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.
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.
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.
Oscar, his wife Alicia, of 15 years, and three children, Diego, Sophia and Camila live in Downey, eight miles southeast of downtown Los Angeles. He’s a 47 year-old with severe Hemophilia A and as a toddler patient at Orthopaedic Hospital has been involved with the Hemophilia Foundation of Southern California; first, participating as a camper since 1981 and then as a board member and treasurer in the mid 1990s. In the early 1980’s he contracted Hepatitis C and HIV from tainted blood product. He currently represents the SoCal Foundation on the Hemophilia Council of California (HCC). He’s worked as a high school math teacher for Los Angeles Unified School District for 25 years. He has an undergraduate degree in Math Applied Science and Economics International Area Studies from the University of California at Los Angeles.
When Michael Bradley, HCC Board President, mentioned to Tony Carvalho that he was looking for someone with financial experience to help out on the Board, Tony was pleased to volunteer as a board member. Tony enjoys giving back to people who need it, so he supports the HCC cause of providing people with bleeding disorders access to education and advocacy skills. As a CFO, Tony brings a different perspective and financial insight into how HCC can be run better to make the organization stronger. Tony uses his unique financial perspective to figure out how he can best help the Hemophilia Council of California.
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.
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, which is where she continues to work today. 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.
Christine Gaxiola is currently a Customer Relations Specialist and Patient Advocate. To her, advocacy means everything, which is why she decided to make a career out of it. Her past 13 year experience with non-profits has included being the Director of Development for the state of California at the Pulmonary Hypertension Association and the Annual Giving Manager at Make-A-Wish, among others.
Christine has deep understanding and experience of working with board members, and she knows what is needed to be a strong advocate. She has many ideas that she is excited to share with HCC to assist with the advocacy work of the organization. Christine is also fluent in Spanish.
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.
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.
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 additions to the board of HCC. Brent earned his MBA from CSU Sacramento in 2004 and has lived and worked in London, England and Tokyo, Japan. Brent and Julia have been together for more than 17 years and live in Roseville, CA. In their free time, while not at their boys’ soccer, baseball, basketball or golf events, they enjoy everything outdoors including hiking, biking, skiing and golf. Brent is a lifelong Oakland A’s fan and has facilitated several dad’s group events at Oakland A’s games.
Nate lives in the Fair Oaks area of California with his wife Melissa and their two boys Tyler and Luca. After graduating UCLA, Nate has worked in a variety of roles in the pharmaceutical and biotech industries and has been involved in the Hemophilia community since 2008. As a volunteer, Nate has completed 9 HCC Coastal Bike Rides and, as you may imagine, is an avid cyclist. When not working he can usually be found riding his bike with his eldest son Tyler or playing baseball with Luca.
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.
Richard “Rick” Uno grew up in the Sacramento area and attended UC Davis and UC Hastings College of the Law. Rick currently is an attorney for the Department of Real Estate, which licenses and disciplines real estate licensees. Previously, he had his own law practice and was a managing attorney for the Sacramento Region Human Rights Commission. Rick has been involved in community based organizations, serving as president or board member of several non-profit organizations, as an adult leader for the Boy Scouts, as Vice President of the National Japanese American Citizens’ League and as a delegate to the White House Conference on Small Businesses.