Organizations Filed Purposes:
PROVIDING EDUCATION AND SUPPORT SERVICES FOR INDIVIDUALS AND FAMILIES WITH BLEEDING DISORDERS AND EMPOWERING THEM TO LIVE HEALTHIER AND MORE SELF- SUFFICIENT LIVES.
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 2019, 12 PEOPLE WERE SERVED THROUGH THIS PROGRAM.
COMMUNITY EDUCATION: SUCH PROGRAMS INCLUDE BUT, ARE NOT LIMITED TO: CAMP VALOR - 49 CAMPERS ATTENDED IN 2019. 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 - 172 PEOPLE ATTENDED IN 2019. 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. RURAL OUTREACH - 49 PEOPLE ATTNEDED IN 2019. EDUCATION WORKSHOPS AND PRESENTATIONS BROUGHT TO MEMBERS OF THE BLEEDING DISORDERS COMMUNITY IN MORE RURAL PARTS OF UTAH. WOMEN'S CONFERENCES - 39 PEOPLE ATTENDED IN 2019. 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. MISCELLANEOUS EDUCATION EVENTS - 172 PEOPLE ATTENDED IN 2019.
EVERYBODY'S HERE - 2 EVENTS HELD; 172 PEOPLE ATTENDED IN 2019. 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.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Scott Muir | EXECUTIVE DI | 40 | $87,556 |
| Jan Western | EXECUTIVE DI | 40 | $46,903 |
| Kari Woolf | TRUSTEE | 1 | $0 |
| Dave Winslow | VICE PRESIDE | 1 | $0 |
| Bonnie Webb | TRUSTEE | 1 | $0 |
| David Walsh | TRUSTEE | 1 | $0 |
| Ryan J Rushton | TRUSTEE | 1 | $0 |
| Tim Rice | INDUSTRY ADV | 1 | $0 |
| Doug Ohlson | TREASURER | 1 | $0 |
| Tyler Mertlich | SECRETARY | 1 | $0 |
| Hassan Yaish Md | TRUSTEE | 1 | $0 |
| George Rodgers Md | TRUSTEE | 1 | $0 |
| Reg Ecker | PRESIDENT | 1 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202043049349302109_public.xml