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The South Carolina Hemophilia and Bleeding Disorders Advocacy Coalition

The Coalition’s Mission: To Empower the Hemophilia and Bleeding Disorders Community in South Carolina to speak to public and private decision-makers about improving Access to Quality and Affordable Health Care and Treatment.

We are thankful to the Advocacy Coalition Committee Members who came together from all regions throughout the state and nationally to form the South Carolina Hemophilia and Bleeding Disorders Advocacy Coalition (SCHBDAC). Our commitment to the Bleeding Disorders Association of South Carolina and all South Carolinians affected by bleeding disorders is to improve access to Quality Care and Treatment. Improving lives is our mission.

We are very grateful to our 2021 Sponsors for supporting our advocacy program and the NHF State Based Advocacy Coalition!

Novo Nordisk, INC. (Founding sponsor), Bayer Healthcare, BioMarin Pharmaceutical Inc.,  CSL Behring, Genentech, Grifols, The Hemophilia Alliance, Pfizer Inc., Sanofi Genzyme, Spark Therapeutics, and Takeda for their support of the National Hemophilia Foundation State Based Advocacy Coalition (SBAC) program.

Learn about them here by clicking on their logos in this program!

Bleeding Disorders Association of South Carolina is a proud recipient of the Advocacy & Public Policy Chapter of Excellence Award of the National Hemophilia Foundation in recognition of our commitment to advocacy and education initiatives both at the state and local level, aimed at improving the lives of those in the bleeding disorders community. We scored in the top 15% of Chapters who participated in the review process. Learn how you can help make a difference—join our advocacy efforts today!

 2021 Advocacy Calendar of Events

2021 Stakeholders Meeting (virtual) 

November 13 at 10:00am

View the Agenda (coming soon)

Meet the South Carolina Advocacy Coalition Members

Chair – Cristal Day – Pickens County

HSC Executive Director – Sue Martin – Greenville County

Advocacy Coalition Consultant – Jeremy Williams – Greenville County

HSC Member – Renita Johnson – York County

HSC Member – Shelley Crisp – Berkeley County

Secretary – Wendy Legrand – Berkeley County

HSC Member  – Greg Witul – Anderson County

HSC Member – Robert Butler – Lexington County

HSC Member – Joey Krakowiak, MD – Greenwood County

Stakeholder Members

  • Nathan Schaefer, Vice President of Public Policy, National Hemophilia Foundation
  • Kimberly Ramseur, Senior Manager, Policy and Advocacy, Hemophilia Federation of America
  • Kollet Koulianos, Senior Director, Payer Relations, National Hemophilia Foundation
  • Drew Clawson, Kinard Consulting, SC PhRMA Alliance Development
  • Sean Singh, Vice President Operations, Hemophilia Alliance
  • Annissa Reed, State Policy Manager, Eastern US, National Organization for Rare Diseases
  • Kerri Nelson, South Carolina State Ambassador, Rare Action Network, National Organization for Rare Diseases
  • Erin Foote Morgan, Partnership Director, Chronic Disease Coalition
  • Alison Clifford, Director, Therapeutic Advocacy and Policy, Takeda
  • Marcus Downs, Associate Director of U.S. Public Affairs, Southeastern Region, Takeda
  • Tony Mitchell, Senior Manager of State Government Affairs, Southeastern Region, CSL Behring
  • Karla White, Senior Manager for U.S. Patient Advocacy, CSL Behring
  • Vitoria Cunningham, Government Affairs, Pfizer
  • Melissa Bishop-Murphy, Senior Director, National Government Relations & Multicultural Affairs, Pfizer
  • Gina Marie Dalferro Truslow, Senior Manager, Patient Advocacy Relations, Genentech

Advocacy Ambassadors

A vital component of the Advocacy Coalition is the Ambassador Program, which comprises volunteer members in leadership positions tasked with establishing a strong grassroots network of bleeding disorders advocates throughout the state.  Ambassadors serve as liaisons between the Advocacy Coalition and the public, focusing on increasing awareness of rare bleeding disorders and the challenges individuals and their families affected by them face. They also function as “county captains,” meaning that they serve as a regional or county resource and connection for people who have been, or have family members who have been, newly diagnosed, or who, for whatever reason, simply need information about issues (e.g., school nursing; educational resources; clinics and hospitals) relevant to bleeding disorders, particular to that county or region of the state.  If you would like to be put in touch with someone in your county who may be a helpful source of information and support to you and your family, please contact the chapter, and we will put you in touch with someone who can help.

All Congressional Delegations are NOW Represented 

18 Counties Represented by Advocates

Upstate

April Baird representing Laurens County

Virginia Snead representing Laurens County

Martha Breitweiser representing Pickens County

Mike and Ann Ravan representing Spartanburg County

Mike Walden representing Union County

Felicia Alexander representing Greenville County

Meggan Burton representing Greenville County

Eric Dunton representing Spartanburg County 

Michelle Jackson representing Abbeville County

Corrie Snider representing Spartanburg County

Mandy Weber representing Greenville County

Brenda and Leroy Garrett representing Laurens County

Dana Gurley representing Anderson County

Midstate

Christine Evans representing Lexington County

Tameelah Dawson representing Lexington County

Jameelah Malcolm representing Lexington County

Robert Butler representing Lexington County

Gene Wilson representing Lexington County

Ward and Marilyn Keith representing Lexington County

Tiffany Maness representing Richland County

Brantley Smith representing Richland County

Mattie Watkins representing Richland County

Bonnie Phifer representing Richland County

Jean Ford representing Sumter County

Edna Rabb representing Fairfield County

Holly Penfield representing Lancaster County

Demetrio Lopez and Miguelina Huerta representing Newberry County

Rolando Lopex and Sarali Hcosta representing Newberry County

James and Waltene Whitmire representing Richland County

Rimica Brown representing York County

Lowcountry

Paige Hughes representing Berkeley County

Laurie Thompson representing Berkeley County

Mike & Sherlene Maloy representing Dorchester County

Tim Swanburg representing Dorchester County

Woody Ford representing Horry County

Samantha Javorka representing Dorchester County

 

Become an Advocacy Ambassador

Patient Advocates and Stakeholders Meet In Greenville To Discuss 2020 Outlook
By Jeremy Williams

On Friday, November 8, more than 30 advocates, healthcare professionals, policy experts, government officials, and industry representatives met in Greenville to continue ongoing discussions begun at HSC’s “South Carolina Bleeding Disorders Challenge” forum in 2018, regarding access to healthcare for persons with bleeding disorders living in the state. The day kicked off with heartfelt and moving personal stories from four HSC advocacy members: Cristal Day (Advocacy Coalition chair), Jameelah Malcolm, Eric Dunton, and Meggan Burton (Advocacy Ambassadors). Each of them offered compelling life lessons involving their (and their family members’) persistence in confronting the challenges of living with a bleeding disorder.

Read More Here

GOVERNMENT OFFICIALS, MEDICAL & POLICY EXPERTS, AND PATIENT ADVOCATES MEET IN COLUMBIA FOR BLEEDING DISORDERS FORUM

(Greenville, South Carolina) — On Thursday, August 16, and Friday, August 17, 2018, approximately 47 policy experts, government officials, medical professionals, and bleeding disorders advocates, met in Columbia, South Carolina, to address access to healthcare issues at a forum titled The South Carolina Challenge, coordinated by Hemophilia of South Carolina (HSC) and their Advocacy Coalition.

Read More Here