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                               “KEEPING IT COASTAL”
          Educational Family Camps and Adult retreats
 
              2022 Health Equity Family Advocacy Summit

October 21-23, 2022

FRIDAY: 4:00 PM – Check-in
SUNDAY: 11:00 AM – Check-out
Embassy Suites by Hilton Charleston Airport Hotel & Convention Center
5055 International Blvd, North Charleston, SC 29418
 
Registration closes- September 28th

(There is a limited amount of rooms so don’t wait to register)

This year’s annual recreational and educational family camp is being held in Charleston, SC, and is available to individuals and families who either have a bleeding disorder, are carriers of a bleeding disorder, or have an immediate family member living in the same household diagnosed with a bleeding disorder. The event is going to be centered around addressing South Carolina’s bleeding disorders health equity, inclusion, and diversity (HEDI), all wrapped within a three day summit. With members throughout the state, this summit is being held in the Lowcountry to provide advocacy education and support to our community members who live in the region, while also providing all our advocate members a coastal venue experience.  Members will enjoy an extended opportunity to connect with others who may be experiencing some of the same bleeding disorders health care journeys and challenges, while advocating for solutions to address the barriers we still face as a community. Participants will learn how to best advocate for them self and their families and learn what we can do as a community to help make change. We will be bringing in local and national speakers and educators who are among the best in the nation to help provide session topics. We will concentrate on health equity, inclusion and diversity with members leading the conversations. We will also prepare for our next SC legislative session and address threats with barriers to treatment access. You will leave engaged on how you can make a difference. You and your family will also have time to visit and explore Charleston with all its history and coastal experiences. There will be fun and community connections for the whole family. The agenda and additional information will be coming soon!

Educational exhibit hall opportunities are offered for participants throughout the weekend to provide informational materials and one-on-one conversation opportunities on the most up to date treatment therapies and support services.

The weekend is free of charge to our BDASC members. All meals, lodging, and activities are included. Space is limited and registration with BDASC is required. Notification will be sent once an application is accepted.  Applications are accepted on a first come / first serve basis, and a need-based weighted selection process will be implemented if we cannot accommodate all eligible applications. Come join us, register today, and “Raise Your Shields” in advocacy. Every voice counts!

Meet our Special Guest Speakers!
Michelle Rice, Healthcare Advocate –

Michelle Rice & Associates, LLC

Keri L. Norris, PhD, JM, MPH, MCHES

Vice President of Health Equity, Diversity, and Inclusion, National Hemophilia Foundation

Dr. Keri Norris works as a public health professional with extensive training and expertise in health equity, health promotion and disease prevention at the local, state, and federal level. She has worked for some premiere public health and higher education institutions (including the CDC, The Fulton DeKalb Hospital Authority, Spelman College, Agnes Scott College, Baylor University and Morehouse School of Medicine). She is currently the Vice President of Health Equity, Diversity and Inclusion for the National Hemophilia Foundation.  She has a TEDx Talk on Hiding in Plain Sight: Health Equity and What’s Missing. She is a graduate of Agnes Scott College, Morehouse School of Medicine, the University of South Carolina, and Emory University Law School. Keri serves on the board of  Henry County Board of Health, Good Samaritan Health Center Atlanta, Haven of Light, International and the advisory board of the National Coalition Against Domestic Violence. She is a member of Junior League DeKalb and Alpha Kappa Alpha Sorority, Inc. Dr. Norris is an author, coach, and mentor. In her spare time, she enjoys binge watching a good series, bad karaoke, and spending time with family. She has a son and a grandson.

How your Mental Health affects your Physical Well Being
Debbie de la Riva, LPC

Mental Health First Aid Certified Instructor

Handling the Mental Stress of a Chronic Condition:  Discover how the body holds on to stress, how the physical stress of a chronic condition compounds mental stress, and learn strategies to relieve stress.

Debbie de la Riva received a master’s degree in counseling psychology from the University of Houston and became a licensed professional counselor in 1989. Her work experiences have included serving as a stress management therapist in a psychiatric hospital, managing a mental health resource department and was an Executive Director of an affiliate of Mental Health America.

When her son was born with severe hemophilia in 1994, the entire de la Riva family quickly became involved with the bleeding disorders community on a local and national level.  Debbie is a former Executive Director of the Lone Star Chapter of the National Hemophilia Foundation, past Co-Chair of NHF Annual meeting and a recipient of the Ricky Ray Award for her advocacy efforts. Her son, Jorge, attended hemophilia camp and ultimately became a camp counselor.  Her daughter, Cristina, was elected to be a member of NHF’s National Youth Leadership Institute and her husband, Jorge, served as the chairman of NHF’s Board of Directors.

In addition to founding Mental Health Matters Too, Debbie is a certified Mental Health First Aid Instructor and provides training to hemophilia treatment centers and chapters around the country.

Additional Speaker Presentations Include:

Industry Stakeholders:

  • Alison Clifford, Director, Therapeutic Advocacy and Policy, Takeda

 

National Organizations:

  • Josie Gamez, Government Relations Manager, National Hemophilia Foundation

 

Local Healthcare 

  • Prisma Health Midlands Hemophilia Treatment Center
  • Prisma Health Upstate Hemophilia Treatment Center
  • MUSC Hemophilia Clinic
  • Department of Health and Environment Control
Teen and Children’s Education: (more coming soon)

Teens: 

Learn how to transition your care from your parents and become more independent while managing a bleeding disorders in school, work, or with friends and discover the impact it has on your siblings.

Speaker: Debbie de la Riva

Learn what there is to do in Charleston during our Conference free time! There is something for everyone, discover more here.

                                   With gratitude we thank our 2022 Sponsors!
Thank you to our HEDI Capacity Grant Sponsor
Thank you to our year-round Diamond Advocacy Sponsor
Thank you to our 2022 Premier Family Summit Sponsor
With thanks to our Education 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