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H.E.L.L.O Annual Statewide Conference
South Carolina’s Largest Educational Conference for the Bleeding Disorders Community
“Helping Embrace Life’s Learning Opportunities”
It’s A New Era; Living With Bleeding Disorders in a Changing Environment

  We have come a long way in bleeding disorders care and treatment throughout the past 50 years. We have traveled many roads together as a united community. Our past shares times of heartaches and huge successes, paving the way for those who are diagnosed with a bleeding disorder today, not so frightening. We still have a lot to accomplish and discover together as a community. Advocating for the bleeding disorders community remains a high priority today as we face many barriers and threats with access to treatment care. We are living in a transformational era today and we are excited, and concerned, all at the same time. Join the South Carolina community and our national partners as we come together for the 51th annual meeting of Bleeding Disorders Association of South Carolina.

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. Please be sure to read all the information about the conference and apply online. There is no cost to those affected by bleeding disorders. We can’t wait to be together again!

June 21st – 22nd 2024 (Friday, Annual Meeting – Saturday, Educational HELLO Conference)
Location: Embassy Suites Hotel & Conference Center by Hilton

670 Verdae Blvd., Greenville, SC.  29607 * 1-864-676-9090 * www.embassysuitesgreenville.com

Conference Application Information:

Hotel Accommodations Include:

A fitness center, the golf course, tennis courts, 2 pools; one indoors and one outdoors, wheelchair accessible, WiFi, and beautiful grounds for gathering and visiting with friends of BDASC.

Due to a limited budget and limited rooms, (the hotel is sold out) we will only be able to provide one room per family. Once your application is 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 BDASC Members. If you abuse this reservation by a no-show response once assigned, you will be bill for all room and food accommodations.

Guest room stays include a hotel breakfast buffet available before the morning session beginning on Saturday, June 22nd  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 mid-morning break with snacks will be provided in the Exhibit Hall. A buffet lunch will be included for all attendees. During our lunch break, you may check out of the hotel and have ample time to visit with our Exhibitor Sponsors and community members.  Saturday’s closing dinner buffet will be provided for all attendees out in the beautiful Hotel Terrace for evaluations, feedback, and connections to the community. This will conclude the HELLO Conference.

Conference Check-In/Check-Out:

Check in with the hotel begins at 4:00 pm, Friday, June 21st and Check-out is 12:00pm on Saturday, June 22nd.

Each guest will be required to present a valid credit card / debit card upon check-in, on which an amount of sufficient pre-authorization can be obtained (usually $50.00 per night) to cover any charges for the guest’s use of the hotel’s ancillary services. Please call the hotel for questions and BDASC if this will be of concern so we can make special arrangements if possible. 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. A travel grant for mileage is available upon request if needed to attend. Please call the BDASC office prior to attending for an application.

Childcare: Ages 1-11 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 always remain in the hotel. 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.

Teen Programming: Ages 12 – 18 yrs.

We will have interactive 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.

Brief Weekend Schedule

June 21st – Friday 5:30 – 9:00 pm:

BDASC Annual Meeting, Dinner Buffet & Chapter Recognitions

June 22nd – 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 at 5:30pm and lasting until 7:00pm.

Deadline for Application Registration:

Due to hotel venue requirements, all completed applications & teen programming / childcare forms must be received by Friday, May 18, 2024. You will be receiving shortly thereafter by email and phone call a conference reservations and hotel room confirmation should you need hotel room accommodations. Your application has not been accepted until you have received notice of confirmation from the chapter. If you do not receive a call or email, you have not been accepted to attend due to limited accommodations from the hotel. Limited hotel rooms are available for traveling guests and are awarded to BDASC members on a first return application basis and attendance history. (IE: If you have been a no show at events or not attended all required sessions while attending past conferences, you may be wait listed once you register until all applications are in. This is not acceptable and is a misuse of our limited funds.     

DEADLINE FOR APPLICATION SUBMISSION (day attendance only- June 14th)

We are sold out of travel grants for hotel rooms at this time and are gathering a cancelation waiting list. Please register with your preference and we will call you if we have a hotel room opening.

Friday Night Opening Annual Meeting

Join GutMonkey and BDASC for an interactive and engaging opening session that will have you up, moving, and connecting with community members. During the General Session for the Leading Edge program, we’ll focus on kicking off your time together for the weekend through games and connection. We’ll reflect on the power of gathering and set intentions for the weekend. 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. This session is part of the Leading Edge program and is made possible through the exclusive support of Pfizer.

Friday, June 21st

4:00pm:  Registration Opens

  • Exhibitor Hall Welcomes: Come meet our sponsors and prepare to learn about the current and future treatment therapies and supportive services available to our community on Saturday when the exhibit hall officially opens.

 

5:30pm: Chapter Opening Remarks and Premier Sponsor Welcomes

6:00pm: Gut Monkey Keynote Community Engagement

6:30pm: Dinner Buffet –Annual Chapter Awards and Scholarships

7:00pm: Chapter Recognitions 

  • Scholarship Awards
    • Alba Myers Lewis Academic Memorial Scholarship
    • John N Tiller Memorial Scholarship
    • BDASC Academic Scholarship
  • Welcome to New Board Members 
  • Board Member of the Year Recognition 
  • Legislative Advocate of the Year 
  • Coalition Advocate of the Year 
  • Coalition Ambassadors of the Year  
  • Junior Advocacy Ambassador of the Year 
  • Appreciation and Partnership Award 
  • Making a Difference Award 
  • Volunteer of the Year “The Fisher Award” 
  • Aaron Eugene Gossett Pillar of Strength Award 

9:00pm-10:00pm: Movie Viewing:

On the Shoulders Of Giants

For the first time in history, a generation of people with hemophilia are living past 50, This heartwarming road trip around the country reunites the survivors from past generations and shares their journey. Join us for this state viewing of this incredible look back in time, and the strength of our community. Let is all honor those who paved the way for our future today!

Educational Sessions:
Saturday Morning General Sessions

9:00 – 10:20am: Opening Keynote Plenary 

Keynote Plenary and Guests Panel Discussion: Living with Bleeding Disorders within Transformations Times

Join us for a morning plenary as we look forward to hearing from Philip and our distinguished panel as we move forward together with our visions for an era of transformational times for the bleeding disorders community. Discover and join in a robust conversation on the need for collaboration of our national organizations, national chapters, our industry partners, and the bleeding disorders community with our goals of advancing health equity and access to transformational treatment care for all individuals diagnosed with bleeding disorders. We will also hear from our distinguished panel guests within research, advocacy, access to care and treatment in South Carolina, and more.

About Philip Gattone

President and CEO of The National Bleeding Disorders Foundation

Philip is an organizational leader and communicator who understands the dynamic of a national organization and a chapter network, and he recognizes the importance of a strong collaboration between the two, He’s skilled at long-term strategy but also knows the importance of adapting and shifting throughout challenging times. Phillip joined NBDF in February and is passionate about building capabilities with an open, empathetic leadership style that can help advance NBDF’s focus of innovative, inclusive research, education, and advocacy. Gattone was president and CEO of the Epilepsy Foundation of America (EFA) from 2012-2019.

Under Gattone’s leadership and vision, the EFA experienced record growth in community engagement, strategic partnerships, marketing, programming, and fundraising. In less than 10 years during Gattone’s time as CEO, the EFA’s annual revenues expanded by more than $15 million. Additionally, Gattone successfully built alliances with multiple community partners, elevating the EFA’s position within the national and global epilepsy community. He introduced new cost-effective solutions that elevated mission impact and united the foundation. For his work, the EFA established the Phil Gattone Award for Exemplary Service to recognize his lifetime of significant achievements.

“This is an era of unprecedented opportunity, and I look forward to continuing to grow NBDF’s impact and capacity to serve our community,” Gattone said. “Together, we will break down barriers to better health and equity, and create resilient, inclusive communities where everyone can thrive.

Panel Guests:

Philip Gattone, President and CEO, NBFD

Samantha Carlson, MSW, LMSW, Director of Research, NBDF

Bill Robie, Director, State Government Relations, NBDF

Malerie Hartsell, MPH, CHES, Program Manager, Blood Disorders and Contracts, S.C. Department of Health & Environmental Control, Division of CYSHCN, Bureau of Maternal and Child Health

Robin Jones, MSN, MHA, RN, CPN, CPHON – Nurse Navigator SCHTC and Leslie Gilbert, MD MSCI Upstate HTC Director

11:00am – 12:00pm:  Voices of Our Community Plenary, part two: A conversation of Health Care Access Stories: Challenges and Successes

Engage in our live and robust conversations with BDASC members and Advocacy Coalition advocates who will lead sharing experiences of living with bleeding disorders today, and how they are navigating these challenging access to care transitions, barriers, and exciting times. This session will welcome audience participation as we learn together what we can do to shape the future of bleeding disorders treatment care access and how you can bring about change in South Carolina. Learn what we are planning next for our 2024-2025 advocacy legislative agenda.

Saturday Afternoon Breakouts – Session One
1:30 – 2:30pm 

Share Decision Making: Sponsored by Pfizer

In this session, we will take a look at what shared decision making is and how to integrate it into medical appointments. This interactive overview covers how to participate in the care team, discuss therapy changes, and find quality sources of information.

Speaker: Rachel Cooper-Leal

Rachel is a Patient Affairs Liaison (PAL) with Pfizer Rare Disease. The PAL is a field-based, non-sales, community-facing colleague who serves as the regional point of contact for local advocacy groups, patients, and caregivers. Rachel earned her Bachelor of Science degrees from Auburn University in Alabama. She has over 15 years of pharmaceutical experience, most recently in rare disease.

Fitness to Improve Mobility and Stability & Kinesiology Taping: Sponsored by Octapharma

Join Dr. Z for safe home exercises that will be presented to target the upper and lower body to prevent bleeds, improve overall mobility, and stability. This will be an interactive presentation where participants will join in exercise throughout the session. This session will also demonstrate the use of therabands, and the value of Kinesiology taping, where he will show how to tape the shoulder, elbow, wrist, neck, lower back, knees, and ankles, will while discussing the indications during acute injury. You will learn how taping will demonstrate how to reduce swelling, improve range of motion, and improve overall stability to reduce pain.

About Dr. Michael Zolotnitsky:

Dr. Z is a physical therapist from NJ living 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 ten years, he has spoken for countless organizations including HFA, Coalition for Hemophilia B, Hope for Hemophilia, and others. He currently speaks as a patient educator for Octapharma where his goals are to educate as many people as possibly therefore created a YouTube channel HemoDoc to assist those he cannot meet in person. In his free time, he loves to travel with his wife Brianna, be a good father to his newborn girl Zoey and his dachshund twins (Carson and Remi), watch football and exercise. His goal is to develop programs specific to the community and provide education to help patients live their best lives.

Mental Health: A Deeper Dive: Sponsored by NBDF

Millions of people in the U.S. are affected by mental health issues. While we have started to have more open conversations about our mental health, it is time to dig deeper and move beyond the basics. This workshop will investigate mental health issues seen in the blood and bleeding disorders community and provide innovative skills and resources to you.

Speaker: Cathy Tiggs, MSSA, LISW, HTC Social Worker, Sponsored by the National Bleeding Disorders Foundation

Cathy Tiggs is the social worker for the HTC at UH Cleveland Medical Center in Cleveland, Ohio. Cathy has worked in the bleeding disorder community for more than 15 years. She serves on several committees within the BDO community and works to create and expedite educational programs. She also provides competency training for social workers and social work managers in the areas of leadership, conflict mediation, empowerment of vulnerable populations and all other areas of influence that prepares them to effectively impact communities and families.

4:15pm – 5:00pm: Discussing Self-Infusion 

Infusions and Injections  

A look at Self- Infusions and Injections 

Infusion Session

  • Included: “Tips & Tricks” and Trouble Shooting – what do you do when there is scar tissue? How can we make the veins show up more? Are there tips to make it hurt less? What are all the locations we can use if one place does not work? How many times do you try per infusion if we fail? How do we push past the mental barriers?
  • What are the ways to increase visibility of veins?  Are their exercises that help – ones that young kids or adults could safely do? Do vein finders really work (there is an app now)?
  • Take-away documents filled with tips and tricks. 
  • Port information, and injections. Pros and cons of port vs. peripheral.  Understanding the challenges of each.  Opting for ports in adulthood.

Presented by Robin Jones, MSN, MHA, RN, CPN, CPHON, Midlands HTC Nurse Coordinator

5:30pm – 7:30pm: Closing Dinner, Hotel Outside Terrace

Learn from Our Exhibitor Hall

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 services.

Friday Welcome: 4:00 – 5:30pm
Saturday, 8:00am to 5:00pm

8:00am – 8:50am: Premier Sponsors Only

10:15am – 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

BDASC’s Annual Meeting has taken place for 51 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. 

Registration Deadline:
Date: May 18th for hotel rooms

(we are currently sold out and accepting a waiting list)

June 14th for day attendance
DATES:
June 21 – 22, 2024
Friday 4:00pm to Saturday 8:00pm
VENUE: 
Embassy Suites by Hilton Greenville Golf Resort & Conference Center
670 Verdae Blvd, Greenville, SC 29607
(864) 676-9090
Childcare Onsite Services: Ages 1-11yrs.
Provided by: Corporate Kids Events
Super Spectacular Hero Day, Kids Camp
8:30am – 4:00pm

We have contracted with Corporate Kids Events this year to care for your children ages, 1-11 years. CKE provides 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 please 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. 

Exciting Addition! The Critter Keepers of Greenville will be with us at 10:00am for their fabulous show. All kids over 1 year of age will have the opportunity to watch and participate in the show.

Teen Programming: Ages 12 – 18yrs.
Provided by: The Leading Edge Program with GutMonkey!
General Description

Join GutMonkey for the Leading Edge Program as we tackle topics like building communities, teamwork, getting clued in on current topics in bleeding disorders, and shared decision making. We’ll have you laughing, up on your feet, and making new connections in the community. We will explore these ideas using community building activities that will have participants on their feet and interacting with each other in fun and memorable ways. GutMonkey’s programs have a history of giving people skills to engage with others more thoughtfully, live their values more comprehensively, and to play more often.We’ll bring the surprises and the fun, you just bring yourself. This session is part of the Leading Edge program and is made possible through the exclusive support of Pfizer.

Teen Program Description

Join GutMonkey for the Leading Edge teen program as we tackle topics like building communities, teamwork, getting clued in on bleeding disorders (trust us, it’s more exciting than it sounds!), and shared decision making. It’s not all serious stuff! We’ll have you laughing, up on your feet, and maybe even making some new friends. We’ll bring the surprises and the fun, you just bring yourself. This session is part of the Leading Edge program and is made possible through the exclusive support of 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.

Facilitator:
Saturday Afternoon Breakouts -Session Two 
3:00-4:00pm Support Groups

Moving Forward From the WGPPM Summit: Sponsored by NBDF

The Women, Girls, and People who have or had the Potential to Menstruate (WGPPM) Summit took place in May 2023 bringing together people with bleeding disorders, health care professionals, chapter representatives, and national organizations to map out a coordinated plan for progress. This interactive workshop will highlight the outcomes of the summit and invite everyone to become part of the movement. You will walk away feeling empowered with the advocacy tools and knowledge to create change for this community.

Speaker:  Natalia Winberry, MNLM, Manager of Education for the National Bleeding Disorders Foundation

Natalia Winberry is currently Senior Manager of Education for the National Bleeding Disorders Foundation focused on mental health, joint health, and WGPPM initiatives for the bleeding disorders community. Natalia Winberry started her career as an AmeriCorps VISTA working on community outreach and continued to work in refugee resettlement for eight years by helping refugees and immigrants thrive in their new communities. She earned her graduate degree in Nonprofit Leadership and Management from Arizona State University and focused on supporting nonprofit organizations to improve accountability to the populations they serve. Throughout her nonprofit career, Natalia has worked on community development, advocacy, and social service efforts in collaboration with a wide variety of community partners.

Being Prepared for an Emergency:(Spanish Session) Sponsored by Bayer Healthcare

This session is being provided to us for our Spanish Speaking Hispanic Community to unite and support our Spanish speaking community members. The session will prepare patients and caregivers living with hemophilia and bleeding disorders with the communication and advocacy skills needed in emergency care and travel situations. This session will be provided in Spanish.

Estar preparado para una emergencia (sesión en español)

Esta sesión se nos brinda para que nuestra comunidad hispana de habla hispana se una y apoye a los miembros de nuestra comunidad de habla hispana. La sesión preparará a los pacientes y cuidadores que viven con hemofilia y trastornos de la coagulación con las habilidades de comunicación y defensa necesarias en situaciones de atención de emergencia y viajes. Esta sesión se brindará en español.

Speaker:  Speaker Barbara Castano Arrebola, Hemophilia Community Executive

Barbie is a Hemophilia Community Executive with Bayer, covering the Southeast region since Barbie comes to Bayer with over 20 years of hemophilia experience. Barbie is an active member of the bleeding disorders community and has a special place in her heart for all of those living with hemophilia. Barbie is a graduate of Nova Southeastern University where she obtained her bachelor’s degree in Education. Barbie’s passion is to empower persons to live beyond their bleeding disorders through education.

Von Willebrand Disease: A to Z: Sponsored by Takeda

Join the VWD community for an educational session on living with VWD. You will get to know the inheritance patterns and types of VWD, and its various symptoms, including those that are specific to women. Treatment approaches available to people living with VWD will be also be discussed. This session will be conversational and informative. Join the community and learn how to get involved and advance treatment care.

Speaker: Morgan Cook

Morgan 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!

“It’s Bro Time” The Blood Brotherhood

Discover and learn about the comfort of knowing there is a brotherhood of support for men affected by bleeding disorders, young and old (seasoned), in a group wrap session with blood brothers with a long history of advocacy and support within the community.

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/ 

                 2024 H.E.L.L.O. Sponsors!

With Appreciation to our Premier Sponsors!
With Appreciation to our Platinum Sponsors!
With Appreciation to Our Education Sponsors!