Form 990 for tax year 2025

Totals

Total revenue

$595,048

Total expenses

$480,745

Contributions and grants received

$588,110

Grants paid

$78,402

Program service revenue

$0

Investment income

$5,903

Other revenue

$1,035

Total assets, end of year

$335,915

Total liabilities, end of year

$75,790

Net assets or fund balances, end of year

$260,125

Program services expenses (Part IX)

$334,091

Management and general expenses

$146,654

Fundraising expenses

$0

Program service expenses (Part III)

$334,091

Program services were 69.5% 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.

Mission and programs · 2025

• EDUCATIONAL EVENTS & PROGRAMS: WE HAVE AN INTERNATIONAL MOGAD PATIENT SUMMIT AND A US MOGAD PATIENT SUMMIT PROGRAM THAT PROVIDES EDUCATION FOR MOGAD PATIENTS WORLDWIDE AND IN THE US. PATIENTS CAN ATTEND IN PERSON OR SEE THE EVENT LIVESTREAMED. THEY CAN ALSO PARTICIPATE IN THE EVENT BY ASKING QUESTIONS TO THE PRESENTERS. PRESENTERS INCLUDE TOP EXPERTS IN THE DISEASE WORLDWIDE. THESE PROGRAMS ARE CURRENTLY BASED IN THE US AND STREAMED LIVE GLOBALLY. WE ALSO PROVIDE A WEBSITE AND YOUTUBE CHANNEL FILLED WITH WRITTEN MATERIALS, INFOGRAPHICS AND VIDEOS AIMED AT EDUCATING PATIENTS, CAREGIVERS AND MEDICAL PROFESSIONALS. IN ADDITION, WE HOLD A BLOG SPACE FOR ARTICLES WRITTEN TO EDUCATE PATIENTS ON RESEARCH ARTICLES AND PATIENT EXPERIENCE SO THAT THEY CAN KNOW WHAT OTHERS HAVE GONE THROUGH, INFORMING THEM BETTER ON WHAT TO EXPECT WITH DISEASE MANAGEMENT. WE ALSO PROVIDE A GREAT DEAL OF PRINTED MATERIALS FOR PATIENTS THAT WE DISTRIBUTE AT EVENTS AND SEND TO CLINICS TREATING MOGAD ALL OVER THE WORLD.

  Expenses $231,261

• RESEARCH PROGRAMS: WE WORK TO AFFECT RESEARCH IN MOGAD THROUGH PATIENT PARTICIPATION IN SURVEYS IN COLLABORATION WITH REPUTABLE RESEARCHERS/INDUSTRY PARTNERS TO HELP GUIDE RESEARCH TO BETTER UNDERSTAND THE PATIENT EXPERIENCE GIVEN THAT THIS IS A NEWLY DISCOVERED DISEASE THAT REQUIRES BETTER UNDERSTANDING OF WHAT SYMPTOMS PATIENTS EXPERIENCE AND HOW THEIR DISEASE MANIFESTS OVER TIME. WE ALSO USE THESE SURVEYS TO UNDERSTAND WHAT THE PATIENT POPULATION NEEDS IN VARIOUS WORLD AREAS, INCLUDING UNDERSERVED COMMUNITIES. WE ALSO PROVIDE, WHEN AVAILABLE, FUNDS WE RAISED AS GRANTS FOR ADJUDICATED RESEARCH AS PART OF OUR RESEARCH FOR RARE PROGRAM, WHICH COVERS TWO TYPES OF GRANTS: ONE THAT FUNDS RESEARCH IN IMPACTFUL AREAS THAT WILL PROVIDE SEED DATA FOR LARGER GRANTS AVAILABLE AT INSTITUTIONS LIKE NIH, AND ANOTHER THAT FUNDS INFRASTUCTURE, SUCH AS REGISTRIES FOR DATA COLLECTION AND MANAGEMENT.

  Expenses $81,975 · Grants $78,402

• SUPPORT: WE PROVIDE SUPPORT GROUPS THROUGH SOCIAL MEDIA CHANNELS AS WELL AS SUPPORT FOR SMALL GROUPS VIA ZOOM. WE USE THESE GROUPS TO CONNECT PATIENTS TO OTHERS GOING THROUGH THE SAME THING THEY ARE SINCE THEY WILL HAVE DIFFICULTY FORMING LOCAL GROUPS TO DO THIS AS MOGAD IS A RARE DISEASE. WE ALSO PROVIDE SUPPORT EVENTS WHERE MEDICAL EXPERTS GATHER TO DO A Q&A FOR PATIENTS REGULARLY THROUGHOUT THE YEAR, GIVING PATIENTS AN OPPORTUNITY TO GET SUPPORT BACKED BY EXPERT MEDICAL ADVICE IN A GENERAL MANNER. IN ADDITION, WE HAVE A CHILDREN'S AMBASSADOR PROGRAM FOR KIDS LED BY PARENTS TO PROVIDE A SUPPORT NETWORK FOR KIDS UNDER 18. WE ALSO HAVE A PEER-TO-PEER PROGRAM CALLED MOGMENTORS THAT CONNECTS NEW PATIENTS WITH VOLUNTEERS WHO HAVE GONE THROUGH A GOOD AMOUNT OF TIME LIVING WITH THE DISEASE AND CAN HELP OTHERS UNFAMILIAR.

  Expenses $20,855

• PROGRAM SERVICE EXPENSES: 0, GRANTS AND ALLOCATIONS: 0, REVENUE: 0 POLICY PROGRAMS: OUR POLICY PROGRAMS ARE AIMED AT AFFECTING POLICY AND BRINGING AWARENESS TO MOGAD WORLDWIDE. EXAMPLES OF THIS INCLUDE OUR WORK TO ADVOCATE FOR INCREASED FUNDING AT NINDS/NIH AND THE CREATION OF A ICD-10 CODE WITH THE CDC AND AND ICD-11 CODE WITH THE WHO. OTHER EFFORTS INCLUDE WORK TO ENCOURAGE LAWMAKERS TO RECOGNIZE MOGAD AS A DISEASE SO THAT PATIENTS WITH THE INVISIBLE DISABILITY CAUSED BY THE DISEASE WHO CANNOT WORK CAN GET THEIR DISABILITY APPROVED THOUGH FEDERAL/STATE SOCIAL SECURITY MECHANISMS.

As filed on the 2025 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

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.

Grants on this return

• MASSACHUSETTS GENERAL BUSINESS OFFICE

  $24,605

  RESEARCH STUDY

• YALE UNIVERSITY

  $17,767

  RESEARCH STUDY

Provenance

Return type

form_990

Tax year

2025

Filed

7 August 2026

IRS schema version

2025v4.0

Source object

202602229349300520

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