Our Board of Directors are responsible for the governance of the organization and work closely with our staff. The board members and executive director meet monthly to discuss the direction, governance, programs, services, and support for the organization and its members. We accept applications at any time and review as new board positions become available. If you are interested in applying for a board position or have any questions, please download the application or contact the Chapter at: email@example.com.
Aaron resides in Columbia, South Carolina with his wife and two sons. He works in the Information Technology department at BlueCross BlueShield of South Carolina and is currently an IT Manager. When their son was diagnosed with severe Hemophilia, the Smith’s decided to get involved with the Chapter. With no known family history, the Smith’s focused on learning as much as possible and being engaged in advocacy. Knowing that their experience has been drastically different than those before them, they have devoted themselves to ensure families affected by bleeding disorders can continue to obtain the help and resources needed to live in their new normal life. When not working or in Chapter events, Aaron enjoys spending time with his family, doing anything outdoors, and fixing things around the house.
Board Member of the Year 2023
Edna lives in Winnsboro, South Carolina. She has a daughter and an adult son who lives with Glanzmann’s Thrombasthenia. Edna worked in manufacturing for over 30 years and then worked in home health care and for the board of disabilities for South Carolina for another eleven years. She is now retired and loves assisting the Bleeding Disorders Association of South Carolina Chapter and their members. Edna loves listening to music and dancing in her spare time.
Joey resides and works as a family doctor in Aiken, SC with his wife and two children. Joey has a 2-year-old son with severe hemophilia and a 5-year-old son not affected. He serves on the board to advocate for his son and others with bleeding disorders so everyone can have the appropriate treatment and care they deserve. Joey enjoys hiking, running, bowling, rowing, board games, and spending time with his family.
Samantha resides in Summerville, South Carolina with her husband and three kids. Samantha’s youngest daughter was diagnosed with severe Von Willebrand disease (vWD) when she was a year old. Her diagnosis was a surprise to everyone since no one in her family has the disorder. Samantha and her family recently moved to South Carolina from Michigan and began becoming involved with BDASC immediately. Samantha looks forward to advocating for those diagnosed with bleeding disorders and VWD. Samantha has a background in graphic design and is enjoying exploring South Carolina and all it has to offer with her family. Samantha looks forward to connecting more with the BDASC family.
Taylor resides in the Upstate in the quant town of Belton, SC. At the age of 8, Taylor was diagnosed with Von Willebrand disease. She has spent most of her life proving she can live life without letting her disorder hold her back. As a teenager she watched her sister advocate for her while learning about her disorder which has given her the ambition to fight hard for those affected. Having the desire to start a family of her own is what has really driven Taylor to want to help people understand Von Willebrand disease and expand the research. Taylor has recently been diagnosed as Type 1C after being diagnosed with Type 3 for over ten years. She is excited to be a part of BDASC to share her story, encourage others to advocate for themselves by sharing the tools she has, and continue to grow her own knowledge. Taylor attended Tri-County Technical College in general studies and is currently a Territory Manager for Southland Consultants/Owl Music Company. She lives with her husband Jonathan, and her stepdaughter Sadie.
Cristal resides in Easley, SC. She has 3 children. Her adult son has severe Hemophilia A and both her adult daughters are carriers. After experiencing the heartbreak of 1980s with our community, she is driven to make sure everyone has access to safe, lifesaving medicines, and that no one is punished for having a genetic disorder that with consistent and appropriate care, they can live a normal, productive life.
2021 Ambassador of the Year
Sherlene Maloy lives in Summerville, SC and has been a lifetime member of the organization. She has a family history of hemophilia and a son affected. Susie, as she calls herself, has a strong passion for educating others about bleeding disorders and advocating. She is the recipient of the 2021 Ambassador of the Year Award of BDASC and its Advocacy Coalition. Susie loves volunteering for the Chapter and helping make a difference in the lives of community members affected by bleeding disorders in South Carolina.
New to the board in 2021, Christine and her family reside in Columbia and relocated many years ago from their home country of Kenya. Christine has been a long-time member of the Chapter with family affected by severe hemophilia. She works as a Registered Nurse within the Mental Health field and has a strong desire to improve the mental health needs of the Bleeding Disorder community.
New to the board in 2021, James and his wife reside in Irmo, South Carolina. James has a daughter that currently attends Georgia State University as a doctoral candidate. He has a family history of Hemophilia with his maternal Grandfather, 2 brothers, nephews, and cousins that lived with severe Hemophilia. Within the Hemophilia community, James participated in an Ambassador Program that focused on improving access to care and diversity. He gained experience and exposure in understanding the challenges that individuals living with Hemophilia face each day. James would like to help with the outreach programming within the community and engagement. Over the past 25 years, James has served as President of his community’s HOA, Mentor with Richland /Lexington School District 5, Chairman of Richland/Lexington Airport District, and Managing Partner of Integrity Tax & Bookkeeping in Columbia. In his spare time, he enjoys traveling and golfing as regular as possible.
April resides in Clinton, South Carolina.
Suzanne (Sue) Martin, Executive Director and Ex-Officio Board Member. The NHF 2016 Award of Excellence, Advocate of the Year.
Sue is the chief administrative officer for BDASC and as such, is responsible for the management and supervision of all operations in accordance with the intent of the board of directors, and consistent with the organization’s by-laws and state regulations. She has been in Chapter services for over 28 years since the diagnosis of hemophilia in her three sons, with no known family history. She has a degree in Health and Human Services / Child Development, and prior to her time in chapter services, she worked with the developmentally challenged for the state of California and was a small business owner for 17 years. Sue has led the organization to receive several national awards which includes being recognized as a Five-Star Chapter of Excellence of the National Hemophilia Foundation (NHF), 2016 NHF Award of Distinction in Communications – Website Design and Outreach Video, NHF 2019 Award of Distinction Health Education and John Indence, Award of Excellence – Bleeding Disorders Awareness month, and the 2020 Hemophilia Federation of America Chapter Spotlight Award. Sue is a co-author of the National Research Blueprint for inherited bleeding disorders featured in the Expert Review of Hematology. She is a member and adviser to the Chapter Services Organization (CSO), which represents over 45 bleeding disorders organizations in the US, and is a member of several working groups of the National Hemophilia Foundation and Hemophilia Federation of America. Sue has a strong passion for advocacy and access to quality treatment care, and is a leading member of the Chapter’s State Advocacy Coalition. “I love to see individuals find their voice and watch them grow within their bleeding disorders journey. I am blessed to call this community my extended family”. Sue resides in Greer and enjoys boating and an outdoor lifestyle in her spare time with her husband, 5 children and 11 grandchildren. She can be reached at Sue.firstname.lastname@example.org or 864-350-9941.
As the Engagement Coordinator, Samantha is responsible for Social Media and Marketing for events and campaigns that are being hosted by BDASC. She utilizes social media and e-newsletters to encourage the bleeding disorder community of South Carolina to be active participants in the Chapter through educational and advocacy events. Samantha has been part of the BDASC community since April of 2021 and a part of the global bleeding disorder community since 2015 when her daughter was diagnosed with VonWillebrand disease with no known family history. She has a degree in Computer Graphics Technology from Purdue University and until recently she was a stay-at-home mom to her three children. “I enjoy engaging with the community, even virtually. I felt like I had a purpose in the bleeding disorder community since Daphne was diagnosed. I’m excited to help out BDASC in any way that I can.” Samantha resides in Summerville and enjoys exploring all the amazing things the low country has to offer with her three kids and her husband.
James Romano is the founder of Care & Cure Partners. Care & Cure Partners works to advance the advocacy, nonprofit, fundraising and government relations needs of their clients. James has over 25 years’ experience working with nonprofit organizations in a government relations and advocacy capacity. Throughout his eventful career, James has worked for a Member of Congress, nonprofit organizations and a Washington, DC lobbying firm. James brings this experience to the benefit of the Care & Cure Partners clients.
James began his career in patient advocacy at the age of 19. As a freshman in college, James skipped class and went to Capitol Hill, where he advocated for the passage of the Ricky Ray Hemophilia Relief Fund Act (Public Law 105-369) on behalf of the Hemophilia Community and his family members with the blood clotting disorder. Because of his family members with rare and chronic conditions. James devoted his professional life to advancing public policy to removing barriers to access of needed health care.
In 2005, James became the Director of Government Relations and Advocacy at Patient Services Incorporated. From that position, James built relationships with multiple state and federal policymakers as well as nonprofit organizations. James focused on issues involving health insurance coverage and access to treatments and therapies including promoting the charitable assistance model. James is an expert on patient assistance issues.
Jim Lane has been the organization’s accounting and bookkeeping specialist for the past 10 years and is the owner of Lane Financial Services in Greenville.
Richard is the organization’s webmaster and is responsible for the maintenance and design communications of the website. He is the owner of Blotter.com.
To achieve the Bleeding Disorders Association of South Carolina’s (BDASC) mission and vision we believe we must be a diverse, equitable, and inclusive organization so that we can best address the health inequities, health disparities, and to support the needs of our community.
For Diversity, we recognize and value the diverse experiences and backgrounds of our board of directors, staff, and those we serve. We strive to ensure that our leadership team is reflective of the communities that we serve.
With Equity we recognize inequities exist for marginalized groups and this directly contributes to disparities in access, treatments, and opportunities, for those we serve. We strive to create an environment where equity exists and our community thrives.
By Inclusion we recognize the importance of valuing and belonging. We strive to make space for policies, processes, spaces, and efforts where our members and community are valued and included.
These start with leadership, where we cultivate diverse leaders and visible representatives within all levels of the organization. We continue with hosting educational sessions on diversity, listening session inclusiveness, and celebrating events our members hold dear. We strive to create an environment that allows every member of the community to fully participate and contribute. All these tenets are typified by our logo.
Our new logo has embracing graphics that wrap around the Blood Drop (like arms) showing our all-inclusive mission in serving all bleeding disorders, without any bias of race, gender, ethnicity, social and economics class. The way the arms cross gently in the center is a symbol of UNITY. The rounded tip of the blood drop characterizes warmth and kindness. The font is big and bold showing our strength and honor to be recognized without mistake as, BDASC. In the full design, the arms in the middle are hugging the A, representative of a group of people organized for a joint purpose. The A is joining together the arms with a connection and cooperative link between people with bleeding disorders and those living in the state of South Carolina. We are a people-focused organization and the arms graphic unites the left and right sides together. Wherever you are in South Carolina or whatever bleeding disorder you are affected with, you are united within the Bleeding Disorders Association of South Carolina.
*All donations are tax-deductible and our Tax ID # is 23-7400632.
We embrace and celebrate diversity, equity, and inclusion; we strive to eliminate health inequities, health disparities, while we endeavor to become a leading organization in our community and the State of South Carolina. We embrace “People Centricity”, bringing our members and their families into the forefront of all we can accomplish together. We embrace research for a cure and support the ongoing efforts of our national organizations and companies striving to find better treatment therapies and one day a cure.
Addressing Bias. To assure that individual and institutional bias do not exclude any members of our organization from full participation in all aspects of the organization’s management, programs, and activities on the same basis.
Centering. We recognize that our organization includes everyone. However, we commit to centering and being particularly sensitive in our Diversity, Equity, and Inclusion work to the pain, frustration, and anger of anyone who believes, correctly or incorrectly, that he or she has been a victim of bias.
Transparency. We commit to open, on-going communication to maintain an equitable and inclusive environment. We also commit to receiving and incorporating feedback when we fall short of that effort or lack clarity in our work.
Accountability. We commit to holding ourselves and each other responsible for comments and actions that don’t sit right. We will use “I” statements and verbalize our feelings of discomfort in the moment.
Specificity. We recognize that some policies and procedures may have unintended negative effects on our Diversity, Equity, and Inclusion efforts. We commit, therefore, to careful consideration of the consequences of any new policy or procedure and to evaluating existing policies and procedures in order to identify the impact of specific policies on all of our members.
Realistic. We acknowledge the possibility that the process to address Diversity, Equity, and Inclusion might not immediately address all challenges that our organization, employees, and community could face, while also recognizing that those challenges may affect our ability to meet Diversity, Equity, and Inclusion goals. We also recognize that the environment outside of our work, such as systems that drive inequalities, will likely continue to evolve. We commit to being nimble in our efforts to address the most pressing needs of the current time.
Values. We understand our values and Standards of Behavior and will work to center those Values and Standards on equity and inclusion. We remain open to suggestions for changes to either value statements or standards of behavior.
Acceptance. We acknowledge and accept that the organization that exists at the beginning of this process might be different than the one we become at the end. We welcome this journey.
Empathy. We will listen to the stories of those who might have been marginalized and will not deny their lived experiences. Their stories are not subjective. Their stories are true, and likely reflect others’ experiences who are unable to be vocal or do not feel safe.
Individualism. We agree not to fall into the trap of tokenizing. We value individualism and acknowledge that one person does not represent the beliefs and actions or lived experiences of an entire group.
Bleeding Disorders Association of South Carolina (BDASC) is a 501 (C) 3 Non-Profit organization and is a Chapter of the National Hemophilia Foundation (NHF) and a Member Organization of Hemophilia Federation of America (HFA). In 2021, BDASC officially changes it name from Hemophilia of South Carolina (HSC) to Bleeding Disorders Association of South Carolina (BDASC) to reflect a more inclusive name of the people we serve and whom are part of our membership. HSC was founded in 1973 by a group of parents interested in promoting awareness, providing group support, and assisting other national hemophilia organizations. The organization for 42 years existed as all-volunteer; providing programs and education, support, and advocacy for access to care at the state’s capitol. Today, BDASC serves all 46 counties in the state, currently providing education and support services to over 1,000 individual members and their families. BDASC provides the most current information and education in topics related to bleeding disorders, treatment therapies, health care access, and advocacy awareness. The organization today has one full time executive director and a part-time engagement coordinator and legislative advocacy consultant. BDASC relies on a strong volunteer base of its membership.