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-two 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 Assistant
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. She is excited to be a part of the HCC team in their important education and advocacy work.
The HCC Board
Michael has 25+ years of experience at multiple levels in the biopharmaceutical industry with extensive strategic and tactical experience in launching products for rare, chronic diseases. He also has 12+ years working as a clinical laboratory scientist with a primary focus on hematologic disorders. Michael spent over 24 years at Baxter/Baxalta/Shire. In his most recent role he was Vice President of US Market Readiness. He has dedicated his career to making sure that companies continue to be the leader in patient focused access to rare, innovative therapies. He strives to make access an integral part of all business planning and to advance and coordinate strategies that have a positive impact on patients and customers. Michael has been involved in more that 15 new and life-cycle product launches in the areas of hematology, immunology, biosurgery and COPD. Michael has now transitioned to a consulting role at The Access Group. Their overall goal is to facilitate the coordination of products, programs and resources to enhance patient access. Michael is a licensed Clinical Laboratory Scientist and has an MBA in Marketing Management.
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.
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.
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.
Amal likes to spend her free time traveling with her family and weightlifting.
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!
Matt Cianciulli grew up in Flagler Beach, Florida. He attended Colorado State University, where he completed both his undergraduate and graduate degrees. He currently resides in San Clemente, CA and spends his free time running, biking and surfing.
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.
Shellye‘s hobbies include International folk dance, geocaching, knitting, hiking, gardening, home improvement projects, and walking her dog, Hope, on the beach.
Rigoberto, “Rigo”, was born and raised in Los Angeles county and has 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 is very involved with the Hemophilia Foundation of Southern California (HFSC) having attended summer camp as a child in the mid ‘90s. Later, he helped HFSC create its new men’s group, BRO: Bleeders Reaching Out. The goal of BRO is to provide comradery and support among men in the bleeding disorders community. BRO hosts dinners, team building activities, as well as educational discussions mediated by special guest speakers.
For several years, Rigo has been involved in multiple advocacy organizations and events addressing policies that affect the bleeding disorders community. In 2017, Rigo 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. Rigo also participated in HCC’s annual California Legislative Day and joined HCC’s Advocacy Committee in 2020. He continues to expand his advocacy repertoire by serving on HCC’s Board of Directors.
Heather Mikels lives in San Diego, California. She received her Bachelor of Science degree in elementary/middle school education with minors in both mathematics and social sciences from the University of Kansas. Heather was once a middle math and science teacher, and must say she really misses teaching. Heather is a single mom of five wonderful children. The youngest is the one who introduced her to the world of hemophilia and bleeding disorders. His hemophilia was a surprise as it does not run in the family. His genetic testing lead them to know his mutation was a shift in the mainframe, and lead Heather to become fascinated with genetics and mutations, although she was certainly not an expert. Besides being busy with her five children, Heather is a competitive ocean and pool swimmer. She has raced in local, national, and world events. Heather’s favorite swimming location is La Jolla Cove. She says there is nothing that compares to the beauty, serenity, and silence of swimming there.
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.
Rick is married: his wife is a retired attorney for the California Attorney General’s office. He has a daughter who is a teacher in the Bay Area and a son who is attending UC Davis. In his free time, Rick enjoys going to Kings’ games, fishing and hanging out with friends during lunch or over a drink or two.
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.
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.