HEMOPHILIA FOUNDATION OF SOUTHERN CALIFORNIA

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.