HEMOPHILIA FOUNDATION OF SOUTHERN CALIFORNIA

aka HFSC   |   Pasadena, CA   |  www.hemosocal.org

Mission

“Improving the quality of life and building community for those living with inherited bleeding disorders in Southern California”

Ruling year info

1973

Executive Director

Ms. Michelle Kim Esq.

Main address

959 E Walnut St Ste 114

Pasadena, CA 91106 USA

Show more contact info

EIN

95-1916053

NTEE code info

Alliance/Advocacy Organizations (E01)

Fund Raising and/or Fund Distribution (E12)

Blood Supply Related (E61)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The mission of the Hemophilia Foundation of Southern California (HFSC) has been serving the community since 1954, providing quality programs and services to individuals affected by Hemophilia and other bleeding disorders. Like many foundations, ours began out of the vision of a few individuals who saw the need and importance of uniting in an effort to provide information, education, and improved treatments that would keep their loved ones alive. Over the years, we have continued this mission and have grown to meet the changing needs of the bleeding disorders community. We continue, where medical treatment leaves off; in our efforts to reach all people affected by genetic rare blood disorders. Our conditions are rare and we plan to increase research projects and pursue diversity, equity and inclusion initiatives to ensure health equity for all people in our region.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Family Information Day

Each year families affected by bleeding disorders are invited to a day full of training, medical updates, product seminars, workshops, and peer support groups specifically geared towards meeting the current needs of the bleeding disorders community.

Population(s) Served
Families

The Retreat is designed for families to have a fun and relaxing weekend of activities, education, support, and respite. Life with bleeding disorders can be extremely complicated and there is great value in sharing experiences with others in a supportive environment.

Population(s) Served
Families

Camp Blood Brothers and Sisters is the oldest as well as one of the largest camping and outreach programs for kids affected by bleeding disorders. It is open to children with bleeding disorders ages 7-16, as well as their siblings. It's a safe haven where kids can enjoy a fun, memorable experience with others their age, while learning more about their condition. They can talk to affected peers, and gain more self-confidence as a result. Camp is held at The Painted Turtle, founded by Paul Newman.

Camp is specifically designed to meet the special needs of children with hemophilia and other bleeding disorders and provides activities that are bleeding disorders friendly. Counselors and staff are recruited and trained about bleeding disorders, and many of our volunteers have bleeding disorders themselves. We also have an extraordinary medical team on duty 24 hours a day, who are specially trained. With the help of our faithful donors, we are able to provide this wonderful experience at no cost to the families we serve.

Population(s) Served
Children and youth

Blood Brotherhood is a national program from HFA for adult men, diagnosed with bleeding disorders. It is designed to be a multi-avenue outreach, to provide education and support, promote good health, and establish a sense of community for adult men. Dads in Action is an educational and social support system designed to provide Dads with a sense of belonging as well as keys to strengthen the family unit

Population(s) Served
Men and boys

The HFSC hosts an annual Women's Retreat and Hispanic Women's Group meetings throughout the year.

Population(s) Served
Women and girls

Our holiday Snowflake Festival provides children with the opportunity to enjoy a fun-filled time with their peers, playing games and making arts and crafts. They also get the chance to sit with Santa.

Population(s) Served
Children and youth
Families

Where we work

Affiliations & memberships

Hemophilia Federation of America Member Org of the Year Award 2018

National Hemophilia Foundation: Six Star Chapter 2020

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of policymakers or candidates reached

This metric is no longer tracked.
Totals By Year
Population(s) Served

Ethnic and racial groups, Age groups, Health

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

HFSC lobbied in Washington DC to help pass the Skilled Nursing Facilities (SNFs) for Medicare beneficiaries with bleeding disorders. We are proud of our continued advocacy work to ensure health access

Estimated number of supportive policies secured for the sector

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

HFSC provided $20,000 in technological assistance in 2020 to those in covid isolation to access telehealth visits, school and our online conferences

Number of audience members willing to take action on behalf of a specific issue

This metric is no longer tracked.
Totals By Year
Population(s) Served

Ethnic and racial groups, Age groups

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

HFSC provided $18,000 in scholarships so that our youth could better access higher education.

Number of community events or trainings held and attendance

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

HFSC held a plethora of educational trainings and programs with over 1,000 members in attendance.

Number of participants counseled

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

In 2020, HFSC provided assistance to many members on insurance issues, school advocacy issues, medical provider referrals and other issues.

Number of volunteers

This metric is no longer tracked.
Totals By Year
Population(s) Served

Age groups, Health

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

In 2020, HFSC hosted over 75 volunteers to assist with its many virtual online large educational programs and events. This number decreased due to covid.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

HFSC's primary goals are as follows:
1. Support the needs of the genetic bleeding disorders community in Southern California;
2. Ensure continued access to high quality and affordable health insurance;
3. Ensure educational access to changes in treatment including gene therapy;
4. Ensure those with rare bleeding disorders are not illegally discriminated against in school or the workplace and are not detrimentally deported to countries without adequate medical treatment;
5. Build a community that is supportive and nurturing of each other;
6. Ensure that Camp Blood Brothers and Sisters remain funded and children with rare genetic bleeding disorders have an opportunity to attend camp for free;
7.Ensure that all children have an opportunity to be trained on the life-saving technique of self-infusion;
8. Ensure access to a federally funded Hemophilia Treatment Center (HTC); and
9. Ensure the voice of the rare bleeding disorder population in Southern California is heard and represented in local, state and federal government; and
10. Ensure health equity for all patients in our geographic region.

Currently, HFSC offers assistance in the areas of education, programs, fundraising, resources and financial assistance. Educational events include Industry Forum, a once a year event forum to showcase manufacturers products and programs, emPOWERment Forum, an advocacy day to teach members legislative advocacy skills, a Women’s Retreat, Family Information Day, our annual day, Back to School Symposium, to teach parents about their educational rights in public school held with our four local Hemophilia Treatment Centers (HTC's) and our new initiative, Familia de Sangre, a three day state-wide conference held entirely in Spanish. Additional programs include our Family Retreat, a weekend for community bonding and education, our medically staffed one week summer camp, Camp Blood Brothers and Sisters held in partnership with the Painted Turtle, Teen Leadership Council, a two year training program for teens with bleeding disorders that kicks off with a week long leadership, life skills and advocacy conference and finally our annual Snowflake Festival. For Fundraising, HFSC engaged in the NHF (National Hemophilia Foundation) supported UNITE walk, and is an official charity of the Long Beach Marathon. Additionally, We also host sports activities, previously known as Hemo Games, such as swimming, golf, and tennis clinics. We recently held a surf event which was hugely successful. For resources, we maintain a Family Resource Room stocked with a wealth of relevant information for our members, robust scholarships, insurance and budget counseling, educational counseling, and SSI counseling. For Financial assistance, we have an active emergency assistance program, granting up to $500 per year for families in dire need of assistance and we work together with our HTC Social Workers to determine eligibility. In 2020 we provided $40,000 in Emergency Assistance which included tech support such as free ipads and google chromebooks. We also provide any member with a free medicalert bracelet. IN 2021, we plan to focus on research initiatives that affect our local community. HFSC continues to make a strong impact and source of support for one of the largest bleeding disorders foundations in the country.

Over the last few years, HFSC has been following a slow and deliberate vision towards growth and execution in order to provide as many provides , resources and support to the rare bleeding disorders community in Southern California. Its successful implementation of its goals have been due to the following:
1. Internal infrastructure: STAFF EXPERTISE: Hiring a new Executive Director who is an attorney with background in corporate law and special ed and deep knowledge of insurance issues, patient advocacy, and health equity and hiring new Operations Manager with expertise in event planning and HR issues, Hiring a new bilingual Outreach Coordinator with expertise in social work, hiring a new Event Coordinator with background in publicity and program planning and hiring a new accountant to ensure financial integrity. Finally in 2019, HFSC hired a Development Director with expertise in fundraising in order to diversify our funding sources. BOARD EXPERTISE: A diverse board composed of people with experience in law (SSI, nonprofit law and special ed law), accounting and investments, marketing, graphic design and medical (MD-genetics and nurse). Over 21 new internal policies have been implemented to ensure cohesive and compliant infrastructure stability.
2. Community Outreach: SOCIAL MEDIA: HFSC is now represented on most channels to ensure a wider distribution and outreach to our community members: FB, Twitter, LinkedIn, Instagram, youtube MEDIA: launch of new HemoConnect e-blast newsletter. Educational programming is held in all counties at least 1-2 times per year with the exception of Inyo. Office moved to Pasadena to ensure a central location for member access.
3. Volunteers: HFSC has been able to recruit over 200 volunteers from within and outside of our community to assist with the educational programming.
4. Increase in fundraising and revenue stream has allowed HFSC to increase its educational events to over 20 per year.

Since new staff turnover in 2015 and implementing new strategic goals and vision, HFSC has successfully targeted several areas:
1. underserved Spanish speaking population in 9 counties in Southern California;
2. women and teen girls with bleeding disorders for both diagnosis and treatment;
3. outreach to teens with bleeding disorders to provide skills for successful transition to independence including life skills, career and advocacy training by creating a 2 year Teen Leadership Council
4. Ensuring students with bleeding disorders know their school based rights for people with disabilities;
5. Hiring a bilingual Outreach Coordinator (English/Spanish) with experience in social work; and
6. Hiring an Events Coordinator to assist with programming.

Looking forward HFSC plans to focus on:
1. outreach to adult males to offer additional programming including career training and support;
2. examine mental health issues and resources in our community;
3. launch local research projects that will directly impact our local community; and
3. continue to ensure access to affordable and reliable insurance.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Families, individuals and children with rare genetic blood disorders residing and receiving treatment in Southern California.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Initiated a men's support group every two months.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    We have changed programming to better serve the needs of our Spanish speaking community at our annual event: Familia de Sangre.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time,

Financials

HEMOPHILIA FOUNDATION OF SOUTHERN CALIFORNIA
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

HEMOPHILIA FOUNDATION OF SOUTHERN CALIFORNIA

Board of directors
as of 4/22/2021
SOURCE: Self-reported by organization
Board chair

Rick Kelly

Sandra Knight

Carol Jung

Kelvin Lee

Devon Rios

Silvia Garcia

Ron Staake

Richard Kelly

Wayne Guzman

Michele Warner

Shin Chen

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 04/22/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Asian American/Pacific Islanders/Asian
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 07/02/2020

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.