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Statewide Annual Meeting & HELLO Conference

HELLO – Helping Embrace Life’s Learning Opportunities

 2021 Annual Meeting and “Virtual” Conference 

June 3, 2021 Pre-Conference

June 11-12, 2021

June 19, 2021

“Together…OUR Journey Continues”

 

WHERE: Your Home, your computer, your phone, your tablet / I-Pad

WHEN: June 3,11,12,19, 2021

Thursday, June 3, 7:00 pm – Pre-Conference Kahoot / Sponsor Preview

  • Learn about treatment therapies and support services, get ready with your technology skills, meet up with friends, and enjoy meeting our exhibitors and sponsors in a pre-conference fun and entertaining “Kahoot Challenge”, complete with prizes! 

REGISTER HERE FOR OUR PRE-CONFERENCE JUNE 3, KAHOOT!

 

Register today below to attend this annual educational community event!

 

Registration Starts Here Today!

Thank you for your interest in attending our Annul Meeting and HELLO Conference. To begin, please first register before June 1, 2021 to receive your “Conference in a Box” package materials! Once you register to attend virtually the annual meeting, please then register for our educational session days below. There is one registration link each for the entire event day on Friday June 11, 12, and 19th. However, you must register for the final night Wine and Design session link, separate from the Saturday zoom link. Food gift cards will be provided during the meeting dinner and lunch hour SPONSOR Exhibit Halls sent to you after your attendance, AND receive raffle tickets with you name listed for all sessions you attend with live drawings of prizes after each session. Additionally, receive double tickets for attending the virtual sponsor exhibit hours each day and then… let the fun begin when your names are entered into our grand prize drawings of an Echo Show 8 Smart Display, 8″ HD Display,  and a set of Apple Air Pods (2nd Generation) Bluetooth Earbuds w/Charging Case. 

We are so excited to see you all at our 2021 Annul Meeting and HELLO Conference! Please contact us with any help in technology you may need- don’t let that stop you from connecting to YOUR community.

Friday, June 11, 5:30 pm – 8:30pm – Opening Night Awards Event

REGISTER HERE FOR FRIDAY, JUNE 11,  NIGHT OPENING EVENT: ANNUAL MEETING

Saturday, June 12,  8:00 am (Coffee hour, sponsor chat, open conversations platform)

Educational Session Day, begins at 9:00am – 5:30pm

REGISTER HERE FOR ALL SATURDAY, JUNE 12, EDUCATIONAL SESSIONS

Saturday, June 19, 9:00am – 3:00pm – Advocacy for All Stages in Life, Teen and Children Programing

REGISTER HERE FOR ALL SATURDAY, JUNE 19, EDUCATIONAL SESSIONS (INCLUDING TEEN AND CHILDREN PROGRAMS)

Saturday, JUNE 19TH – Final Night Event begins at 6:30pm

REGISTER HERE FOR SATURDAY, JUNE 19, FINAL NIGHT COMMUNITY PAINTING EVENT!

 

GENERAL INFORMATION

Informational Flyer 

2021  HELLO Virtual Program 

2021 Quick View Agenda

Learn How To Use ZOOM To Join The HELLO Conference

By Phone Dial In

By Tablet or IPad, Smart Phone

By Laptop or Computer

Our 2021 Virtual Meeting

Due to the ongoing COVID-19 pandemic and for the safety of our members, presenters, and sponsors, we will be providing the 2021 Annual Meeting and HELLO Conference virtually again this year. We plan to return to the Embassy Suites in Greenville in 2022 on June 10-11. Hemophilia of South Carolina’s Annual Meeting has taken place for 47 years and provides the South Carolina bleeding disorders community throughout South Carolina the opportunity to come together and enjoy presentations of the Chapter’s annual awards, scholarships, introducing new board members, and attending educational learning sessions. We learned in 2020 that our online ZOOM platform (forced upon us by COVID-19) helped us reach a broader audience and provided the opportunity to bring those who have not been available to join the annual meeting due to distance, health, or age, the opportunity to gather together with us in unity. We ask you to encourage your family and friends who are affected by bleeding disorders or just want to learn more to register and log in. Please join us and support the Chapter, your community, and our families and friends as we wait until we can all be together again! Registration is required with HSC for the conference materials. Registration information to join the online virtual sessions are available in the links above.

Disclaimers: As with all HSC meetings, your personal information is secured only with the chapter. No personal information gathered or used by HSC during the event will be shared with outside parties or vendors. HSC will endeavor to ensure that all online meetings are safe and secure to the best of our abilities. Chat logs, location data, activity data, video and audio, and other available information within the ZOOM Meeting platforms may be archived to ensure the safety of our participates. We will also control audio and video settings of meetings, sessions, and other communications on our systems for safety, your privacy, and ease of use.  By registering for the virtual session, you agree to our photo and events waiver release. Please review the below link.

Photo and Events Waiver – Release Document   

What Are We Planning?

 

Friday: June 11 – Annual Meeting Opening Schedule

Registration Zoom Link

5:30pm – 6:00pm – Opening Remarks: Sponsors Welcome and Highlights

6:00pm – 7:00pm – Chapter Awards Ceremony

2021 Chapter Awards: 

Presentation of HSC’s Academic Scholarship Awards Program

Inaugural Mark Asbury Eichelberger Scholarship – Lucas Nash

Alba Myers Lewis Scholarship – Elizabeth Snead

HSC Scholarships:

               Logan Cobb, Cedric Jordan, Marques Johnson, Marley Day, Kennedy Brown

Welcome New Board Members:

  • Christine Evans
  • Ursula Sagot
  • James Whitmire

Retiring Board Members:

  • Mike Walden, President
  • Felicia Alexander, Secretary

Chapter Awards Ceremony:

  • Board Member of the Year
  • Appreciation and Partnership Award- Dr. Stephanie Ambrose, Dr. Leslie Gilbert, Dr. Shayla Bergmann
  • Making a Difference Award- Alba Myers Lewis
  • The Fisher Award: Virtual Volunteer of the Year – Edna Rabb
  • Aaron Eugene Gossett Pillar of Strength Award – David Bennett
  • SC Legislative Advocate of the Year – SC Representative, District 20, Adam Morgan
  • HSC Advocacy Coalition Advocate of the Year – Jameelah Malcolm
  • HSC Advocacy Coalition Ambassador of the Year – Sherlene Maloy

7:00pm – Keynote speaker:  Glenn F. Pierce, MD, PhD, Sponsored by the Hemophilia Federation of America

We will be taking a look at the journey of where we are now today in bleeding disorders treatment vs where we have been in our past and hear about Dr. Pierce’s personal journey.  

~ About Glenn Pierce, MD, PhD,

Currently Dr. Pierce serves on the World Federation of Hemophilia (WFH) Vice President Medical and WFH USA Board of Directors and National Hemophilia Foundation (NHF) U.S. Medical and Scientific Advisory Council. He is an Entrepreneur in-residence at Third Rock Ventures as well as a consultant for gene therapy and hematology biotech companies. He co-founded Ambys Medicines in 2018, a cell and gene therapy liver regeneration start-up, and serves as the Chief Medical Officer (CMO). Dr. Pierce retired from Biogen in 2014, where he led the R&D of extended half-life FVIII and FIX Fc fusions as CMO. He spearheaded the donation of 1 billion international units (IUs) and initiation of the humanitarian aid collaboration with WFH. Dr. Pierce also led the initiation of the My Life Our Future (MLOF) program to genotype >10,000 individuals in the US bleeding disorder community. Previously, Dr. Pierce served on the NHF Board of Directors and was President of the NHF. Dr. Pierce received an MD and a PhD in Immunology, and did his postgraduate training in pathology and hematology research. He has 30+ years of experience in biotech drug development in the areas of tissue regeneration and hematology, including hemophilia, beginning with Amgen and has been involved in the development of 5 approved products for hemophilia. He splits time between San Francisco and San Diego. Dr. Pierce was born with severe hemophilia A, and was cured in 2008.

~~Participants will receive a dinner gift card meal for attendance after the meeting~~

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Saturday: June 12 – 8:00am – 5:30pm

Registration Zoom Link

Presentation Sessions:

8:00am – 9:00am – Rise and Shine Morning Coffee: Sponsor Meet and Greet, New Member Experience and Chapter Social Hour

Educational Sessions: 9:00am – 5:30pm

  • 9:00am – 10:00am – Emotional Wellness, Sponsored by Pfizer
    • An overview of how mental health impact the bleeding disorders community, what signs/symptoms to look for, and how to encourage dialogue with caregivers and health care providers.
    • Speaker: Rachael Cooper- Leal
  • 10:30am – 11:30am – Music Therapy, Sponsored by CSL Behring
    • This session will empower participants to reach for music when feeling stressed in life or work rather then harmful substances or digital distractions~
    • Speaker: Tim Ringgold

    ~ About Tim Ringgold, MT – BC ,  Common Factors Professional Speaker

    Throughout Tim’s life, music has been a powerful balm – particularly during times of stress and pain. That’s why Tm loves working in rehab centers in Southern California helping teens and adults learn how to overcome depression, anxiety, trauma, and addiction with the help of music. In addition, he has spent a decade serving as a regional board member of the American Music Therapy Association, is a TED Talk speaker, husband, and father of three wonderful kids: Ali, Bella (who beat us all back to heaven in 2021), and Julian.

11:30pm -1:00pm – Exhibit Hall Open House– Participants will be provided the time and opportunity in breakout rooms to meet with our sponsors as they provide product, treatment therapies, and services updates.   ~Participants will receive a food gift card for their working lunchtime meetings in the exhibit hall~

1:00pm – Live Q and A with Dr. Glenn F. Pierce, MD, PhD

  • 1:30pm – 2:30pm – Gene Therapy Research: Understanding the Science Behind Gene Therapy, Sponsored by BioMarin
    • Gene therapy has been explored as a potential treatment approach for well over 50 years.  This talk will provide a general overview of the following questions:   What causes genetic conditions?  What are the different types of gene therapies being researched? What are gene therapy trials trying to figure out?
    • Speaker: Dr. Guy Young

~About Dr. Guy Young

      Dr. Young is the Director of the Hemostasis and Thrombosis Center and the Clinical Coagulation Laboratory at Children’s Hospital Los Angeles and a Professor of                          Pediatrics at the University  of Southern California’s Keck School of Medicine. His current research activities encompass clinical trials in hemophilia and the development             of the global hemostasis assays to monitor the  effects of medications used to treat bleeding in hemophilia.

  • 3:00 pm – 4:00pm – The Science of Innovation – The Clotting Cascade, Sponsored by Genentech~
    • This session is intended for all rare bleeding disorders. We will review how blood clots:  the different cells and protein clotting factors that are involved in forming a stable blood clot, to include the entire clotting cascade, making this program for anyone with a bleeding disorder.  We will also review the classes of novel therapies that are being studied, such as gene therapy, RNA interference, and therapeutic monoclonal antibodies. An interactive project will be enjoyed by all received in your conference box.
    • Speaker: Virginia Chandler
  • 4:30pm – 5:30pm – von Willebrand Disease: A to Z, Sponsored by Takeda~
    • Join the VWD community and learn together all there is to know about VWD and how to become more connected to the VWD community.
    • Speaker: Betsy Koval

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Saturday: June 19 – 9:00am – 3:00pm

Final Event Day 

“Advocacy for all Stages in Life”

Teen and Tot Programming

Registration Zoom Link

Agenda

  • 9:00am – 10:00am – South Carolina Hemophilia and Bleeding Disorders Advocacy Coalition Programming, Provided by the Advocacy Coalition members
    • Learn about our work and how you can be involved, help us pass our Rare Disease Advisory Council Bill, and share your experiences with the community. Hear from our Legislative Speaker about what we will need to do to move our bill out of the Senate and to the Governor’s desk. Hear what our next steps are and how we need you!!!
    • Learn why it is important to become skillful in advocating for you and your family, and how South Carolina’s Advocacy Coalition is a vital voice for our community.
    • Speakers: Coalition Team Members
  • 10:30am – 11:45am – Teen Program: Improve with Second City, and Advocacy kahoot! Sponsored in partnership with Hemophilia Federation of America
    • Improv for Teens is an interactive virtual session.  In this session, teens will use improvisational comedy skills to build their self-confidence, competence and self-advocacy skills. Participants should leave feeling empowered (and with sore belly muscles from laughing).  Seasoned improv comedians, Katie Klein and Mary Cait Walthall with Second City in Chicago, will facilitate short improv games and utilize their comedic talents to engage teens in this one hour session. We will end with a fun and competitive game of Advocacy Kahoot, complete with prizes. (ages 11-18 years)

12:00pm – 1:30pm – Exhibit Hour Open House

Participants will be provided the time and opportunity in breakout rooms to meet with our sponsors as they provide product & treatment therapies information, and services updates. Participants will receive a food gift card for their working lunchtime meetings in the exhibit hall.

  • 2:00pm – 3:00pm – Children Programming
    • Fun and interactive activities will build friendships and help children connect to the community and learn about bleeding disorders. We will have Show and Tell, Videos, Advocacy Scavenger Hunts, Kids Kahoot and more! (ages 0-10 years)

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Closing Final Night Event & Awarding of Annual Meeting Raffle Drawings

Saturday June 19 – 6:30 – 8:30pm

Registration Zoom Link

 

Virtual Wine and Design Private Family Paint Event:

Our HELLO Conference final night event will be a group virtual “custom ordered just for us” painting art class with Wine and Design! Join your Community Members for this final evening event for a special family painting project of our journeys in life together. You and your family will add your own personal affirmations to the sign post of life.

Be sure to get your registrations in by June 1st for this exciting package to be mailed to you in time!

We will also announce the winners of all our raffle drawings and grand prizes of the annual meeting!

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Virtual Open House Exhibit and Sponsor recognition hours will be spread throughout the 4 day event, providing the time and opportunity in breakout rooms for discussions on product therapies, services,  and community support. Prizes, raffles and food reimbursement gift cards will be provided during the dinner and lunch hour events.

 

Premier Sponsors

                CSLBehring Logo

Genetech LogoTakeda  Bayer


Platinum Sponsors

Accredo LogoSpark LogoNovo Nordisk LogoOctaPharma  

 


National Education and Organizational Support

HFA Logo


2017 Annual Meeting Program Book