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H.E.L.L.O: BDASC Annual State-Wide Conference
Helping Embrace Life’s Learning Opportunities

Research: providing Brighter Tomorrows

“We wanted to personally thank you for your continued generosity to support research through the Judith Graham Pool (JGP) research fellowship program.  We cannot emphasize strongly enough how important your support is to the continued success of our JGP fellows and to the advancement of the innovative science they are pioneering.  Your support directly impacts people living with inheritable blood disorders by accelerating the cutting- edge science that is revolutionizing treatments and health care.  We are truly grateful for your partnership and commitment to advancing research and the careers of the promising researchers that you support.  Today’s support is making tomorrow’s medicines a reality right now. Supporting the JGP is so critical to ensuring that innovative science continues to advance, and that innovative scientists are able to launch their hematology careers.  Your whole-hearted support for the mission and your enthusiastic engagement is equally critical to our collective success. I wanted to express my deepest gratitude for making me feel so incredibly welcomed into the organization and the community.  I’ve truly found my home here!” ~Kevin Mills, NHF, CSO

BDASC’s Annual Meeting has taken place for 49 years 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!

Quick Agenda: 

6:00pm – Friday Night Annual Meeting, Keynote, and Chapter Recognitions

9:00am – Saturday Sessions and Breakouts

5:30pm – Dinner wrap-up in the hotel terrace

Educational Sessions:
Saturday Morning Keynote Speaker 
NHF’s National Research, Blue Sky Vision

Presented by Kevin Mills, PhD, Chief Scientific Officer, National Hemophilia Foundation

We are very excited and honored to have Kevin Mills, the Chief Scientific Officer of NHF,  share with our community the research collaboration and national Blue Sky Vision for the future of the Bleeding Disorders Community. Learn about the development of the national vision, how it all began, how the community was involved, and where future research will involve the voices of our community. We will also hear about the “Community Voices in Research”.

About: Kevin Mills, PhD  joined the National Hemophilia Foundation as chief scientific officer. A graduate of University of Colorado Boulder, MIT, and Harvard Medical School, Dr. Mills is responsible for overseeing NHF’s research strategy, including developing and expanding the foundation’s research capabilities, and setting research goals.

Dr. Mills brings more than 20 years of experience in biotechnology, hematology, and oncology to the role. In 2005, Dr. Mills joined the faculty at the Jackson Laboratory in Bar Harbor, Maine and led a laboratory focused on the biology of DNA repair in hematology and oncology. In 2012, he co-founded Cyteir Therapeutics, a biotechnology company developing and commercializing new therapies targeting DNA repair pathways. As Cyteir’s chief scientific officer, he led the team that brought a first-in-class RAD51 inhibitor into clinical trials. Dr. Mills subsequently joined Civetta Therapeutics as chief scientific officer.

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Friday Night Opening Presentation: Together, We Have Come a Long Way

The bleeding disorders community has a long history of advocacy that began with the voices of many diverse individuals all coming together to advance access to quality care and treatment.  As we venture into our future and continue to advocate for research in treatment for enhancing the quality of life for all those affected by bleeding disorders, the community voice should be at the forefront, having a seat at the table for conversations and education on what is most important to those affected.  Hear about the rich history of our community’s advocacy with Hemophilia Federation of America, and how you and your family can help lead the way to advance the national blueprint in research, treatment care, and equal access to it for everyone affected.

Presented by Sonji Wilkes, Vice President, Public Affairs, Hemophilia Federation of America

Then join us on Saturday morning as we continue the conversations with our members of the community in this informative panel discussion~

Understanding our Diverse Perspectives: How Individual Experiences Strengthen a Unified Voice

This session will focus on “sharing our stories” as an avenue for building advocacy awareness. Every person sees the world differently. Diversity leads to better, more informed decision-making by increasing the perspectives being considered. It spurs creativity and innovation, and it bolsters our voices as advocates. This panel discussion will help us explore how things like gender, race, age, socio-economic status, type of healthcare coverage, and distinct disease states inform how we advocate, and how listening to one another makes us stronger and can faciliate changes within our healthcare systems for access to quality care and treatment.

Moderated by BDASC’s South Carolina Hemophilia and Bleeding Disorders Advocacy Coalition with – Sonji Wilkes, Vice President, Public Affairs, Hemophilia Federation of America

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Gene Therapy Jeopardy 

Expand your gene therapy research knowledge with this fun new experience from BioMarin to make the science behind gene therapy research memorable and entertaining. Whether you’re already a whiz or are just starting to explore, you and your friends can learn together and earn points to win bragging rights. Participants will also have time to ask question they may have about gene therapy during this session. Will you become the next Jeopardy Gene-ius?  Join us and learn what gene therapy is all about and test your knowledge in this fun and interactive session.

Provided by BioMarin, Presented by Dr. Kimo Stine

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Women Who Bleed – Women Carriers

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. Brings moms of hemophilia patients together to gain real-life, practical tools for success while building connections for a lifetime. Session offers moms a space to share their Bleeding Disorders experiences, shift their mindset, and acknowledge their power. Great program for women to advocate for themselves.

Sponsored by Bayer, Presented by Barbie Arrebola

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Infusion Class – There’s No Place Like Home; Self- Infusion at Home

Objectives for this class will be to understand the impact homecare has on persons with bleeding disorders, review the benefits and risks and when is an appropriate time to start, explore options for alleviating needle phobia, discuss the transition to self-infusion, and discuss options for administration of factor concentrated and novel therapies in the home setting and the education required. Individual one-to-one training will also be available after the class discussions.

Sponsored by HFA, Presented by Sue Geraghty, RN, MBA

Registration Deadline Date: May 19th (for rooms)
DATES:
June 10-11, 2022
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:
Corporate Kids Events
“Super Spectacular Hero Day”
8:30am – 4:00pm

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 meeting 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. Kids, ages 6-12yrs will have the opportunity to also enjoy our VIDEO TRUCK experience during the morning hours along with a day of fun and activities for all kids enrolled with Corporate Kids staff!

Teen Programming:
Leading Edge Program with GutMonkey!

We are excited to bring back GutMonkey and their Leading Edge Teen Programming to this year’s Annual Meeting! GutMonkey’s mission is to provide foundational, life changing experiences for folks with chronic health conditions that improve health outcomes, build communities, dismantle stigma, and increase awareness. Their experienced designers and programmers use best practice experiential education techniques to help people make real change in their lives. With over 16 years working closely with communities affected by chronic medical conditions, they are intentional and knowledgeable. 

GutMonkey is thrilled to be bringing Leading Edge to the bleeding disorder community for the 14th consecutive year since it’s inaugural program in 2007!  Leading Edge is an experiential education program that tackles some of the most pressing challenges in the bleeding disorder community through deeply engaging educational programming, and is the first national program that GutMonkey offered. Leading Edge is a unique and engaging program offered at bleeding disorder organization events. They have provided  230 programs to over 25,000 participants from all 50 states. A multiyear study has found that participants have significantly increased their belief in themselves and their abilities at home, school, and when following a treatment plan.

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. Two consent forms must be completed and returned prior to attending and will be sent to all teens registered. These will be sent once your application is confirmed and can be accessed online below.

Online Gut Monkey Consent

Online Pfizer Media Consent

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VWD for ALL: VWD Wrap – (for our VWD and Rare Community)

Join the VWD Community in South Carolina and beyond and have a brief overview of Von Willebrand Disease, when to seek treatment, how to manage the condition, and learn skills to empower yourself in your treatment care. Discuss what to do when your doctor won’t listen to your needs and learn self-advocacy skills. Open discussions will allow participants to support one another and learn from shared experiences.

Sponsored by HFA, Presented by Sue Geraghty, RN, MBA

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The Missing Gene – (for our young families and the newly diagnosed)

Get your magnifying glass and trench coat out as host Justin Willman attempts to solve the no-family mystery with some help from the community. Meet Michelle and Joey, who are looking for answers as to how a hemophilia A diagnosis came to be in their newborn son, and where they should turn next. In this episode, we dive into the challenges families face without any known history of hemophilia face.

Sponsored by Genentech Presented by Jennifer Harris, RN

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Spotlight on Siblings(for moms and parents)

Learn new tools to help ensure that each child’s needs are met in a family where children have bleeding disorders and others do not.

Sponsored by Sanofi, Presented by Xaviette Kincy – Pointer 

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Mind and Body Skills to Tame and Reframe Pain 7 mind-body approaches

Putting into practice seven simple techniques that harness the power of the mind may help relieve chronic pain. Diane teaches core concepts in Mind-Body Medicine and the Gate Theory of Pain: how to close your brain’s “pain gates” using perception. Diane helps the participants in her sessions discover how deep breathing, mental imagery, meditation, mindfulness, positive self-talk, and self-love can increase pain-blocking body chemistry. Diane believes in the transforming power of meditation, mindfulness, and other mind–body techniques, and is dedicated to helping people access the healing power of their minds to experience more peace, health, and genuine happiness.

Sponsored by CSL Behring, Presented by Diane Dimon, Dr.RS

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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 services.

8-9am: (Premier Sponsors Only), 10-10:45am, 12-1:30pm, 4-5:00pm

2022 HELLO CONFERENCE SPONSORS

 

Thank you to our Premier Sponsor!
Thank you to our Premier Sponsor!
Thank you to our Premier Sponsor!
Thank you to our Premier Sponsor!
Thank you to our Premier Sponsor!
Thank you to our Premier Sponsor!
Thank you to our Premier Sponsor!
Thank you to our Platinum Sponsor!
Thank you to our Platinum Sponsor
Thank you to our Platinum Sponsor!
Thank you to our Platinum Sponsor!
Thank you to our Platinum Sponsor!
Thank you to our Platinum Sponsor!
Thank you to our Platinum Sponsor!
Thank you to our Platinum Sponsor!
Thank you to our Platinum Sponsor!
Thank you to our Platinum Sponsor!
Thank you to our Platinum Sponsor!
National Education and Organizational Support
Thank you to our Educational Sponsor!
Thank you for the Advocacy Support!
Thank you to our Educational Sponsor!
Informational Packet: 

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 11th 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 and Check-out is Saturday by 12:00pm. 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.

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. See the “Super Spectacular HERO Day” Schedule of events for the 2022 Kids Camp Agenda.

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 10th – Friday 6:00 – 8:30 pm: BDASC Annual Meeting, Dinner Presentation & Awards Recognitions will be provided.

June 11th – Saturday 9:00am – 7:00pm: HELLO Conference Education Day Schedule: Morning sessions will begin at 9:00am and run until 12:15pm 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 7:00pm.

***Deadline for Registration: Due to contractual restraints, all completed registrations must be received by Friday, May 19, 2022.   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.

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