About convention

The Annual Sickle Cell Disease Patient & Family Educational Symposiumis the only national sickle cell convention designed, created and hosted by the sickle cell patient and family community. Now in its sixth year, the meeting has grown in size and scope. Each year the meeting is hosted by a partnership of sickle cell community-based organizations, patients and advisors. We are pleased to announce the 2019 symposium will be hosted by the Sickle Cell Association of Texas Marc Thomas Foundation, the As One Foundation, and Carol’s Promise Sickle Cell Association.

Our theme this year is SICKLE SIBLINGS: BONDED BY BLOOD, focusing on our chosen families and the warrior relationships that bring us together. The 2019 agenda places heavy emphasis on becoming Expert Patients, while learning to advocate, educate, and encourage ourselves and each other. Sessions include tracks designed specifically for adults, teens and young adults, children and caregivers, and warrior men. The agenda is designed by the sickle cell community with topics identified by patients, caregivers and healthcare supporters, ranging from “Parenting Issues from Birth to Adult” and “The Science of Sickle Cell” to “Sickle Cell Mental Health” and “Sickle Cell and College Life”.

Fly in, register, relax with us and get to know your fellow Warrior siblings with icebreakers and evening reception. Early risers are invited to join us each morning for Yoga and morning workout sessions. A special morning workout session has been prepared for children and parents.

Registration opens Wednesday, July 24th at 3 PM. We begin festivities at 5 PM with an opening reception and ice-breakers. Early risers are invited to join us each morning at 7 AM for morning yoga and workout. The General Plenary session starts at 10 AM on each day, followed by multi-track breakout sessions, workshops, roundtable discussions and panels. We are excited to offer lunch each day accompanied by a main general session on a wide variety of topics of interest to the sickle cell warrior community. Plenty of free-time is dispersed throughout each day to explore all that Texas has to offer.

We are excited to offer several special evening sessions. Join us on Wednesday night for Warrior Game Night. On Thursday we will host Warriors After Dark Men-Only and Warrior after Dark Women-Only (age 17+/15-16 with parent permission). This session is included in full registration and is divided by gender for adults only. We will discuss a variety of adult-themed topics that are important to our warrior community. Friday afternoon has been left completely open to enable participants to enjoy the sights and tourist destinations of Texas. Then grab your ticket for the Warriors Around the World Awards Gala/Prom on Saturday night.

Join other Warriors as we learn from and encourage each other on all aspects of Warrior life, including dealing with work, school, and relationships. We have special programs for teens, parents, couples, and adults living with sickle cell. Our roundtable panels, plenary sessions, and educational lunches all have been developed for sickle cell warriors and caregivers, by sickle cell warriors and caregivers.

Please feel free to share this website as well as the attached flyer with your community and networks. This program was designed by the sickle cell community for the sickle cell community and is directly focused on supporting warriors and our families in the fight against sickle cell disease

The AS ONE Foundation

http://www.asonefoundation.org/

About Us

The As One Foundation was established in 2007 as a non-profit 501(c)(3) organization to facilitate community programs both individually and in conjunction with similar organizations and to honor the memory of Devaughn Darling, who died prematurely of exertional sickling, a condition that can affect people living with sickle cell trait.

Mission

To educate and increase awareness of sickle cell trait while encouraging youth to achieve their dreams in the face of life’s challenges.

As One Core Values

Vision

To support and enhance youth development by providing youth-centered activities and opportunities to develop character, values, sportsmanship, responsibility and positive relationships through a foundation that is supported and valued both nationally and internationally.

SICKLE CELL ASSOCIATION OF TEXAS

MARC THOMAS FOUNDATION

https://www.sicklecelltx.org/

Pastor Marc Thomas, Founder and CEO of the Sickle Cell Association of Texas Marc Thomas Foundation was born May 17, 1958 in Oakland, California. At the age of 3, Marc was diagnosed with Sickle Cell Disease. It was during Marc’s high school days that he first met Linda and she became his beloved wife. Told by doctors he could never marry or have a family, Marc was truly blessed with three wonderful children; De’drienne, Marc II, and Alysian; he also has a grandson, Jaelen. His family was his inspiration, motivation and his greatest joy.

By profession Marc was a payroll and benefits manager for over 20 years. In 1997 he founded the Sickle Cell Association of Austin – Marc Thomas Chapter and the pastor of Foundation of God Ministries in Austin, Texas. Marc noticed a desperate need in central Texas for advocacy for Sickle Cell patients. Often persons with Sickle Cell Disease in Austin, had no liaison between some doctors and themselves to explain the severity of the disease. Sickle Cell Disease often carried stigmas with which some doctors were ill informed and the level of care for Sickle Cell patients were inadequate. Marc Thomas became that liaison and championed for this underrepresented population even with congestive heart failure, pulmonary hypertension, emphysema and being required to wear oxygen 24 hours per day. He was appointed to the United States Department of Health and Human Services Advisory Board in our Nation’s capital. Marc committed his life to serving God, his family, and others. His beautiful personality, pleasant demeanor, and love for all captured every heart he met.

In recognition and appreciation of his distinguished service, the City of Austin and the State of Texas honored him with a resolution and declared May 17th Marc Thomas Day. This is only a small glimpse of what this great man has accomplished throughout his life for his family, church, businesses, and community. All of his achievements and endeavors are too numerous to possibly list. Marc committed his life to serving God, his family, and the betterment of all mankind.

Though he accomplished a great deal, and truly maximized life, his greatest and proudest accomplishments are his wife of his youth, his three children, and grandson. His wife describes him as loving, devoted, Godly man and father. A man of integrity, and a true gentleman, he embodied all that was good. He passed away at age 46 on May 3, 2005.

Carol’s Promise Sickle Cell Foundation

https://www.carolspromise.org

Carol’s Promise Sickle Cell Foundation was officially founded in 2017 to uphold a promise made by our founder to her mother, Carol to advocate on her behalf for a cure. It has since blossomed into so much more. Carol’s Promise is a community-based organization that is credentialed by the Sickle Cell Community Consortium. Our primary mission is to improve the quality of life for individuals living with Sickle Cell Disease and their families. This is done by support, advocacy, raising awareness and education. We provide resources and services to families in Tarrant County, Texas. Although we are considered a new organization, we have hit the ground running and become an active part of the Sickle Cell community and filling a major void that was present in the Fort Worth, TX and surrounding areas.

Program Overview & Learning Objectives

PROGRAM OVERVIEW:

This is an educational conference planned by and for consumers with sickle cell disease to address issues that are most relevant to consumers. Some of the latest research in sickle cell disease will be discussed as well as management of the most common complications including treatment options; gene therapy, transplant, transfusion, and new therapeutic drugs available (or being researched) for sickle cell disease. Speakers will discuss issues related to stress management, financial management, transition from pediatric to adult care, caregiver respite, rights & responsibilities in the workplace, men only sessions, women-only sessions, and other interesting topics.

TARGET AUDIENCE:

The primary audience is consumers with sickle cell disease, adults and children, their caregivers, and sickle cell advocates.

LEARNING OBJECTIVES:

After completing this course, you should be able to:
Review the most common complications of sickle cell disease
Discuss stress management techniques for sickle cell disease
Discuss chronic transfusion and sickle cell disease

Understand new drug therapies for sickle cell disease!