Utah Chapter National Hemophilia Foundation
- Assets
- $870.6k
- Revenue
- $367.9k
- Investments
- $0.0
- Employees
- 2
- Location
- Salt Lake City, UT
- Founding
- 03/2000
- Data as of
- 12/2021
- EIN
- 87-6127162
Organization Overview
Utah Chapter National Hemophilia Foundation is located in Salt Lake City, UT. The organization was established in 2000. According to its NTEE Classification (G20) the organization is classified as: Birth Defects & Genetic Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2021, Utah Chapter National Hemophilia Foundation employed 2 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Utah Chapter National Hemophilia Foundation 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, Utah Chapter National Hemophilia Foundation generated $367.9k in total revenue. The organization has seen a slow decline revenue. Over the past 7 years, revenues have fallen by an average of (2.3%) each year. All expenses for the organization totaled $258.4k during the year ending 12/2021. As we would expect to see with falling revenues, expenses have declined by (4.2%) per year over the past 7 years. 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
PROVIDING EDUCATION AND SUPPORT SERVICES FOR INDIVIDUALS AND FAMILIES WITH BLEEDING DISORDERS AND EMPOWERING THEM TO LIVE HEALTHIER AND MORE SELF- SUFFICIENT LIVES.
Describe the Organization's Program Activity:
Part 3 - Line 4a
LIFELINE: A FUND THROUGH WHICH INDIVIDUALS WITH BLEEDING DISORDERS CAN RECEIVE FINANCIAL ASSISTANCE WITH HIGH INSURANCE PREMIUMS, COBRA PAYMENTS, AND OUT OF POCKET MEDICAL EXPENSES ASSOCIATED WITH THE DIAGNOSIS AND TREATMENT OF BLEEDING DISORDER. FOR 2021, 7 PEOPLE WERE SERVED THROUGH THIS PROGRAM.
COMMUNITY EDUCATION: SUCH PROGRAMS INCLUDE, BUT ARE NOT LIMITED TO: VIRTUAL CAMP VALOR - 58 CAMPERS FROM 17 FAMILIES ATTENDED IN 2021. FOR THE CHILDREN IN UTAH'S BLEEDING DISORDERS COMMUNITY, CAMP VALOR REPRESENTS THE FOUNDATION FOR EFFECTIVE LIFE-LONG MANAGEMENT OF A BLEEDING DISORDER. IT IS AT THIS CAMP THAT CHILDREN FIRST LEARN TO SELF-INFUSE. CAMPERS, ALSO, LEARN THE BASICS OF SELF-CARE REQUIRED FOR THE TREATMENT AND MANAGEMENT OF THEIR DISEASE STATE. BECAUSE OF THE SEVERITY OF THE CONDITION FROM WHICH THEY SUFFER, CHILDREN WITH HEMOPHILIA SELDOM HAVE THE OPPORTUNITY TO ENJOY MANY OF THE SAME PHYSICAL ACTIVITIES THAT THEIR UNAFFECTED PEERS DO. CAMP VALOR, ALLOWS CHILDREN WITH BLEEDING DISORDERS TO SPEND TIME OUTDOORS, RECREATING UNDER THE CONSTANT CARE AND SUPERVISION OF A FULL COMPLEMENT OF MEDICAL PROFESSIONALS. FOR MOST OF THESE CHILDREN, IT IS THE ONLY TIME THAT THEY CAN JUST BE KIDS. FAMILY FEST & RESOURCE FAIR - 105 PEOPLE ATTENDED IN 2021. PHARMACEUTICAL MANUFACTURERS AND HOME CARE COMPANY REPRESENTATIVES EXHIBIT WITH INFORMATION ABOUT THE LATEST TOOLS & TECHNIQUES IN MANAGING BLEEDING DISORDERS. AVAILABLE INFORMATION INCLUDES: LATEST TREATMENTS AND MEDICATIONS, INSURANCE CO-PAYMENT ASSISTANCE PROGRAMS, HOME HEALTH SERVICES, UHF PROGRAM SERVICES AND RESOURCES, AND MORE. WOMEN'S CONFERENCE - 41 PEOPLE ATTENDED IN 2021. JUST FOR WOMEN IN THE BLEEDING DISORDERS COMMUNITY, AGES 12 AND OLDER, INCLUDING THOSE WITH VON WILLEBRAND DISEASE, CARRIERS, MOMS OF AFFECTED CHILDREN, WIVES OF AFFECTED MEN, AND CAREGIVERS. PARTICIPANTS ENJOY WORKSHOPS AND INFORMATION SPECIFICALLY FOCUSED ON THE UNIQUE ISSUES ASSOCIATED WITH WOMEN AND BLEEDING DISORDERS. ADULT RETREAT 59 PEOPLE ATTENDED IN 2021. FOR ADULTS IN THE BLEEDING DISORDERS COMMUNITY, AGES 18 AND OLDER. A WEEKEND OF EDUCATION AND NETWORKING FOR ADULTS WITH BLEEDING DISORDERS AND/OR PARENTS OF CHILDREN WITH BLEEDING DISORDERS. MISCELLANEOUS EDUCATION EVENTS - 270 PEOPLE ATTENDED IN 2021.
EVERYBODY'S HERE: 161 PEOPLE ATTENDED IN 2021. A PROGRAM THAT BRINGS TOGETHER THE UHF, INDUSTRY PARTNERS, THE HEMOPHILIA TREATMENT CENTER STAFF, AND THE BLEEDING DISORDERS COMMUNITY. IT IS AN EVENING OF NETWORKING, INFORMATION, AND PEER SUPPORT. INFORMATIONAL EXHIBITS ARE PROVIDED BY PHARMACEUTICAL MANUFACTURERS AND HOME CARE COMPANIES, WHICH DISSEMINATE THE LATEST INFORMATION ON THE MANAGEMENT AND CARE OF BLEEDING DISORDERS. COMMUNITY MEMBERS ARE ABLE TO ASSOCIATE AND LEARN FROM ONE ANOTHER'S SHARED EXPERIENCES.
HOLIDAY ASSISTANCE FUND: 3 FAMILIES WERE SERVED IN 2021. FAMILIES WITHIN THE BLEEDING DISORDERS COMMUNITY MAY NEED SOME EXTRA FINANCIAL ASSISTANCE TO SUPPORT THEIR FAMILY THROUGH THE HOLIDAY SEASON. FUNDS ARE USED TO BUY FOOD, CLOTHING AND TOYS FOR FAMILIES DETERMINED TO BE MOST IN NEED. FREQUENTLY, THE UHF WILL PARTNER WITH A LOCAL BUSINESS TO PROVIDE NEEDED ITEMS TO FAMILIES.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Reg Ecker President | OfficerTrustee | 1 | $0 |
Tyler Mertlich Secretary | OfficerTrustee | 1 | $0 |
Kim Nmezi Treasurer | OfficerTrustee | 2 | $0 |
Bonnie Webb Vice Preside | OfficerTrustee | 3 | $0 |
Kari Woolf President | OfficerTrustee | 3 | $0 |
Jan Western Executive Di | Officer | 40 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $105,815 |
| All other contributions, gifts, grants, and similar amounts not included above | $200,247 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $306,062 |
| Total Program Service Revenue | $0 |
| Investment income | $67 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $61,732 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $367,861 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $411 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $60,000 |
| Compensation of current officers, directors, key employees. | $4,200 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $48,249 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $8,186 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $1,000 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $2,500 |
| Advertising and promotion | $0 |
| Office expenses | $1,898 |
| Information technology | $5,255 |
| Royalties | $0 |
| Occupancy | $37,126 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $1,162 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $2,141 |
| All other expenses | $76 |
| Total functional expenses | $258,436 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $210,386 |
| Savings and temporary cash investments | $660,204 |
| Pledges and grants receivable | $0 |
| 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 | $0 |
| Total assets | $870,590 |
| Accounts payable and accrued expenses | $88 |
| 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 | $88 |
| Net assets without donor restrictions | $870,502 |
| Net assets with donor restrictions | $0 |
| 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 | $870,590 |
Grants Recieved
Over the last fiscal year, we have identified 3 grants that Utah Chapter National Hemophilia Foundation has recieved totaling $44,299.
| Awarding Organization | Amount |
|---|---|
Direct Relief Santa Barbara, CA PURPOSE: SUPPORT TO US CLINICS & HEALTH CENTERS FOR LOW-INCOME, UNINSURED PATIENTS | $32,900 |
American Online Giving Foundation Inc Newark, DE PURPOSE: GENERAL SUPPORT | $10,778 |
Amazonsmile Foundation Seattle, WA PURPOSE: GENERAL SUPPORT | $621 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
United Cerebral Palsy Association Of Central Arizona Phoenix, AZ | $10,877,966 | $8,970,873 |
Cerebral Palsy Of Utah South Jordan, UT | $2,618,883 | $2,869,191 |
Gene Conley Foundation Las Vegas, NV | $6,577,995 | $689,452 |
Utah Chapter National Hemophilia Foundation Salt Lake City, UT | $870,590 | $367,861 |
Ccd Smiles Orem, UT | $82,223 | $0 |
Prader-Willi Syndrome Association Of Colorado Littleton, CO | $331,517 | $0 |
Cascade Foundation Of Southern Arizona Inc Tucson, AZ | $233,292 | $0 |
Cerebral Palsy Association Of Colorado Springs Inc Colorado Springs, CO | $17,199 | $0 |
Pennies For Nicoll Foundation Colorado Springs, CO | $0 | $0 |