RESEARCHERS ARE OPENING THEIR LABS AND CONDUCTING NOVEL RESEARCH ON A RANGE OF EMERGING AND ENTRENCHED ISSUES RELATED TO SCN8A AND RARE EPILEPSIES LEADING TO MILLIONS IN FOLLOW UP. PLEASE SEE SCHEDULE O FOR ADDITIONAL INFORMATION ON RESEARCH ACCOMPLISHMENTS. WE HOST SCIENTIFIC MEETINGS BRINGING TOGETHER CAREGIVERS, CLINICIANS, RESEARCHERS AND INDUSTRY TO ADVANCE CARE AND TREATMENTS INCLUDING RECENT CRITICAL ACTIVITIES TO PUBLISH THE FIRST TREATMENT GUIDELINES AND RESEARCH ROADMAP.
  2. $66,048 spent. EDUCATION: WE WORK TO IMPROVE THE UNDERSTANDING OF SCN8A BY ENSURING THAT STAKEHOLDERS FOSTER RELATIONSHIPS BREAK DOWN BARRIERS AND COLLABORATE TO FIND TREATMENTS AND IMPROVE THE QUALITY OF LIFE FOR ALL. EDUCATION IS A TWO WAY STREET. WE LEARN FROM FAMILIES AND WE PROVIDE OPPORTUNITIES FOR FAMILIES TO ENGAGE WITH RESEARCHERS PHARMA CLINICIANS REGULATORS AND BEYOND. WE BREAK DOWN SILOS THAT STALL PROGRESS AND ENSURE ALL ARE WORKING WITH THE UTMOST SPEED TO REACH OUR GOAL A CURE FOR OUR CHILDREN. WE HOST REGULR ONLINE MEETINGS WITH FAMILIES TO EDUCATE THEM ON THE EMERGING SCIENCE AND EMPOWER THEM TO BE THE MOST INFORMED ADVOCATES THEY CAN BE. IN OUR WORK ACROSS THE DEES VIA DEE-P CONNECTIONS, WE HAVE HOSTED MORE THAN 80 WEBINARS TO HELP FAMILIES NAVIGATE CARING FOR A LOVED ONE WITH MAJOR MEDICAL COMPLEXITIES AND FIND SUPPORT.
  3. $5,395 spent. ADVOCACY : OUR EFFORTS, SPANNING BOTH THE BROAD RANGE OF DEVELOPMENTAL AND EPILEPTIC ENCEPHALOPATHIES (DEES) AND SCN8A, INCLUDE DIVERSE ADVOCACY EFFORTS TO BOTH LEGISLATIVE AND ADMINISTRATIVE POLICYMAKERS. OUR LEGISLATIVE ADVOCACY INCLUDES MULTIPLE EFFORTS ADDRESSING PENDING LEGISLATIVE ACTIONS AND APPROPRIATIONS THAT AFFECT SUPPORTED RESEARCH AND SUPPORT FOR FAMILIES I.E., PROPOSED MEDICAID CHANGES AS WELL AS ADVOCATING FOR ADDITIONAL FEDERAL FUNDING FOR TRANSLATIONAL EPILEPSY RESEARCH. TO ENSURE OUR COMMUNITY IS HEARD, WE HAVE ALSO PROVIDED MULTIPLE COMMENTS TO FEDERAL AGENCIES, INCLUDING THE FDA, NIH, AND CDC, OFTEN BUT NOT EXCLUSIVELY IN RESPONSE TO PUBLISHED RFIS. A SIGNIFICANT EFFORTS HAVE INCLUDED A SUBMISSION OF DATA AND FAMILY STORIES ON SCN8A AND A CROSS-DEE PATIENT LISTENING SESSION WITH THE FDA. ADDITIONALLY, WE HAVE HELD A CRITICAL PATH INNOVATION MEETING, IN COLLABORATION WITH OUR INCHSTONE PROJECT RESEARCHERS, TO ENSURE APPROPRIATE TOOLS EXIST TO MEASURE CHANGE IN THOSE PROFOUNDLY IMPACTED BY DISEASES IN CLINICAL TRIALS.

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? Worth knowing.

    Status was revoked on May 15, 2019 for not filing returns for three years, and reinstated on May 15, 2019.

    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 December 2019.

    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.