Meet The Board
Meet The Board
You are here:
Rigo Manzo was born with severe Hemophilia A, but was diagnosed at the age of 3. He earned his Master of Public Administration degree from Cal State Long Beach and is now working as a Litigation Assistant at a LA law firm. Rigo attended summer camp as a child and has volunteered for different events over the years with the Hemophilia Foundation of Southern California (HFSC).
Rigo has served as a BDCC Board member and has been involved in multiple committees for BDCC including the advocacy committee, where many health policies that affect the bleeding disorders community are addressed. He has also served as a mentor for BDCC’s Future Leaders Program and is an Advocacy & Access Ambassador. Rigo is committed to helping the BDCC through its advocacy and education efforts in order to help empower the patient population in California.
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.
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.
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.
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.
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.
Jamie Hoberman brings more than three decades of nursing experience across perioperative care, utilization management, and healthcare quality improvement. She has spent the majority of her career as a perioperative nurse in both ambulatory and inpatient surgical settings, caring for patients across a wide range of specialties including orthopedics, urology, gynecology, spine, plastics, and general surgery.
In addition to her extensive clinical background, Jamie has held leadership roles including charge position, unit-based council lead, quality improvement project leader, and preceptor for new nursing staff. Her experience also includes utilization management and review roles, supporting appropriate, patient-centered care coordination.
Jamie is deeply committed to patient advocacy, education, and volunteer service. She looks forward to contributing her practical frontline perspective and leadership experience to the Bleeding Disorders Council of California in support of individuals and families affected by bleeding disorders.
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. Greg works on human services policy issues in this role, 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.
Greg and his family are longtime residents of Alexandria, Virginia. He is a member of the United States Naval Institute, the Naval War College Foundation, the American Society for Public Administration, the Association for Public Policy Analysis and Management, and the Kappa Delta Pi Honor Society in Education.
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.
Christine Mc Alister is a Special Education Teacher for the Elk Grove Unified School District. She has been teaching for over 25 years.
Christine’s nineteen-year-old son, Mason has Hemophilia A. He was diagnosed at birth due to a family history of Hemophilia. He is currently attending Yuba Community College where he is a pitcher on the school’s baseball team.
Christine and her son have attended Legislative Day since Mason was in elementary school. Mason has also been a Future Leader for the past five years. These marvelous experiences have given him the self-advocacy skills and confidence to pursue his life goals.
She appreciates all of the support and guidance she and her family have received from the Council. She is looking forward to working for the benefit of such a wonderful community.
Zuiho “Z” Taniguchi has been involved in the bleeding disorders community for over 30 years in roles ranging from HTC Regional Administrator to Camp Hemotion director. One of his biggest passions is hemophilia summer camp and the impact it makes on adolescents living with bleeding disorders.
Originally from Alameda CA, Zuiho participated in one of the first Future Leaders Days back in the early 2000’s. He has also served on numerous local and national boards, most recently with the Hemophilia Foundation of Nothern California.
He is currently employed with Hema Biologics where he works as an account manager. Zuiho is happily married and has a 8 year old daughter Akaly Taniguchi who is also a community member
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 29 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 15 years experience as a vocal and involved advocate for the bleeding disorders community. He has spent the past 11 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 15 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 11 and Prescott 8.
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.
