The South Carolina Hemophilia and Bleeding Disorders Advocacy CoalitionThe 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 2023 Sponsors for supporting our advocacy program and the NHF State Based Advocacy Coalition!
Novo Nordisk, INC. (Founding sponsor), Bayer Healthcare, CSL Behring, Genentech, The Hemophilia Alliance, Sanofi Genzyme, 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. Learn how you can help make a difference—join our advocacy efforts today!
Please register before the closing date: October 19th (travel accommodations)
SpringHill Suites by Marriott, Greenville Downtown
200 E. Washington St. Greenville, SC 29601
Friday: Check in 4pm – Check out Saturday noon (except for those staying 2 days)
Saturday Education Day: 9am to 4pm
Dinner Celebration:– 5:30pm – Downtown Greenville, Ink and Ivy
Join the South Carolina Advocacy Coalition, Ambassadors, and members of the community as we come together to celebrate the advocacy work of the many members of the bleeding disorders community who work hard to address barriers in access to care and treatment, and to raise their voices of concerns to promote needed change. Learn how to be involved and what you can do to shape the future of treatment care for all affected by bleeding disorders in South Carolina and around the nation. Registration is limited and hotel rooms are provided for our traveling guests. All meals are included, with a private dinner Saturday night in Downtown Greenville.
Friday, November 10, 2023
4:00pm: Hotel Check In
BDASC Registration Begins Pre-Function Hall Birch Ballrooms
(Throughout the Evening)
5:00pm: Cocktails and Social Engagement Pre-Function Hall Birch Ballrooms
6:00pm: Opening Welcomes and Sponsor Recognition Welcomes – Birch Ballroom A & B
6:30pm: Buffet Dinner Opens – Pre-Function Hall Birch Ballrooms
7:00pm: The Patient Voice: Cristal Day
7:05pm: Setting the Stage for Success: Special Guest Speaker
Moving A Bill Through Committee to the Governor’s Desk; The 2024 Legislative Landscape
Setting Goals for Success; Straight from the Source
Words of Encouragement
Recapping 2023 Advocacy Successes / Stakeholders Report
Sue Martin, BDASC Executive Director, State Coalition Lead
9:00pm: Social Free Time
Saturday, November 11, 2023
7:00 – 8:15am: Breakfast Buffett (Oak & Honey Restaurant)
8:15am: Teens and Tweens: Teens Leadership Alliance Check in (Hive-A-Way Room) (Entrance is next to the Valet Parking- Outside)
Morning Sessions – Birch Ballroom A & B
8:30am: The Patient Voice: Sue Martin
8:35am – 10:00am: South Carolina Hemophilia Treatment Centers; Access to Care and Treatment Updates
Dr. Shayla Bergmann, Director Pediatric Nonmalignant Hematology, MUSC
Dr. Leslie Gilbert, Lead Hematologist Prisma Health HTC Upstate,
Dr. Stephanie Ambrose, Medical Director & Robin Jones, Nurse Coordinator, Prisma Health HTC Mid-State
Understanding Today’s Healthcare Environment, Challenges with Access
10:00am – 10:30am: Break and Open Exhibits
10:30am: The Patient Voice: Whitney Galloway
10:35am – 11:45am: Understand Accumulator Adjustments: What is Needed for Successful Policy Change
Accumulator Adjustment Programs; Deep Dive; Lessons Learned
11:45 – 1:00pm: Lunch Buffet and Open Exhibits (Hotel Check Out)
(Lunch buffet held in the Bee Hive Room)
Afternoon Sessions – Birch Ballroom A & B
1:00pm: The Patient Voice: Kristin Shelton
1:05 – 2:00pm: Next Steps; Passing a Bill in SC
Melissa Compton, Executive Director, Lone Star Bleeding Disorders Foundation
Julie Fredericksen Jones, Executive Director, Texas Central Bleeding Disorders
Josie Gamez, NBDF & Former Legislative Staffer
2:00pm: Break and Open Exhibits
2:30 – 3:50pm: Direct Targeted Messaging; Marketing and Education Awareness
Wrapping Up: 2024 Priorities: Capital Visits and Meetings
3:50pm: The Patient Closing Voice: Warren Ingrum
4:00pm: Tween and Teen Certificate Presentation
5:00pm: Dinner Event, Downtown Greenville at the Ink N Ivy Restaurant third floor private dinning space, 21 E Coffee St, Greenville, SC 29601
Appetizers begin at 5:00pm with Dinner Buffet at 5:45pm
Please bring your tweens and teens, ages 11 to 18 yrs as we continue to build the future voices in leadership for South Carolina’s Bleeding Disorders Community. We are excited to announce we are hosting this day event concurrently during our adult sessions and bringing in from Oregon some advocates who have been part of great advocacy leadership programs. Our Teen Leadership Alliance program provides leadership training to tweens and teens in transitioning to adulthood and develops advocacy skills for those affected by bleeding disorders themselves or within their families. They will find out more about their important role in the government process and to effectively advocate for themselves and their families through all areas of life. Together, this interactive and fun day will build connections within our community tweens and teens, and can have lasting memories of bonding with others with the same understanding of living with bleeding disorders within their families. The program will provide them a voice in leadership and what is important to them. Our older teens will also provide mentorship with the younger tweens during the event programming.
James Romano: BDASC Legislative Coordinator
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.
if you don’t see your county represented, consider joining our robust advocacy program and be a voice for your community! Contact Sue Martin, Advocacy Coalition lead to find our how you can get involved today!
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
Ric Martin, representing Greenville County
Taylor Upton, representing Anderson County
Christine Evans 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 Aiken 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 Lopez and Sarali Hcosta representing Newberry County
James and Waltene Whitmire representing Richland County
Rimica Brown representing York County
Kristin Shelton, representing Fairfield / Richland County
Mike and Brent Maloy representing Dorchester County
Woody Ford representing Horry County
Whitney Gallaway representing Horry County
15th – Advocacy Coalition Call
Additional Advocacy Events in 2023 – to be scheduled throughout the year!
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. MORE>>
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. MORE>>
Bleeding Disorders Association of South Carolina is a 501(c)3 non-profit organization and a chapter of the National Hemophilia Foundation and a member organization of Hemophilia Federation of America.
Copyright © 2023 Bleeding Disorders Association of South Carolina. All Rights Reserved.
