In 1973, Hemophilia of South Carolina was founded by a group of parents interested in promoting awareness, providing group support, and assisting other national hemophilia organizations in an effort to support their children and other families in South Carolina who had hemophilia. Join us as we celebrate our 50 Year Anniversary of the organization, now known as the Bleeding Disorders Association of South Carolina. In an effort to enjoy a weekend of celebrating the efforts of so many in this community who have been members throughout the years, and the countless hours of work and advocacy efforts by staff and volunteers throughout the history of the organization , we will be hosting a Friday night Masquerade Gala Event in commemoration entitled; “Behind Every Mask Lies A Story; Our 50 Year Legacy”. We invite the entire South Carolina Bleeding Disorders Community on June 9th beginning at 5:30pm, to join us as we celebrate with Big Time Entertainment, our fun and interactive Photo Booth, and share the stories of the past. Let us celebrate, and continue for the next 50 years to support our mission; to raise awareness for, and advocate on behalf, of persons with bleeding disorders and their families; provide education and supportive services; and promote ongoing research to improve the quality of life for those affected.
BDASC’s Annual Meeting has taken place for 50 years now and provides the South Carolina bleeding disorders community the opportunity to come together and network, learn, and enjoy the empowerment of education and support. The presentation of the Chapter’s Annual Awards are provided on Friday night; including our awarding of college scholarships, introducing new board members and celebrating those who have served. A keynote speaker presentation is always a highlight for attendees as we search hard to bring in the very best and most current information in bleeding disorders. A teen track is provided concurrently with our adult programming. The HELLO Conference allows for attendees to enjoy a learning environment with educational presentations and breakout sessions. Information on current and future treatment therapies and bleeding disorders services are made available during our exhibit hall experience. Registration is required with BDASC for attendance. All meals, sessions and childcare are included with hotel accommodation available for our traveling guests. The event is free of charge for BDASC members.
Disclaimers: As with all BDASC meetings, your personal information is secured only with the chapter. No personal information gathered or used by BDASC during the event will be shared with outside parties or vendors. BDASC will endeavor to ensure that all online meetings are safe and secure to the best of our abilities. Several waivers will be included and must be completed with your application once accepted, including teen and childcare services. We hope you will plan to join us!
5:30pm – Friday Night Annual Meeting Celebration Welcome and Chapter Recognitions
9:00am – 4:00pm – Saturday Sessions and Breakouts
5:30pm – Dinner wrap-up in the outside hotel terrace
9:00am – 10:30am: Opening Keynote Plenary – Our Past, Present, and the Future of Bleeding Disorders Treatment & Care, Presented by “Bobby” Duc Tran, MD, MSc, Assistant Professor, Department of Hematology and Medical Oncology Hemophilia of Georgia Center for Bleeding Disorders
Learn about the evolution of treatment care throughout the past 50 years and hear stories from our community members of what treatment care was like, and explore what our community looks forward to in the future.
Bobby” Duc Q. Tran, Jr., MD, MSc, serves as Assistant Professor in the Department of Hematology and Medical Oncology at Emory University School of Medicine. Dr. Tran works at the Comprehensive Bleeding Disorders Clinic and teaches hematology and medical oncology fellows. Dr. Tran received his MD from the University of South Carolina School of Medicine. He completed his residency in Internal Medicine at the University of South Florida and Moffitt Cancer Center in Tampa, where he served as chief resident. He completed his fellowship in Hematology at Winship Cancer Institute of Emory University.
Moderated by Sue Martin with Panel Guest Speakers
11:00am – 12:00pm: BDASC’s Advocacy: Past, Present, and Future, Presented by the SC Advocacy Coalition, James Romano, BDASC Legislative Coordinator, and BDASC’s advocates. Own Your Path presented by Brendan Hayes and Heather Hicks, NHF.
Learn and celebrate our bleeding disorders community’s rich history of successful advocacy throughout the past 50 years while hearing BDASC’s advocacy accomplishments for the South Carolina Bleeding Disorder Community. Learn about the advocacy needs we face today, barriers with access to care, today and in the future, and learn how to become involved and have an impact on your future healthcare. Hear from community members and why they are involved in advocacy.
Learn about the newly developed “Own Your Path” of the National Hemophilia Foundation.
1:30pm – 2:30pm:
Learning the Science of Kinesiology Taping, Presented by Mike Zolotnitsky, Sponsored by Octapharma
Kinesiology taping is an interactive presentation where demonstrations of how to tape the shoulder, elbow, wrist, neck, low back, knee, and ankle will be performed while discussing the indications during acute injury. Taping will demonstrate how to reduce swelling, improve range of motion, and improve overall stability to reduce pain.
Dr. Michael Zolotnitsky is a physical therapist from NJ with severe hemophilia. He has worked with countless individuals living with bleeding disorders assisting in exercise prescription, kinesiology taping, aquatic physical therapy, and more. For the past eight years, he has spoken for countless organizations including HFA, The Coalition for Hemophilia B, and more. In his free time, he loves to travel with his wife, be a good father to his dachshund twins, watch football and exercise.
Shared Decision Making and the Shift to Person Centered Care, Presented by Brendan Hayes, Sponsored by the National Hemophilia Foundation
You are the subject matter expert of your and/or your child’s bleeding disorder. And, as the subject matter expert, you are the center of your care network and a vital member of the shared-decision making process. This workshop will explore the shift towards person-centered care and outline the concepts of shared-decision making. In addition, you will gain advocacy and communications skills as well as important resources.
Brendan Hayes is the Senior Director of Education – Innovative Therapies at the National Hemophilia Foundation. Her focus is on developing accurate, accessible, non-biased educational content on gene and innovative therapies, strengthening collaborations with national rare disease and patient advocacy organizations, and ensuring the voices of those with lived experience help to drive content creation. Brendan serves on national committees, task forces and working groups focused on gene and innovative therapies for rare disorders. Brendan is an MPH candidate with a concentration in Public Health Leadership.
Women Who Bleed – Women Carriers, Presented by Linda Casto MSW, LISW-S Program Coordinator Hemostasis and Thrombosis Center Nationwide Childrens Hospital, Sponsored by Bayer Healthcare
This session empowers women to know the meaning of their hemophilia and bleeding disorders carrier status and understand bleeding and treatment options. It will explore issues important to women carriers whether they are symptomatic or not and includes genetics, carrier testing, the emotional impact and recognition of symptoms and treatment. The program focuses on going beyond that carrier status, getting tested, knowing that women may need to treat depending on their factor levels.
Linda Casto is the Program Coordinator for Nationwide Children’s Hospital and is responsible for the overall coordination and implementation of the Hemostasis and Thrombosis Program. She also includes clinical social work services to hemophilia patients and their families.
Childcare Onsite Services:We have contracted with Corporate Kids events this year to care for our children ages, 1-12 years. They provide a wealth of experience and the total care you need to enjoy the annual HELLO Conference as your children enjoy activities designed for them. All children enrolled in the “Kids Camp” will need to be registered and a consent form MUST be filled out and sent in to the chapter for all children attending. Limited space is available so register early. You can read about Corporate Kids Events in the links below and access the consent form which must be filled out and sent to the chapter prior to the event. This year the kids will be entertained with:
Winning the gold medal was never so much fun! Kids create their own countries, flags, and uniforms before they compete in the “wackiest” and funniest Olympic events ever.
Special programming also includes:
For Tweens – ages 8-12yrs Sponsored by Optum: Presented by Jordan Martin & Janet Rivera
1:30-2:30pm – Broadway Bound
“Experience theater and develop self-expression through interactive confidence-building activities and improvisation. Participants will work together to boost confidence, embrace positive responses and be creative.”
Leading Edge Program with GutMonkey!For this year’s Leading Program, participants will explore “systems”, or the small ways in which we live our lives, and what it says about who we are and our future goals. Sourcing research and considering ideas from James Clear’s bestselling book Atomic Habits, this year’s program will look at connecting and creating community with others, identifying the current habits and systems we use and how that informs who we are, considering the difference between a “goal” and a “system”, building helpful systems to become the people we want to be, and reflecting on ways to maintain those systems as we go out into the real world. We will explore these ideas using games and community building activities that will have participants on their
feet and interacting with each other in fun and memorable ways.
WHO IS GUTMONKEY!
GutMonkey is an adventure education company, whose mission is to provide foundational, life changing experiences for communities with chronic health conditions that improve health outcomes, build communities, dismantle stigma, and increase awareness. Through our partnerships, GutMonkey has helped more than 25,000 patients with chronic health conditions build community and improve health outcomes by creating
innovative and transformative experiences. For more than 20 years, GutMonkey has served patients, aged 7 to 70, in all 50 states and across the diagnostic spectrum of bleeding disorders and other chronic medical conditions. Gutmonkey has brought Leading Edge to the bleeding disorder community for 16 years thanks to the generous partnership and sponsorship of Pfizer. Leading Edge is an experiential education program that tackles some of the most current and pressing challenges in the bleeding disorder community through deeply engaging education programming, and was the first national program offered by GutMonkey. Leading Edge is offered to chapters as a teen program, keynote speech, parent program, and/or general session. Through games, activities, discussions, and meaningful experiences, participants are able to learn about current topics related to their bleeding disorder, consider their personal health goals and outcomes, and connect with other people in their community in a lasting and meaningful environment.
From day one, GutMonkey has been able to offer these wildly popular programs in the bleeding disorder community for free across the country. This has only been possible through the exclusive support provided by Pfizer.
When registering for the Annual Meeting, please register your teens to be enrolled in this fabulous program. The two consent forms below must be completed and returned prior to attending. These can be filled out once your application is confirmed and can be accessed online below or mailed to you upon requested.
3:00pm – 4:00pm:
Advocating in the ER, Presented by Heather Hicks, Sponsored by the National Hemophilia Foundation
Having to advocate for yourself or a loved one’s care can be difficult, especially in an urgent situation! This workshop will cover how to prepare in advance for an emergency, and provide information to help you navigate difficult situations that you may encounter when you are in the emergency room.
Heather Hicks is an enthusiastic and dedicated Manager of Education at the National Hemophilia Foundation, where she has been making a significant impact on the lives of individuals with bleeding disorders. She skillfully manages the NYLI program for young adults, fostering the development of leadership and advocacy skills among the next generation. Additionally, she oversees the Own Your Path program, which aims to support young adult males with hemophilia in adhering to their treatment regimen as they transition to independent living. Heather holds a B.S. in Molecular and Microbiology and a Master of Public Health, which has provided her with a solid foundation in both the scientific and public health aspects of her work. With a rich 17-year career in the field of education, Heather leverages her extensive experience and expertise to create meaningful, engaging, and empowering learning experiences for those affected by bleeding disorders, ultimately helping to improve their quality of life and well-being.
A Challenging Bleeding Disorder: Von Willebrand Disease (vWD), Moderated by Sue Martin and Samantha Javorka, with Robin Jones, Midstate HTC nurse coordinator, Shonequa Smith, LMSW Midstate HTC, with Leslie Gilbert, Medical Director, HTC Prisma Health Upstate
The vWD community is unique in their experiences with their bleeding disorders. With the wide variety of von Willebrand disease categories; Type 1, 2 with subtypes, type 3, and all with different severities, including difficulties within testing accuracies, the vWD community faces many obstacles to treatment care and are sometimes left feeling frustrated, unheard, dismisses, or alone. Come together with other members of the South Carolina vWD community to share and learn how to best advocate for yourself or your loved one’s needs. A variety of situational scenarios will be discussed with participants leading the discussions on how they found solutions living with this complex condition and what they feel is still lacking for the vWD community. We will engage in conversations with our healthcare providers, learn what perspectives and challenges they see in treatment care, and discuss how together we can strive to meet the needs of this community.
Newer Members Greetings: Chapter Resources, Advocacy, and More
Learn about the Chapter’s resources, support groups, financial aid, scholarships and more. Engage in round table conversations of your choice with members of the community. Enjoy sharing experiences of living with bleeding disorders. Learn how do get involved in advocacy. Meet our staff and board of directors and share your thoughts. What is on YOUR mind? What can we do to support you and your family.
4:15pm – 5:00pm: Discussing Self-Infusion and Learning How, Presented by Robin Jones, Midstate HTC Nurse Coordinator
5:30pm – 7:30pm: Closing Dinner, Hotel Outside Terrace
Exhibitor Hall Hours: Come learn about the current and future treatment therapies in the pipeline and supportive services available to our community as you explore and speak one-to-one with our sponsors in healthcare treatment therapies and service
8:00am – 9:00am: Premier Sponsors Only
10:30am – 11:00am: All Levels Exhibiting
12:00pm – 1:30pm: Lunch Exhibiting all levels
2:30pm – 3:00pm: All Levels Exhibiting
4:00pm – 5:00pm: Final Exhibiting All Levels
Join us as we come together in unity and EMBRACE the opportunities of learning, connecting, sharing and networking within the bleeding disorders community. Hear from experts in the field of bleeding disorders care and treatment. There is no other event like this one in our state. You will leave feeling empowered with support and knowledge. Please join us and see what it is all about! This opportunity is free to those affected by bleeding disorders.
Hotel accommodations include: A fitness center, the golf course, tennis courts, 2 pools; one indoors and one outdoors, wheelchair accessible, Wi-Fi and beautiful grounds for gathering and visiting with friends of BDASC. Due to a limited budget, we will only be able to provide one room per family. Once your application s accepted, you will be provided a hotel room reservation which will cover the hotel room and tax only for the number of days assigned. Two room suites have a sofa bed, microwave and small refrigerator and can sleep up to a maximum of 6 guests. Room accommodations are single king or double/doubles. Rooms will be assigned upon a first-come, first-serve basis to qualified attendees. You may reserve extra rooms, (at your cost) stay an extra day, or arrive a day early if you choose by calling the hotel directly once you are confirmed to attend and a room is reserved for you. BDASC rooming rate may be applied if the hotel has room availability.
Guest room stays include a hotel breakfast buffet available before the morning session beginning on Saturday, June 10th at 7:00 am for you to enjoy at your own schedule. There is no breakfast meal scheduled for those not staying in the hotel. A buffet Lunch on the Run will be included for all participants after the morning educational sessions during lunch break with ample time to visit with our Exhibitor Sponsors and community members. Saturday’s closing casual dinner will be out in the beautiful Hotel Terrace for evaluations, feedback, and connections to the community. This will conclude the HELLO Conference.
Check-In / Check-Out: Check in with the hotel begins at 4:00 pm on Friday, June 9th and Check-out is Saturday, June 10th by 12:00pm. (unless you are staying an extra night) You may wish to check out before the educational sessions; however, you may utilize the hotel for the remainder of the day.
Travel grants for mileage is available upon request if needed to attend. Please call the BDASC office prior to attending for an application. Each guest will be required to present a valid credit card upon check-in, on which an amount of sufficient pre-authorization can be obtained to cover any charges for the guest’s use of the Hotel’s ancillary services. Please call the hotel for questions or the BDASC office.
Childcare: Ages 1-12 yrs. Your children are very precious to us and we have taken great care and costs to provide you ease of mind during your educational empowerment on Saturday. We have contracted again with Corporate Kids Events, INC. www.corporatekids.com & www.conferencechildrencare.com. If you are using our kids camp daycare accommodations, you must fill out the informed required consent and return it prior to attending the conference. YOU MUST PRE-REGISTER, and sign all forms. You are also responsible for all your children during the two-day event. YOU MUST remain in the hotel at all times. Please also be mindful of the high cost per child so please take into consideration with last minute cancellations where we cannot fill your child’s reserved spot. Space is limited and additional children may be on a waiting list. The childcare schedule and consent forms are on our website page.
9:00am-4:00pm: Teens 13-18 years– will have classes and fun activities during the adult sessions especially designed for them. This year, The Leading-Edge Program, designed by Gut Monkey, will be hosting the Teen Program. Please register your teens on the registration online form. Please note we are not responsible for your teens during these session times. They will be on their own in participation but we will have adult leaders and chaperones attending these classes. Several waivers will be required for attendance and are located on the website under the teen programming. They must be signed and sent back before attending the teen program.
Check-in with Bleeding Disorders Association of South Carolina is required and begins at 4:00 pm on Friday and will be across the atrium area in front of the meeting room for our Annual Meeting event. Your folders and name-tag will be provided. Rules for all hotels are the same; no children are allowed to stay in the rooms unaccompanied by an adult.
Brief Weekend Schedule Review:
June 9th – Friday 5:30 – 10:00pm pm: BDASC Masquerade Party and Celebrations, Annual Meeting Dinner and Recognitions; 50 Year Legacy Stories
June 10th – Saturday 9:00am – 7:00pm: HELLO Conference Education Day Schedule: Morning sessions will begin at 9:00am and run until 12:00pm for everyone with afternoon breakout sessions from 1:30-4:00pm. Exhibit Hall hours will be scheduled throughout the day. All meals and snacks are included. Our closing day casual dinner event will wrap up the Education Day Conference beginning around 5:30pm and lasting until 8:00pm.
***Deadline for Registration: Due to contractual restraints, all completed registrations must be received by Friday, May 19, 2023. You will be receiving shortly thereafter by mail and/or phone call, a room confirmation should you need hotel room accommodations and/or phone call that your registration has been reserved for attendance. Your application has not been accepted until you have received notice of confirmation from the chapter. Limited hotel rooms are available for traveling guests and are awarded to BDASC members on a first return application basis, and qualifications.
Directions:
From I-85 N: From Anderson-I-85 N towards Greenville. Take exit #48B/US-276 W/Greenville onto Laurens Rd (US-276W) then turn right onto Verdae Blvd. Hotel is on the right. Parking: Self-parking and free.
From I-85 S: From Spartanburg-Take I-85 towards Greenville. Take exit #51/I-385/Greenville/Columbia onto I-385 N towards Greenville/Downtown. Off at exit #37/Roper Mountain Rd. Turn left continue as the road turns into Verdae Blvd. Go 1 mile and hotel is on the left. Parking: Self-parking and free.
From I-385 N: From Columbia/Charleston-Take #51/I-385/Laurens/Greenville to the left onto I/385 N. Get off at exit #37/Roper Mtn. Rd. Turn left onto Roper Mountain Rd. Continue straight as the street turns into Verdae Blvd. Go I mile and hotel is on the left. Parking: Self-parking and free.
From I-385 S: From Greenville-Take I-385 towards Columbia. Take exit #37/Roper Mtn. Rd. Turn right onto Roper Mtn. Road and follow onto Verdae Blvd. Go I mile, hotel is on the left. Parking: Self-parking and free.
Fun weekend activates available: Greenville’s Falls Park and Liberty Bridge. http://www.fallspark.com/Greenville Downtown and the Greenville Zoo. http://www.greenvillezoo.com/
Greenville Swamp Rabbit Trail. http://greenvillerec.com/swamprabbit
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.
See our brochure (PDF) to learn more: DOWNLOAD
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