Nonprofit · EIN 34-1915691
GORLIN SYNDROME ALLIANCE
Tax-exempt · AUSTIN, TX 78704
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2024 | 990 | $489,524 | $430,424 | $59,100 | $670,207 | $275,536 | $394,671 |
| December 31, 2023 | 990 | $307,070 | $359,081 | -$52,011 | $337,186 | $1,615 | $335,571 |
| December 31, 2022 | 990 | $503,388 | $302,326 | $201,062 | $391,014 | $3,432 | $387,582 |
Financial details: 990 for the year ended December 31, 2024
Revenue
- Contributions, gifts and grants
- $480,996
- Program service revenue
- $0
- Investment income
- $10,499
- Net income from fundraising events
- -$1,971
- Other revenue
- -$1,971
Expenses
- Grants and similar amounts paid
- $0
- Compensation of officers, directors and key employees
- $133,265
- Other salaries and wages
- $174,855
- Salaries, compensation and benefits (total)
- $322,924
- Professional fundraising fees
- $0
- Accounting fees
- $23,308
- Travel
- $12,557
- Depreciation
- $592
- Program services (functional)
- $279,283
- Management and general (functional)
- $70,574
- Fundraising (functional)
- $80,567
Balance sheet and other
- Total assets, start of year
- $337,186
- Total assets, end of year
- $670,207
- Total liabilities, end of year
- $275,536
- Net assets, end of year
- $394,671
- Land, buildings and equipment
- $263
- Net assets without donor restrictions
- $183,103
- Net assets with donor restrictions
- $211,568
- Gross receipts
- $500,890
- Employees
- 3
- Volunteers
- 29
- Year formed
- 2000
- State of legal domicile
- PA
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2024, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| JULIA BRENEISER | EXECUTIVE DIRECTOR Officer | 32 | $84,517 | $7,612 |
| MEREDITH WEISS | EXECUTIVE DIRECTOR Officer | 32 | $41,136 | $0 |
| STACY BISSELL | DIRECTOR Trustee or director | 2 | $0 | $0 |
| TAYLOR HODGE | VICE PRESIDENT Trustee or director, Officer | 2.5 | $0 | $0 |
| BETH SPIEGEL | TREASURER Trustee or director, Officer | 1.5 | $0 | $0 |
| RONI RUBENSTEIN | SECRETARY Trustee or director, Officer | 2 | $0 | $0 |
| DR JIM SWIFT | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| JENNI WERKMEISTER | DIRECTOR ROLLED OFF BOARD IN JUNE Trustee or director | 1 | $0 | $0 |
| KEVIN GULLATT | PRESIDENT STARTING IN MARCH Trustee or director, Officer | 3 | $0 | $0 |
| MICHAEL RAINEN | DIRECTOR Trustee or director | 1.5 | $0 | $0 |
| SAMUEL BRENEISER | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| DR ELENA HAWRYLUK | DIRECTOR Trustee or director | 2 | $0 | $0 |
| ALIX ALDERMAN | DIRECTOR JOINED BOARD IN SEP. Trustee or director | 1 | $0 | $0 |
990 for the year ended December 31, 2023: 12 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| JULIA BRENEISER | EXECUTIVE DIRECTOR Officer | 32 | $74,996 | $14,347 |
| MEREDITH WEISS | PRESIDENT Trustee or director, Officer | 4 | $0 | $0 |
| STACY BISSELL | VICE PRESIDENT Trustee or director, Officer | 2 | $0 | $0 |
| TAYLOR HODGE | VICE PRESIDENT Trustee or director, Officer | 2 | $0 | $0 |
| BETH SPIEGEL | TREASURER Trustee or director, Officer | 1 | $0 | $0 |
| RONI RUBENSTEIN | SECRETARY Trustee or director, Officer | 2 | $0 | $0 |
| DR JIM SWIFT | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| JENNI WERKMEISTER | DIRECTOR Trustee or director | 1 | $0 | $0 |
| KEVIN GULLATT | DIRECTOR Trustee or director | 1 | $0 | $0 |
| MICHAEL RAINEN | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| SAMUEL BRENEISER | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| DR ELENA HAWRYLUK | DIRECTOR Trustee or director | 2 | $0 | $0 |
990 for the year ended December 31, 2022: 11 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| JULIA BRENEISER | EXECUTIVE DIRECTOR Officer | 32 | $74,996 | $19,680 |
| MEREDITH WEISS | PRESIDENT Trustee or director, Officer | 4 | $0 | $0 |
| STACY BISSELL | VICE PRESIDENT Trustee or director, Officer | 4 | $0 | $0 |
| BETH SPIEGEL | TREASURER Trustee or director, Officer | 1 | $0 | $0 |
| RONI RUBENSTEIN | SECRETARY Trustee or director, Officer | 1 | $0 | $0 |
| DR ELENA HAWRYLUK | DIRECTOR Trustee or director | 1 | $0 | $0 |
| DR JIM SWIFT | DIRECTOR Trustee or director | 1 | $0 | $0 |
| JENNI WERKMEISTER | DIRECTOR Trustee or director | 1 | $0 | $0 |
| KEVIN GULLATT | DIRECTOR Trustee or director | 1 | $0 | $0 |
| MICHAEL RAINEN | DIRECTOR Trustee or director | 1 | $0 | $0 |
| SAMUEL BRENEISER | DIRECTOR Trustee or director | 1 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 3005 S LAMAR BLVD SUITE D 109 264, AUSTIN, TX 78704-8864
- In care of
- % JULIE BRENEISER
- Principal officer (990 for 2024)
- MEREDITH WEISS, 3005 S LAMAR BLVD D 109 264, AUSTIN, TX 78704
- Signed the 990
- MEREDITH WEISS, EXECUTIVE DIRECTOR
- Phone
- (267) 689-6443
- Website
- HTTPS://GORLINSYNDROME.ORG/
- Return prepared by
- BONADIO & CO LLP
Mission
TO THOUGHTFULLY SUPPORT, COMPREHENSIVELY EDUCATE, AND AGGRESSIVELY SEEK THE BEST TREATMENTS AND A CURE FOR THOSE AFFECTED BY GORLIN SYNDROME.
Program accomplishments
- THE GORLIN SYNDROME ALLIANCE (GSA) ADVANCES ITS MISSION THROUGH TARGETED PROGRAM SERVICES DESIGNED TO SUPPORT PATIENTS AND THEIR FAMILIES, WHILE COALESCING THE BROADER COMMUNITY, INCLUDING PATIENTS, SCIENTISTS AND CLINICIANS, AROUND PRIORITIES THAT IMPROVE HOW PATIENTS LIVE WITH THE DISEASE NOW, AND IN THE FUTURE.RESEARCH GRANT PROGRAMIN 2024, THE GSA ORGANIZED, MANAGED, AND FUNDED THE ONLY RESEARCH GRANT PROGRAM FOR GORLIN SYNDROME, DEDICATED TO IMPROVING QUALITY OF LIFE FOR PATIENTS AND FAMILIES AFFECTED. THROUGH TARGETED INVESTMENT IN SCIENTIFIC LEARNINGS AND INNOVATION, THIS PROGRAM ACCELERATES DISCOVERIES IN THE FIELD. OUR OBJECTIVE IS TO FOCUS RESEARCHERS' EFFORTS ON THE QUESTIONS THAT WILL ILLUMINATE ROOT MECHANISMS OF DISEASE, AND IMPROVE CLINICAL OUTCOMES ON MEASURES THAT MATTER TO PATIENTS. IN 2024, THE GSA RECEIVED MORE THAN DOUBLE THE NUMBER OF RESEARCH PROPOSAL APPLICATIONS FROM THE YEAR PRIOR. THE GRANT REVIEW COMMITTEE SELECTED THE PROPOSAL "DEFINING THE BCC MICROENVIRONMENT CHANGE IN RESPONSE TO SMOOTHENED INHIBITION: IDENTIFICATION OF A ROLE FOR ADDITION OF CHECKPOINT INHIBITOR TO OPTIMIZE ANTITUMOR THERAPY FOR OVERWHELMING DISEASE".PATIENT REGISTRY DATA COLLECTIONTHE GSA MAINTAINED A GORLIN SYNDROME PATIENT REGISTRY, WHICH ENROLLS PATIENTS AND COLLECTS ANONYMIZED HEALTH HISTORIES FROM PARTICIPANTS FOR THE PURPOSE OF CENTRALIZING DATA ABOUT GORLIN SYNDROME. THE DATA WILL DRIVE DISCOVERIES. THE GSA ENROLLED NEW PARTICIPANTS DURING 2024, WITH THE OBJECTIVE OF GROWING THE REGISTRY PARTICIPATION YEAR ON YEAR.EDUCATIONAL RESOURCESTHE GSA PROVIDED FREE, PUBLICLY AVAILABLE EDUCATIONAL RESOURCES, INCLUDING PATIENT FOCUSED EDUCATIONAL MATERIALS, WEBINARS, AND EXPERT PRESENTATIONS. THESE MATERIALS ARE MADE AVAILABLE AT NO COST TO INDIVIDUALS ACROSS THE US THROUGH OUR WEBSITE AND YOUTUBE CHANNEL.COMMUNITY AND PATIENT SUPPORT SERVICESTHE GSA FACILITATED 12 VIRTUAL SUPPORT GROUP MEETINGS, 4 TOWN HALL MEETINGS, AND AD HOC IN-PERSON GATHERINGS FOR PATIENTS AND FAMILIES. TELEPHONIC SUPPORT AND ASSISTANCE WAS PROVIDED THROUGHOUT THE YEAR, WITH STAFF AND VOLUNTEERS RESPONDING TO 119 INCOMING TELEPHONE CALLS AND COUNTLESS EMAILS FROM PATIENTS, FAMILIES, OR CLINICIANS. INFORMATION DISSEMINATION AND COMMUNICATIONSTHROUGH ITS COMMUNICATIONS STRATEGY, THE GSA DISTRIBUTED (12) MONTHLY E-NEWSLETTERS, WITH ADDITIONAL, TARGETED RESEARCH UPDATES. INFORMATION INCLUDED EMERGING THERAPIES, CLINICAL TRIAL OPPORTUNITIES, AND PATIENT SUPPORT SERVICES. THROUGH VOLUNTEERS AND STAFF, THE GSA ALSO MADE HUNDREDS OF CALLS TO COMMUNITY MEMBERS TO ENSURE CRITICAL INFORMATION WAS SHARED. IN ADDITION, RESEARCH AND GRANT OPPORTUNITY ANNOUNCEMENTS WERE CIRCULATED TO CLINICIANS AND SCIENTISTS IN THE GSA NETWORK.Expenses $279,283
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | Not on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 34-1915691
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2024
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G80)
- Assets (IRS master file)
- $670,207
- Income (IRS master file)
- $500,890
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2024 | $489,524 | $430,424 | $670,207 | XML |
| 990 | December 2023 | $307,070 | $359,081 | $337,186 | XML |
| 990 | December 2022 | $503,388 | $302,326 | $391,014 | XML |
| 990-PF | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990-EZ | December 2017 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 34-1915691).
Questions about GORLIN SYNDROME ALLIANCE
- What is the EIN of GORLIN SYNDROME ALLIANCE?
- The employer identification number (EIN) of GORLIN SYNDROME ALLIANCE is 34-1915691.
- Is GORLIN SYNDROME ALLIANCE tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2024.
- Are donations to GORLIN SYNDROME ALLIANCE tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does GORLIN SYNDROME ALLIANCE file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of GORLIN SYNDROME ALLIANCE due?
- The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did GORLIN SYNDROME ALLIANCE last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2024.
- Who is the principal officer of GORLIN SYNDROME ALLIANCE?
- The 990 for the year ended December 31, 2024 names MEREDITH WEISS.
- Who are the officers and directors of GORLIN SYNDROME ALLIANCE?
- The 990 for the year ended December 31, 2024 lists 13 people; 2 received compensation from the organization, the highest $84,517 (JULIA BRENEISER, EXECUTIVE DIRECTOR).
- How much revenue does GORLIN SYNDROME ALLIANCE have?
- On its 990 for the year ended December 31, 2024 it reported revenue of $489,524, expenses of $430,424 and total assets of $670,207 at year end.
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