irs program accomplishments · form 990 part iii · fy2021
what they reported doing
Program narrative the organization filed with the IRS. Ordered by program spending.
- #1 primary $227KHEALTH CENTER - ADULT HEALTH CENTER ESTABLISHED TO PROVIDE PRIMARY CARE AND BLEEDING DISORDERS CARE TO TREAT THE WHOLE PERSON. IT IS OPEN TO THOSE WITH BLEEDING DISORDERS AND THEIR ADULT FAMILY MEMBERS. AHA PURCHASED A BUILDING AND RENOVATED IT FOR THE HEALTH CENTER. THE PROGRAM WAS DISCONTINUED IN SEPTEMBER 2021 AND THE BUIDLING WAS SUBSEQUENTLY SOLD.
- #2 $89KCOMMUNITY SUPPORT PROGRAMS - PROVIDE EDUCATION AND SUPPORT GROUP MEETINGS INCLUDING:1. QUARTERLY MEETINGS FOR THE COMMUNITY AS A WHOLE THAT INCLUDE EDUCATION, PHARMACEUTICAL INFORMATION, AND TIME FOR INTERACTION.2. EDUCATIONAL MEETINGS THAT INCLUDED: A. LEARNING TO DISCLOSE YOUR BLEEDING DISORDER IN A SAFE WAY. B. UNDERSTANDING INSURANCE AND OPTIONS AVAILABLE TO OUR COMMUNITY. C. HOW TO INTERACT WITH LEGISLATORS TO PROMOTE INSURANCE REFORM. D. NUTRITION AND EXERCISE - HOW TO IMPROVE QUALITY OF LIFE. E. MENTAL HEALTH - HOW TO IMPROVE QUALITY OF LIFE. F. EDUCATIONAL MEETINGS FOR SPANISH-SPEAKING COMMUNITY. G. ON-GOING PROGRAM FOR AT-RISK YOUTH.
named programs · 3 · from sources
what they call their work
HFA Symposium Travel Scholarship
Offers travel scholarships for families to attend the Hemophilia Federation of America Symposium, promoting community connection and education.
NOW Conference
A national educational conference dedicated to individuals and families living with von Willebrand Disease, featuring expert-led sessions and networking opportunities.
Teen Program
Provides a dynamic space for teens aged 14–25 to connect and grow, focusing on self-awareness, empowerment, leadership, and follow-through.
activities · 7 clusters
what they do
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Young Adult Advocacy & Leadership Training 6 activities
- Bilingual and Bicultural Support ServicesProvides bilingual and bicultural programs and services to individuals and families affected by bleeding disorders across Arizona, ensuring culturally competent support and access to care.
- General Support, Education, and Advocacy ServicesProvides ongoing support, education, and advocacy services to improve medical care and insurance coverage for individuals and families affected by bleeding disorders throughout Arizona.
- General Support, Education, and Advocacy for Bleeding DisordersProvides bilingual and bicultural services, support, education, and advocacy to improve medical care and insurance coverage for individuals and families affected by bleeding disorders across Arizona, helping them cope and become self-advocates.
- Legislative Advocacy and TrainingOrganizes an annual Legislative Day at the Arizona State Capitol for the bleeding disorder community to advocate for legislative changes, raise awareness, and engage with policymakers. This includes hosting an Advocacy Training Dinner to equip community members with knowledge and tools for effective advocacy.
- Youth Advocacy and Leadership DevelopmentRuns the Future Leaders Program and Advocacy Training Dinner to equip teens and young adults (ages 16–25) with leadership, public speaking, and advocacy skills, including preparation for participation in Arizona Legislative Day and National Bleeding Disorders Foundation Washington Days in D.C.
- von Willebrand Disease Educational ConferencesOrganizes and hosts an annual spring conference and a national educational conference dedicated exclusively to von Willebrand Disease, serving individuals and families affected by the condition.
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Youth Foster Care Transition Support 2 activities
- Teen and Young Adult Development ProgramsOffers a range of programs for teens and young adults, including the annual Teen & Young Adult Retreat, monthly OWN IT! transition program, summer Teen Tuesdays activities, and Teen Tracks at the annual meeting, all designed to build community, provide education, and foster self-advocacy for individuals aged 15–25.
- Youth Transition and Leadership DevelopmentSupports youth in transitioning to adulthood by promoting education, employment with good insurance, and self-advocacy. This includes the "OWN IT!" transition program, annual Teen & Young Adult Retreats, Teen Tuesdays, and Teen Tracks at annual meetings, as well as the Future Leaders Program which empowers teens and young adults (ages 16-25) to participate in advocacy events like Washington Days.
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Medical Needs Summer Camps for Children 1 activity
- Camps for Individuals with Bleeding DisordersOperates Camp HONOR for children aged 8-17 and Camp H.U.G. (Hemophilia Uniting Generations) as a family camp, both for individuals and families affected by inherited bleeding disorders in Arizona, including hemophilia and von Willebrand disease.
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Charity Galas and Auctions 1 activity
- Community Awareness and Fundraising EventsHosts the Zoo Walk event to raise public awareness and funds in support of the bleeding disorders community in Arizona.
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Healing Retreats & Empowerment Courses for At-Risk Young Women 1 activity
- Support and Education for Women with Bleeding DisordersOperates a Women's Group and plans a Women's Retreat for women aged 18 and over in the bleeding disorder community, providing a space for connection, education, and support. This includes organizing events like the BleedHERS Lunch in Tempe, AZ.
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Conference Attendance Scholarships 1 activity
- Travel Support for National ConferencesProvides travel scholarships and covers travel, lodging, and meals for members attending national events such as the Hemophilia Federation of America Symposium and the NOW Conference.
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Uncategorized 4 activities
- Advocacy and Policy EngagementOrganizes an annual Legislative Day at the Arizona State Capitol, where community members meet with legislators, share personal stories, and advocate for policy changes affecting families with bleeding disorders.
- Educational Conferences and Travel ScholarshipsOffers travel scholarships for members to attend the Hemophilia Federation of America Symposium and organizes national educational conferences, including an annual spring conference, focused exclusively on von Willebrand Disease, providing travel, lodging, and meals for attendees.
- Family and Youth Camp ProgramsOperates two annual camps: Camp HONOR for children ages 8–17 with inherited bleeding disorders, and Camp H.U.G. (Hemophilia Uniting Generations), a family camp for Arizona residents affected by hemophilia, von Willebrand disease, or other inherited bleeding disorders.
- Women's Support and Education ProgramsOperates ongoing support programs for women aged 18 and over in the bleeding disorder community, including a Women's Group, the annual BleedHERS Lunch event in Tempe, AZ, and a planned Women’s Retreat focused on connection, education, and peer support.
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financials · form 990 · fy2021
the money
revenue
Total revenue$1.14M
Contributions & grants$733K65%
Program service revenue$12K1%
Investment income$396K35%
Other revenue$-6K
expenses
Total expenses$995K
Program expenses77%
Admin / overhead11%
Fundraising12%
Salaries & benefits$344K
Grants paid out$13K
Largest expense lineCompensation
balance sheet
Total assets$1.90M
Cash$1.18M
Investments$0
Liabilities$625K
Net assets$1.27M
Liquid reserves14.2 mo
2 years on record · 2020–2021 · YoY revenue -30.9%
leadership · form 990 part vii · fy2021
who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| CHASTITY FERMOILE | EXECUTIVE DIRECTOR | 40 | $121K |
board members · 11
- AL SCHMEISER — CHAIR
- ASHLEE RICHMAN — DIRECTOR
- ELLEN OWENS-KARCSAY — VICE-PRESIDENT
- JAIME NEILSON — DIRECTOR
- KARIN GERLACH — SECRETARY
- KIANA VERDUGO — DIRECTOR
- MICHAEL SCHWAHN — DIRECTOR
- RACHEL VERDUGO — DIRECTOR
- SEAN OKEEFE — DIRECTOR
- VICTOR I ALONZO — TREASURER
- WILLIAM KIRSCHNER — PRESIDENT
relationships · 11
who they work with
- Bill Holt clinic Partner — Partners to serve the HIV portion of the bleeding disorder community.
- CSL Behring Funder — Provides grant funding for the NOW Conference.
- Caffe Boa Partner — Host venue for the BleedHERS Lunch event in Tempe, AZ.
- Hemophilia Treatment Centers Partner — Partners with Hemophilia Treatment Centers to provide programs and services tailored to the bleeding disorder community.
- National Bleeding Disorders Foundation (NBDF) Partner — Teens and young adults in the Future Leaders Program participate in NBDF's Washington Days.
- PNWBD Partner — Collaborates on the YETI national conference for teens with bleeding disorders.
- Pfizer Partner — Collaborates with AZBD on the development and distribution of the Resources Guide for the bleeding disorders community in Arizona.
- Sanofi Partner — Co-hosts an Advocacy Training Dinner to equip the bleeding disorders community with advocacy tools.
- Takeda Partner — Sponsors the NOW Conference.
- medical professionals Partner — Works with medical professionals to provide targeted programs and services for individuals with bleeding disorders.
- other agencies Partner — Collaborates with other agencies to deliver services to the bleeding disorder community.