Don’t miss out! Registration closes on March 13, 2025, or sooner if the event fills up. At that time, we will gather a waiting list for any cancellations that occur and give you a call.
All events at BDASC are offered free to our members unless we need to offset rising event costs. For this event, there is a one-time fee of $25 per party. Space is limited, and registration will be confirmed on a first-come, first-served basis, so don’t wait—secure your spot today! (Event Fee Sponsorships are available for those wishing to apply for an event waiver. Contact Sue for information on applying – 864-350-9941) We can also provide Travel Grants (Gas Cards) for those traveling more than 150 miles round trip or for those who need assistance to attend. Would you be interested in learning more and making a request? Let us know in the registration link as you register.
After our opening welcomes and dinner, we will travel next door for a fun and interactive night of “Group Therapy” where we will Unwind, Indulge, and let Loose; the ultimate destination for a perfect blend of relaxation and exhilaration. Located in the heart of Greenville, Group Therapy offers a one-of-a-kind experience with a mix of food, cocktails, and an array of activities to elevate your socializing game to a whole new level! We will enjoy together some WACKY MINI-GOLF, AXE THROWING, DIGITAL DARTS and more! This is a perfect time to connect and meet other adults in the community while indulging in these fun activities!
On Saturday night, we’ll enjoy an exciting group activity and dinner off-site at Topgolf of Greenville, sponsored by CSL Behring and BDASC. No need to worry about your golf skills—this event is all about having fun! Whether you’re swinging a club for the first time or are a seasoned golfer, the atmosphere is relaxed and inviting. Each climate-controlled hitting bay offers year-round comfort, and you’ll be able to enjoy the game while watching HDTVs in every bay and throughout the sports bar and restaurant. It’s a great chance to unwind, connect, and enjoy a delicious meal together in a lively, upbeat setting.Off site at Top Golf of Greenville, Saturday night, sponsored by CSL Behring and BDASC. At Topgolf, there’s no pressure to have a good golf swing or score a lot of points. It’s all about everyone having fun.
Each of our venues features climate-controlled hitting bays for year-round comfort with HDTVs in every bay and throughout our sports bar and restaurant.
This event is sponsored by BDASC and CSL Behring.
We’re thrilled to invite our adult members, ages 18 and up (with an adult 21+), who are living with bleeding disorders, are carriers of a genetic bleeding disorder, or are caretakers of someone affected by a bleeding disorder to come together for a truly special weekend! This event promises to be a one-of-a-kind experience where you’ll connect with others who share your journey, recharge, and make lasting memories.
Whether you’re looking for a refreshing break from daily responsibilities, an opportunity to meet new friends, or a chance to strengthen the bond with your partner, this weekend is for YOU! Parents can relax and recharge, while single men and women have the chance to connect, share experiences, and support one another. Together, we’ll celebrate our shared strength and support our von Willebrand community.
Start planning your weekend getaway now and join us for a time of growth, connection, and fun. We can’t wait to see you there!
What to Expect:
This is your chance to take a well-deserved break while being part of a powerful community. Enjoy the beauty of the city and the opportunity to recharge your mind, body, and spirit.
Join us for Caregivers Compass where experiential education meets heartfelt conversations. During this program, we’ll delve into the intricacies of how children process new information, empowering caregivers to guide youth with confidence through different stages of their development. We will explore decision-making processes tailored to understand children’s unique developmental journey, and consider the many ways of unlocking their full potential. Participants will learn about “motivator styles,” gaining invaluable insights that will shape the way they nurture and support youth in our community as they transition into adulthood. Participants should prepare to step out of their comfort zone as they learn and connect with fellow caregivers and parents in their area who share similar experiences and challenges.
Join us as we come together to create a supportive community where every caregiver and parent can find the tools, encouragement, and camaraderie they need to help their children thrive.
Session Highlights
Deeply engaging content, activities, and conversations around the challenges and rich experience of being a caregiver to a child or an adult loved one with a bleeding disorder.
● Educational Insights: Your knowledgeable GutMonkey facilitator will share valuable information about supporting youth with bleeding disorders. Learn about youth development and child psychology through the lens of the bleeding disorder experience – delivered in a hands-on and experiential way for deep impact.
● Supportive Community: Connect with other families and caregivers in the bleeding disorders community, fostering a sense of camaraderie and understanding. Share experiences, stories, and triumphs, knowing you are not alone on this journey.
● Celebrating Resilience: Commemorate the resilience of the bleeding disorders community through inspiring moments shared during the event.
Von Willebrand Disease and Ultra Rare Bleeding DisordersAdvocacy: Choice or Challenge
During this session we will discuss ways to advocate for yourself or your loved one in many settings that you might encounter. This will include advocating in the school setting, the Emergency Room, during your HTC visit and other areas.
Session Two:
If You (or a family member) have vWD or a Rare Bleeding Disorder, How Would You Handle…
During this session we will work in small groups to solve some day to day issues that may come up when you have a vWD or a Rare Bleeding Disorder. This will be an interactive session, and we can make it what you want it to be.
Presented by BDASC and facilitated by Sue Geraghty, RN, MBA.
Sue worked as Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombosis Center for 25 years where she retired in 2013. She has over 45 years of nursing experience and currently she is working as an independent consultant in the areas of hemophilia and health care education. During her time as nurse coordinator at the Hemophilia Treatment Center she sat on several national committees including the Nursing Working Group for the National Hemophilia Foundation. Her areas of interest within the bleeding disorder community include new families affected with a bleeding disorder and adult patient issues, women with bleeding disorders, patients with inhibitors, and orthopaedic issues. She has an associate degree in nursing from Lander College, a Bachelor’s degree in nursing from the University of NC Charlotte, and a Master’s in Business from the University of Colorado Denver. Sue continues to educate and speak at many bleeding disorders camps, chapter meetings, and national conferences. Her passion for bleeding disorders and patients is spoken in every talk she provides. We are grateful to have her back with us again! She will lead our VWD sessions and more.
Stuck on you: K-tape basicsMen’s Session: This workshop teaches teens, families and adults about kinesiology tape (K-tape). Topics explore the makeup and uses for this therapeutic tape. Discussion includes how professionals also may use it. Individuals also learn how to apply and safely remove K-tape. The session includes a demo and hands-on interaction.
Presented by Optum and facilitated by:
Dr. Angie Forsyth, PT, DPT is an internationally recognized leader and educator in bleeding disorder physical therapy. She has nearly 30 years of experience specializing in bleeding disorders and orthopedics, including 18 years as a Hemophilia Treatment Center PT in Pennsylvania, Delaware and Illinois. Angie has held leadership positions in WFH and NBDF and has authored more than 25 peer-reviewed journal articles.
Yoga where you are: linking mind, body and breath in your everyday life This workshop teaches teens, families and adults about the link between mind, body and breath. Groups learn the different forms of yoga breathing and the benefits of working with their breath. Participants will explore variations to traditional yoga practice, including using a prop such as a chair or the wall to support yoga poses.
Presented by Optum and facilitated by:
Karen Leaming is a 500-hour certified yoga teacher with over 13 years teaching experience and owner of Ananda Yoga and Wellness. Trained in the Vinyasa style with an emphasis on therapeutic application, she loves teaching all student levels. Karen is passionate about creating an environment where yoga is accessible to everyone and focuses on creating a safe, non-judgmental and inspiring space where you can truly let go, be yourself, and connect to mind, body and spirit.
Women Matter in Bleeding DisordersWomen’s Session: Women with bleeding disorders face unique challenges that are often unrecognized or underappreciated. We will learn to understand some of the special challenges faced by women with bleeding disorders and identify options for emotional support within the community.
Presented by Takeda and Facilitated by:
Morgan Cook, Community Education Specialist, joined the Takeda team in 2022. Being a part of Takeda’s Community Education Specialist (CES) team allows her to continue to give back to the bleeding disorders community, by playing an integral part in educating and supporting patients on their journey and living their best, healthy life. As a person with VWD, as well as marrying into a family of bleeders, Morgan believes this is just as much of a personal journey as it is for her to help others. Outside of work Morgan enjoys spending time with her husband and their fur baby, Cooper. Together they collect vinyl records and can often be found listening to their vastly dynamic collection. Morgan is also an avid reader and loves to repurpose and refinish furniture in her garage workshop!
The Joint Movement Series: Mind Over MatterMen’s Session: Gather for conversations and enjoy learning about the bond between the Body and the Mind. This session will be an interactive joint health workshop designed to help you keep moving. This program features insights from musician Max.
Presented by Sanofi and Facilitated by:
Shelby Smoak, a North Carolina native, is an advocate, a writer, a musician, and a person with Hemophilia B. His book Bleeder: A Memoir (Michigan State University Press) received praise from sources as diverse as The Minneapolis Star Tribune, Library Journal, and Glamour, and has won several awards, including “Best of the Best” by the American Library Association. He was also featured on local TV and radio, including NPR for his book and music. He has recorded 6 albums, released numerous singles, and performed over 500 shows along the Eastern Seaboard. Awarded a Pen/American grant for writers living with HIV, Smoak holds a Ph.D. in Literature and an M.A. in English. He works as the North and South Carolina Community Relations and Education Manager (CoRe) for Sanofi.
Join us for round table discussions of shared stories and lived experiences: Discuss with our HTC how to get an appointment and carrier level testing, learn about the clinics for women who bleed combined with an OBGYN. When do we test our carrier children, or adults, and should they all be followed by an HTC? How do we make that happen? What about insurance challenges, do we need a diagnosis? This session will be facilitated by those in attendance along with our HTC staff and BDASC. This session will be an open discussion on the needs of our women who bleed that do not have a diagnosis of VWD.
Presented by BDASC and The Hemophilia Treatment Center
A look at Self- Infusions and Injections for adults
Bleeding Disorders Association of South Carolina is a 501(c)3 non-profit organization and a chapter of the National Bleeding Disorders Foundation and a member organization of Hemophilia Federation of America.
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