History & Mission
The four California hemophilia organizations formed the Hemophilia Council of California (HCC) in the 1970’s, and in 1989, we incorporated as a 501(c)3 nonprofit organization, to coordinate their shared advocacy agenda to create a more effective and unified voice for individuals living with bleeding disorders in California.
Thirty-four years later, HCC continues to pursue its mission to promote access to care and advance the quality of life for people with bleeding disorders through advocacy, education, and outreach in collaboration with our founding organizations.
Tax ID # 68-0182998
The HCC Team
Lynne Kinst was the Executive Director of Central California Hemophilia Foundation (CCHF) from July 2017 until December 2019. As Executive Director of CCHF she implemented many new programs and increased revenue by 100%. Previously she worked for California State Board of Equalization Board Members George Runner and Diane Harkey, and the Taxpayer’s Rights Advocate. As a tax services specialist Lynne worked on improving the taxpayer experience, assisted taxpayers with their concerns, coordinated educational events and worked on legislative and tax policy.
In addition, Lynne spent eight years as director of administration with a non-profit organization now known as Capitol Commission, where she supported ministry leadership in establishing ministries, partner development, fundraising, event coordination and human resources. Prior to working at the non-profit she had four years of political experience working for state elected officials in a variety of capacities.
Born and raised in Sacramento, Lynne attended the University of California, Davis earning a bachelor’s degree in political science, with minors in human development and religious studies. Lynne also has a master of arts in biblical counseling from The Master’s University.
Her father, Jim Carey, was an active member of the CCHF Board, serving as treasurer since the chapter’s founding until his death in 1994. CCHF’s Jim Carey Scholarship is named in his honor. Previously, Lynne served on both the CCHF and Hemophilia Council of California Boards of Directors. Lynne is herself a carrier of Hemophilia. She and her husband David live in Rocklin, CA with their son Zach, and daughter Ashley.
Communications & Programs Manager
Andrea has a background in advocacy, education and communications. She lives in Midtown and has been actively giving back to the Sacramento community since 2006. Andrea developed her outreach and communication skills through her work in film promotion and at a local public outreach firm. Her undergraduate degree is in Literature from UCSD. For five years she worked in logistics and planning on various film sets in the Northern California region. She graduated from the University of Wisconsin, Madison with a Masters in Spanish and worked as a Spanish tutor for more than a decade. She currently performs translation and interpretation work for a local legal nonprofit. She is excited to be a part of the HCC team in their important education and advocacy work.
Lauren D. Hay has over a decade of professional experience in the biopharmaceutical industry, spanning both consulting and private equity roles. Lauren is currently a Managing Director at Hay Advisory Corporation, a boutique life sciences consulting firm based in San Diego. Prior to founding Hay Advisory Corp, Lauren served as the VP and then Director of Investment Analysis & Research at DRI Capital, a Toronto-based $1B private equity firm focused on pharmaceutical royalty monetization.
Lauren is passionate about patient advocacy and education, particularly in rare diseases such as hemophilia, and she has helped support the development and commercialization of non-factor therapies in hemophilia. Lauren earned her BA in Human Biology with Phi Beta Kappa honors at Stanford University, and she completed her MBA with Honors in Healthcare Management at The Wharton School.
Stephanie’s involvement with the hemophilia community began in 1987 when her son was diagnosed with severe Hemophilia A. In order to deal with her son’s medical condition, Stephanie quickly learned as much as she could about hemophilia and became an advocate for her son’s care. She also served as a volunteer and Board member for her local hemophilia foundation. With a Bachelor’s Degree in psychology from Whittier College and a Master’s Degree in Marriage, Family and Child Counseling (MFCC) from Pacific Oaks College, Stephanie used her professional skills to deliver programs and services to the hemophilia community at the chapter, regional and treatment center levels. Her volunteer work with local, state and national hemophilia organizations, continued as well. Stephanie
retired from the UC Davis Hemostasis and Thrombosis Center in July 2020, after more than 30 years of working with the bleeding disorders community. Her passion for advocacy has not been diminished by retirement and she vows to continue her involvement as a volunteer with HCC for many years to come.
Rigoberto Manzo was born with severe Hemophilia A. He earned his BA in Political Science from Cal State Long Beach and is now working as a Litigation Assistant for a prestigious LA law firm. Rigo has been involved with the Hemophilia Foundation of Southern California (HFSC) having attended summer camp as a child in the mid ‘90s and volunteered for different events over the years.
For several years now, Rigo has been involved in multiple advocacy organizations as well as events addressing policies that affect the bleeding disorders community. In 2017, he participated in HFA’s Young Adult Advocacy Summit in Washington DC where he learned how to present the needs of patients with chronic conditions to Congressional representatives in order to help pass meaningful legislation. He also has participated and mentored for HCC’s annual California Legislative Day and joined HCC’s Advocacy Committee in 2020. Today, Rigo continues to expand his advocacy repertoire by serving on HCC’s Board of Directors and as an Advocacy & Access Ambassador.
Ryan Faden is a seasoned professional in health care policy and government affairs with over two decades of experience of increasing responsibility. Most recently, Ryan was the state policy lead for Gilead Sciences. His work there included advocating for access to treatment for people living with HIV and Hepatitis C.
Prior to that, Ryan worked for nearly 15 years in state government affairs for CSL Behring and the Plasma Protein Therapeutics Association. In those roles, he worked closely with bleeding disorders advocates across the country to help ensure access to hemophilia therapies in state health programs. Most notably, Ryan was a key voice in the multi-year effort to pass AB 389 in California in 2012. (“Standards of Service for Providers of Blood Clotting Products for Home Use Act”) Ryan’s prior Board experience also includes serving as Board Chair for the Carden Conejo School Advisory Board.
Ryan holds a JD from Seton Hall University School of Law, a Masters of Public Health from UCLA, and BA in History from UCLA.
Mia Castañeda was born with severe Von Willebrands Disease. She is currently a student at Santa Barbara City College majoring in Political Science. Mia has been involved with the Hemophilia Foundation of Southern California since she was 11 years old. There she found a community that drove her to find her voice, especially when it comes to advocating. Mia has participated in the HCC Future Leaders Program as a teenager, and has volunteered at many local chapter events throughout the past 10 years. She’s helped advocate in Washington DC for things like the Hemophilia SNF act that was passed by congress, and continues to have her voice heard by representatives on issues that someone with a bleeding disorder may face. Having Crohn’s disease on top of a bleeding disorder, Mia is committed to supporting anyone facing rare disease hardships as she knows first hand it is no walk in the park. She currently works for the Ventura County Professional Firefighters Association, serving approximately 500 firefighters and their families.
Cindy had worked at National Cornerstone for nine years as Client Care Coordinator. After it closed its doors in 2018, she began work as a Specialty Pharmacy Account Manager for Brothers Healthcare. Currently, she works for Profusion Specialty Pharmacy. For Cindy, it was her son, Eric, and his hemophilia diagnosis 16 years ago that started her journey within the hemophilia community and has led Cindy to where she is today. Her journey began as a family affair after having learned of Eric’s diagnosis, participating in every event available to them, including attending family camp, which truly helped their family and especially Eric grow stronger together. Early on in their involvement within the community, Cindy became very aware of the need for additional support for our Latino community, specifically with providing easy access to information and resources in Spanish. This realization developed her motivation to become an educator and a resource for support in the Spanish speaking community. In this effort, Cindy became a volunteer with HFNC for 14 years. Her experience has ignited a desire to walk through every open door and accept every challenge that allows her to continue supporting this community in every way. Cindy is honored and proud to serve on the board of HCC!
Amal Estrada is currently the owner of EasyGo, a convenience store. She has over a decade of experience as a small business owner. Amal is actively involved in her neighborhood as a booster of LAPD Rampart station.
Amal holds a B.A. in Mathematics and a M.S. in Kinesiology. She is a mother of 2 and is actively involved with her children’s school as head of the PTA.
Amal’s brother is affected by Hemophilia which inspired Amal to get involved in the Hemophilia community. She devoted many summers to being a camp counselor throughout Southern California and continues to support her local chapter in San Diego. Amal has seen the challenges faced by her community which led her to become passionate about patient advocacy, education, and access to care.
Shellye Horowitz is the Associate Director of Education at the Hemophilia Federation of America. She has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family, impacting both men and women. Shellye has given presentations and worked on committees focused on increasing awareness of diagnosis and treatment for women with bleeding disorders. Shellye wrote a column for Hemophilia News Today that addressed issues regarding women and bleeding disorders called “The Forgotten Factor”.
Prior to her work in hemophilia, Shellye had over 25 years of experience in the field of K-12 education, working as both a school counselor and principal. She worked in three US states and was Head of an American international school abroad.
Greg Hunt is a Policy Advisor at the Department of Health and Human Services. In this role, Greg works on human services policy issues, covering issues such as child welfare, senior nutrition, and issues involving persons with disabilities. Greg received his Bachelor of Science from the Schar School of Policy and Government at George Mason University. He earned his Master’s of Public Administration from the Biden School of Public Policy and Administration at the University of Delaware, and a Master’s in defense and strategic studies from the United States Naval War College.
Carson is a Santa Barbara County native, born with Severe Hemophilia A. Inspired by his involvement in HCC’s Future Leaders program, he earned his BA in Political Science, with a minor in Anthropology and Geography, from Cal Poly – San Luis Obispo. Since his introduction to the bleeding disorders community as a summer camper at age 8, he has volunteered at community events across Southern California. He has been involved in a variety of advocacy organizations. supporting the Hemophilia Foundation of Southern California (HFSC) and National Bleeding Disorders Foundation (NBDF) throughout his youth.
Today, Carson continues to expand his advocacy skillset to represent the bleeding disorders community of California, working in state politics and engaging with HCC as an Advocacy and Access Ambassador and serving on HCC’s Board of Directors.
Elaine has been caring for hematology oncology patients for over 15 years. She received her nursing education from the University of San Francisco and Dominican University of California.
Her areas of clinical focus include, hemostasis thrombosis, hemoglobinopathies, and marrow failure. She has academic healthcare leadership experience and is knowledgeable in hospital, university, and 340B operations.
She is currently working in biotech overseeing clinical education for bleeding disorder patients in the CA-HI region.
Previously, she served as the Program Manager for the Stanford Hematology Program and held roles in the Nursing Workgroup for the Western States Regional Hemophilia Network (WSRHN) and the National Hemophilia Federation.
Mosi has Severe Hemophilia A with an Inhibitor. Born and raised in Oakland, he first got involved with the Hemophilia community by attending camp at age 5! He has volunteered in the community for the past 26 years, presenting at local events, NHF and WFH. Previously, he was Vice President of the Hawaii Hemophilia Foundation Advisory Board. He currently serves as a Co-Coordinator of the Junior/Assistant Counselor Training Program at Camp Hemotion, and is also a Board Member of the Northern California chapter. Mosi works as a public school counselor and a social worker at UCSF HTC.
Brent has more than 14 years as a vocal and involved advocate for the bleeding disorders community. He has spent the past 10 years in the biopharmaceutical industry in various commercial roles with Baxalta/Shire/Takeda and currently Sanofi Rare Blood Disorders. Brent’s involvement in the community began 14 years ago when he was dating his wife, Julia Seaton, whose father Bob is a severe hemophiliac. Brent and Julia are now parents to 2 young boys with severe hemophilia, Lawson 10 and Prescott 7.
With the birth of Lawson and Prescott, Brent’s involvement in advocacy and patient representation only deepened. He was HFNC program support person of the year in 2014 and the Northern CA leader of HFA’s Dads in Action Program from 2014-2016. He has been committed to helping other dads of children with rare bleeding disorders connect, share, and learn how to advocate and support each other since 2013. Brent’s tremendous passion for the rare bleeding disorders community and experience in strategic planning and advocacy are great contributions to the board of HCC.