Totals
- Total revenue
- $570,773
- Total expenses
- $867,236
- Contributions and grants received
- $289,283
- Grants paid
- $0
- Program service revenue
- $241,089
- Investment income
- $40,401
- Other revenue
- $0
- Total assets, end of year
- $9,688,644
- Total liabilities, end of year
- $41,336
- Net assets or fund balances, end of year
- $9,647,308
- Program services expenses (Part IX)
- $636,178
- Management and general expenses
- $124,704
- Fundraising expenses
- $106,354
- Program service expenses (Part III)
- $636,178
Program services were 73.4% 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.
-
1f · All other contributions, gifts and grants
$289,283
-
2a · Program service revenue: SERVICE FEE REVENUE
total $241,089 · related or exempt $241,089
-
3 · Investment income
total $40,401 · excluded $40,401
Functional expenses
Part IX, the statement of functional expenses.
-
5 · Compensation of officers, directors and key employees
total $230,695 · program services $166,788 · management and general $31,752 · fundraising $32,155
-
7 · Other salaries and wages
total $250,506 · program services $181,110 · management and general $34,479 · fundraising $34,917
-
8 · Pension plan contributions
total $5,230 · program services $3,781 · management and general $720 · fundraising $729
-
9 · Other employee benefits
total $15,338 · program services $11,089 · management and general $2,111 · fundraising $2,138
-
10 · Payroll taxes
total $36,113 · program services $26,628 · management and general $4,475 · fundraising $5,010
-
11c · Fees: accounting
total $10,939 · management and general $10,939
-
11g · Fees: other
total $225,890 · program services $219,953 · management and general $1,848 · fundraising $4,089
-
12 · Advertising and promotion
total $59,712 · program services $20,709 · management and general $20,486 · fundraising $18,517
-
13 · Office expenses
total $5,218 · program services $110 · management and general $5,048 · fundraising $60
-
14 · Information technology
total $4,861 · management and general $2,952 · fundraising $1,909
-
17 · Travel
total $11,150 · program services $4,343 · management and general $5,560 · fundraising $1,247
-
19 · Conferences, conventions and meetings
total $11,584 · program services $1,667 · management and general $4,334 · fundraising $5,583
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $148,526 · end of year $108,152
-
2 · Savings and temporary cash investments
end of year $64,034
-
3 · Pledges and grants receivable
end of year $14,000
-
9 · Prepaid expenses and deferred charges
beginning of year $3,515 · end of year $3,515
-
11 · Investments: publicly traded securities
beginning of year $1,119,610 · end of year $748,943
-
14 · Intangible assets
beginning of year $8,750,000 · end of year $8,750,000
-
17 · Accounts payable and accrued expenses
beginning of year $95,757 · end of year $41,336
-
27 · Net assets without donor restrictions
beginning of year $9,925,894 · end of year $9,647,308
Mission and programs · 2023
Mission
ODLYIA'S MISSION IS TO FACILITATE THE RESEARCH OF GENETICS, GENETIC THERAPIES AND SAFE AND EFFECTIVE TREATMENTS THAT ADDRESS RARE AND ULTRA-ARE DISEASES, INCLUDING TO (I) RESEARCH AND DEVELOP METHODOLOGIES FOR MORE EFFECTIVE AND EFFICIENT DEVELOPMENT OF THERAPIES AND TREATMENTS OF RARE AND ULTRA-RARE DISEASES INCLUDING, BUT NOT LIMITED TO, THE CONDUCT AND OVERSIGHT OF CLINICAL TRIALS, (II) COMPILE AND DISSEMINATE SCIENTIFIC LITERATURE THAT PROMOTES AND ATTRACTS RESOURCES FOR RESEARCH AND THE DEVELOPMENT OF THERAPIES AND TREATMENTS THAT ADDRESS RARE AND ULTRA-RARE DISEASES, (III) DEVELOP BEST PRACTICES IN THE FIELD OF RESEARCH AND THE DEVELOPMENT OF TREATMENTS OF RARE AND ULTRA-RARE DISEASES AND (IV) ENGAGE IN AND CARRY ON ANY SUCH OTHER ACTIVITIES IN FURTHERANCE OF SUCH PURPOSES AS NONPROFIT CORPORATIONS ORGANIZED UNDER THE DELAWARE GENERAL CORPORATION LAW MAY CONDUCT, BUT ONLY TO THE EXTENT THAT SUCH ACTIVITIES SHALL BE PERMITTED UNDER SECTION 50L(C)(3) OF THE CODE.
Activities or mission (Part I)
ODLYIA UTILIZES A UNIQUE, NON-PROFIT MODEL TO ACCELERATE THE DEVELOPMENT OF GENE THERAPIES FROM PEOPLE WITH RARE DISEASE, CHANGING THE WAY TREATMENTS ARE BROUGHT FROM THE LAB TO THE CLINIC.
-
ADVANCING DRUG DEVELOPMENT FOR RARE DISEASES. ODYLIA'S TOP THREE PROGRAMS ARE RPGRIP1, USH1C, AND BRYDGE SOLUTIONS.
Expenses $636,178 · Revenue $241,089
As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.
Listed in Part VII
-
Ashley WinslowASHLEY WINSLOW
CEO/CSO
- Total calculated
- $230,695
- From this org
- $230,695
- From related orgs
- $0
- Other
- $0
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $230,695
- Bonus
- $0
- Other
- $0
- Deferred
- $0
- Nontaxable benefits
- $0
- Filer's total
- $230,695
-
Jenny KleinJENNY KLEIN
MANAGER OF OPERATIONS & PROGRAM MANAGEMENT
- Total calculated
- $109,099
- From this org
- $109,099
- From related orgs
- $0
- Other
- $0
- Hours/week
- 40
-
Scott DorfmanSCOTT DORFMAN
BOARD CHAIRMAN/TREASURER
- Total calculated
- $0
- Hours/week
- 6
-
Susie TrotochaudSUSIE TROTOCHAUD
SECRETARY
- Total calculated
- $0
- Hours/week
- 3
-
Khandan BaradaranKHANDAN BARADARAN
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
Brian FentonBRIAN FENTON
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
Matthew PletcherMATTHEW PLETCHER
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
Luk VandenberghLUK VANDENBERGH
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
Greg RobinsonGREG ROBINSON
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
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 · 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
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
No itemized grants to organizations on this return.
Provenance
- Return type
- form_990
- Tax year
- 2023
- Filed
- 8 November 2024
- IRS schema version
- 2023v5.1
- Source object
- 202433139349303443
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