Progressive Familial Intrahepatic Cholestasis Advocacy And Resource
- Assets
- $718.3k
- Revenue
- $808.8k
- Investments
- $0.0
- Employees
- 2
- Location
- Stanton, KY
- Founding
- 09/2018
- Data as of
- 12/2021
- EIN
- 83-1084501
Organization Overview
Progressive Familial Intrahepatic Cholestasis Advocacy And Resource, operating under the name contd Advocacy and Resource Ne, is located in Stanton, KY. The organization was established in 2018. According to its NTEE Classification (G01) the organization is classified as: Alliances & Advocacy, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2021, contd Advocacy and Resource NE employed 2 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. contd Advocacy and Resource NE 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 12/2021, contd Advocacy and Resource NE generated $808.8k in total revenue. All expenses for the organization totaled $235.2k during the year ending 12/2021. While expenses have increased by 56.0% per year over the past 3 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2021
Describe the Organization's Mission:
Part 3 - Line 1
TO IMPROVE THE LIVES OF PATIENTS AND FAMILIES WORLDWIDE AFFECTED BY PROGRESSIVE FAMILIAL INTRAHEPATIC CHOLESTASIS, PFIC.
Describe the Organization's Program Activity:
Part 3 - Line 4a
IN 2021 THE PFIC NETWORK PROVIDED PROGRAM SERVICES TO MEET OUR MISSION IN THE AREAS OF PEER SUPPORT, EDUCATION, AWARENESS, OUTREACH, ADVOCACY AND RESEARCH. THROUGH OUR PEER SUPPORT PROGRAM, WE PROVIDED FINANCIAL ASSISTANCE AND CARE PACKAGES TO PATIENTS AND FAMILIES IN NEED. WE HOSTED OPPORTUNITIES FOR GATHERINGS AND CONNECTION THROUGH COMMUNITY ZOOM CALLS AND INDIVIDUAL MENTORSHIP ZOOM CALLS. THE EDUCATION PROGRAM PUBLISHED AN EDUCATIONAL BROCHURE WHICH HAS BEEN TRANSLATED INTO 19 LANGUAGES UPON REQUEST. WE SENT THESE BROCHURES ALONG WITH A PATIENT INFORMATION PACKET TO HOSPITALS THAT CARE FOR PFIC PATIENTS THROUGH OUR PATIENT AND PROVIDER OUTREACH PROGRAM. THE PFIC NETWORK HOSTED A VIRTUAL FAMILY CONFERENCE, ATTENDED BY 109 PARTICIPANTS WORLDWIDE. NEW WEBINARS WERE RECORDED DURING THIS CONFERENCE AND ADDED TO OUR ONLINE EDUCATIONAL WEBINAR LIBRARY, AVAILABLE ON DEMAND. WE ALSO MORE THAN DOUBLED OUR REACH ON SOCIAL MEDIA, NEWSLETTER, THROUGH OUR AWARENESS AND OUTREACH PROGRAMS. THROUGH OUR ADVOCACY PROGRAM, THE PFIC NETWORK HOSTED AN FDA LISTENING SESSION WHERE 5 PFIC CAREGIVERS SHARED THEIR STORIES WITH THE FDA TO BETTER UNDERSTAND THE URGENT NEED FOR TREATMENT DEVELOPMENT IN PFIC. OUR RESEARCH PROGRAM CONTINUES TO HOUSE AND GROW THE PFIC PATIENT REGISTRY, AND EXPANDED WITH THE ADDITION OF A PFIC RESEARCH GRANT PROGRAM. THE GRANT PROGRAM ALLOWED US TO OPEN UP A $30,000 FUNDING OPPORTUNITY FOR PATIENT CENTERED RESEARCH INITIATIVES, IN WHICH APPLICATIONS WILL BE ACCEPTED THROUGH MARCH, 2022.
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PDF Copies of 990 Filings
Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Emily Ventura Co-Founder Executive Directo | OfficerTrustee | 10 | $65,000 |
Erin Hovey Secretary | OfficerTrustee | 2 | $0 |
Hayley Watts Treasurer | OfficerTrustee | 2 | $0 |
Tara Kearns Vice-President Co- Founder | OfficerTrustee | 2 | $0 |
Walter Perez President | OfficerTrustee | 2 | $0 |
Charmaine Gravener Director | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $808,129 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $808,129 |
| Total Program Service Revenue | $0 |
| Investment income | $0 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $626 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $808,755 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $3,000 |
| Grants and other assistance to domestic individuals. | $2,554 |
| Grants and other assistance to Foreign Orgs/Individuals | $5,000 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $64,527 |
| Compensation of current officers, directors, key employees. | $24,822 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $20,000 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $6,449 |
| Fees for services: Management | $1,240 |
| Fees for services: Legal | $8,870 |
| Fees for services: Accounting | $3,133 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $78,432 |
| Advertising and promotion | $5,324 |
| Office expenses | $21,349 |
| Information technology | $6,720 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $1,084 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $5,695 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $1,101 |
| All other expenses | $726 |
| Total functional expenses | $235,204 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $318,319 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $400,000 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $0 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $21 |
| Total assets | $718,340 |
| Accounts payable and accrued expenses | $25,852 |
| Grants payable | $0 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $25,852 |
| Net assets without donor restrictions | $92,488 |
| Net assets with donor restrictions | $600,000 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $718,340 |
Grants Recieved
Over the last fiscal year, we have identified 1 grants that Progressive Familial Intrahepatic Cholestasis Advocacy And Resource has recieved totaling $600,000.
| Awarding Organization | Amount |
|---|---|
Silicon Valley Community Foundation Mountain View, CA PURPOSE: Health | $600,000 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
American Academy Of Dermatology Association Inc Rosemont, IL | $34,497,979 | $15,013,586 |
Minority Aids Support Services Inc Newport News, VA | $2,781,500 | $3,058,740 |
Alliance For Paired Donation Inc Toledo, OH | $2,367,294 | $1,128,926 |
Virginia Pharmaceutical Association Inc North Chesterfield, VA | $724,418 | $891,660 |
National Diabetes Volunteer Leadership Council Lexington, KY | $505,030 | $635,524 |
Cochlear Implant Awareness Foundation Inc Springfield, IL | $463,924 | $214,307 |
Stowers Policy Institute Inc Kansas City, MO | $30,537,171 | $3,100,830 |
Progressive Familial Intrahepatic Cholestasis Advocacy And Resource Stanton, KY | $718,340 | $808,755 |
South Central Region Healthcare Coalition Inc Columbia, TN | $83,707 | $177,876 |
Global Aging Institute Alexandria, VA | $16,080 | $188,335 |
Epilepsy Advocacy Network Moline, IL | $42,723 | $0 |
Habilitation Information Vocation & Education Inc Bowling Green, KY | $55,608 | $0 |