Lymphangiomatosis & Gorhams Disease Alliance Inc
- Assets
- $421.9k
- Revenue
- $0.0
- Investments
- $0.0
- Employees
- 0
- Location
- Saint Petersburg, FL
- Founding
- 03/2008
- Data as of
- 06/2023
- EIN
- 26-1224181
Organization Overview
Lymphangiomatosis & Gorhams Disease Alliance Inc is located in Saint Petersburg, FL. The organization was established in 2008. According to its NTEE Classification (G99) the organization is classified as: Voluntary Health Associations & Medical Disciplines N.E.C., under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Lymphangiomatosis & Gorhams Disease Alliance Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 06/2023, Lymphangiomatosis & Gorhams Disease Alliance Inc generated $121.4k in total revenue. This organization has experienced exceptional growth, as over the past 6 years, it has increased revenue by an average of 14.2% each year . All expenses for the organization totaled $280.9k during the year ending 06/2023. You can explore the organizations financials more deeply in the financial statements section below.
Form
990EZ
Mission & Program ActivityExcerpts From the 990EZ Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
WORLDWIDE PATIENT SUPPORT PROGRAM WHICH INCLUDES A PATIENT REGISTRY, A WEBSITE WITH RARE DISEASE INFORMATION AND PATIENT DISCUSSION FORUM.
Describe the Organization's Program Activity:
Part 3
OUR OUTREACH PROGRAM INCREASES THE AWARENESS OF CLA'S THROUGH OUR WEBSITE AND SOCIAL MEDIA INCLUDING EVENTS SUCH AS AWARENESS DAY AND RARE DISEASE DAY. THIS ALSO SUPPORTED THE DISTRIBUTION OF LEARNING VIDEOS FROM OUR CONFERENCE FOR THOSE INDIVIDUALS THAT COULD NOT ATTEND INCLUDING A SPECIAL INTRODUCTION TALKS ABOUT CLA'S.
OUR PATIENT SUPPORT SERVICES INCLUDED THE MANAGEMENT OF OUR PATIENT REGISTRY TO SUPPORT RESEARCH NEEDS AND TRACK VITAL INFORMATION ABOUT CLAS. THE PROGRAMS ALSO SUPPORTS THE MANAGEMENT OF SEVERAL SUPPORT GROUPS.
OUR RESEARCH PROGRAM INCLUDES $35,000 TO FUND RESEARCH GRANTS FROM THE UNIVERSITY OF PENNSYLANIA/ THE MILLION DOLLARY BIKE RIDE TO STUDY SUPPORT COMPLEX LYMPHATIC ANOMLIES ($35,000). TWO AWARD RECEIPTIENTS WERE SELECTED. WE ALSO SUPPORT TWO YOUNG INVESTIGATOR AWARDS TO RESEARCH PROJECTS SPECIFIC TO CLA ($25,000).
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Scott Weisner President | 2 | $0 | |
Scott Goldfarb Board Member | 2 | $0 | |
Mitch Maersch Board Member | 2 | $0 | |
Tiffany Ferry Board Member | 2 | $0 | |
Louise Murgia Director Of Operations | 40 | $47,216 | |
Michael Kelly Executive Director | 20 | $57,038 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Total Revenue from Contributions, Gifts, Grants & Similar | $118,418 |
| Total Program Service Revenue | $0 |
| Membership dues | $0 |
| Investment income | $2,845 |
| Gain or Loss | $0 |
| Net Income from Gaming & Fundraising | $0 |
| Other Revenue | $140 |
| Total Revenue | $121,403 |
| Statement of Expenses | |
|---|---|
| Grants and similar amounts paid | $0 |
| Benefits paid to or for members | $0 |
| Salaries, other compensation, and employee benefits | $0 |
| Professional fees and other payments to independent contractors | $215,149 |
| Occupancy, rent, utilities, and maintenance | $0 |
| Printing, publications, postage, and shipping | $1,820 |
| Other expenses | $16,899 |
| Total expenses | $280,940 |
| Balance Sheet | |
|---|---|
| Cash, savings, and investments | $312,210 |
| Other assets | $0 |
| Total assets | $421,865 |
| Total liabilities | $2,948 |
| Net assets or fund balances | $418,917 |
Grants Awarded
Over the last fiscal year, Lymphangiomatosis & Gorhams Disease Alliance Inc has awarded $37,000 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
UNIVERSITY OF PA PURPOSE: research | $27,000 |
UPLIFT ATHLETES PURPOSE: program | $10,000 |