6th Annual Sickle Cell Patient & Family Symposium: Full Schedule

3:00pm CDT

Exhibit Space opens!

Wednesday July 24, 2019 3:00pm - 7:00pm CDT
Prairie Foyer

3:00pm CDT

Registration Opens!

Wednesday July 24, 2019 3:00pm - 7:00pm CDT
Prairie Foyer

5:00pm CDT

Chat 'n' Chew Mixer

Welcome to The Warrior Convention! Come join us and meet other family and friends during our Chat 'n' Chew celebration. Sickle Cell Warriors, Inc. one of the original founders of this event, will be hosting tonight! Ice breakers and light refreshments will be provided. Parents of Kid's Track participants- avoid the lines in the morning and register tonight as well!

Presenters

Sickle Cell Warriors, Inc.

Wednesday July 24, 2019 5:00pm - 7:00pm CDT
Prairie Foyer

G: General Sessions, Patient Empowerment

6:00pm CDT

Dance Mob Video- Practice!

Wednesday July 24, 2019 6:00pm - 7:00pm CDT
Prairie B

8:00am CDT

Morning Wellness Activities

Join us for a relaxing warm up to the day's activities. Kristina will guide us in gentle, yet invigorating stretches and other physical activities to get our blood flowing and start the day off right! All ages welcome with parent accompaniment.

Presenters

Kristina Ward

Thursday July 25, 2019 8:00am - 9:00am CDT
Prairie D

G: General Sessions, Self-Care

8:00am CDT

Exhibit Space Opens

Thursday July 25, 2019 8:00am - 7:00pm CDT
Prairie Foyer

8:30am CDT

Getting on Target!

Our focus this year is understanding sickle cell, increasing our self-care and finding our voice! This first session will use art and crafts to help us create a notebook to track all that we will learn this week.

Presenters

Vanessa Rhodes, M.Ed

Director of Outreach and Communication, HOPE for SCD

Vanessa is a mother of a warrior, advocator, and an educator. She is a self proclaimed lover of the educational process as evidenced by the variety of positions she has held over the past 31 years. She served as a teacher, curriculum writer, principal, Educational Administrator... Read More →

Thursday July 25, 2019 8:30am - 9:00am CDT
Blue Stem 1

K: Children's Track, Self-Care

8:30am CDT

Kiddie Keepers- Childcare ages 0-5

Limited Capacity seats available

Something new this year- Kiddie Keepers will be providing childcare and fun activities for children ages 0-5. MUST BE PREREGISTERED THROUGH LISA ROSE. We are not able to accommodate walk ins this year. Thanks!

Presenters

Kiddie Keepers

Kiddie Keepers come to your event to entertain the kids, while adults party in peace. We provide services for weddings, conventions, conferences and more!

Thursday July 25, 2019 8:30am - 1:30pm CDT
Bluestem 2

K: Children's Track, Life Skills

9:00am CDT

The Language of Blood

What is blood made of? How do all the different parts work together? This session focuses on exploring the makeup of blood using hands on lessons and an edible takeaway.

Presenters

Lisa Rose

Instructional Designer, HOPE for SCD

Lisa Rose is the Executive Director for HOPE for SCD, an organization focused solely on providing research based medical education around Sickle Cell Disease and areas of complimentary interest. She has a Master's Degree in Education and has been developing curricula and trainings... Read More →

Thursday July 25, 2019 9:00am - 10:00am CDT
Blue Stem 1

K: Children's Track, disease Ed

9:00am CDT

Registration Opens

Everyone may register during this assigned time. The registration booths (both child and adult) will close at 1:00pm.

Thursday July 25, 2019 9:00am - 1:00pm CDT
Prairie Foyer

G: General Sessions, Patient Empowerment

10:00am CDT

Opening Plenary- Sickle Cell Consortium & Marc Thomas Foundation

Welcome to our 6th Annual Warrior Convention! Please join us as we introduce our focus this year and give an overview of the amazing work happening right here in Texas with our local host The Marc Thomas Foundation.

Presenters

Lakiea Bailey, PhD

Executive Director, Sickle Cell Community Consortium

The Sickle Cell Community Consortium is a US-based non-profit formed in 2014 to “harness and amplify the power of the patient voice”. The Consortium is comprised of sickle cell community-based organizations (CBOs), patient and caregiver advocates, community partners and medical... Read More →

Linda Thomas Wade

CEO and Co-Founder, Marc Thomas Foundation

Linda Thomas Wade is the President, CEO and Co-Founder of the Sickle Cell Association ofTexas Marc Thomas Foundation which started in 1997 by Marc Thomas, her late husband andLinda. Linda is a former United States Health and Human Services (Patient Advocate) Advisoron Blood Safety... Read More →

Thursday July 25, 2019 10:00am - 10:45am CDT
Prairie D

G: General Sessions, Patient Empowerment

10:00am CDT

Sickle What? Part 1

The vocabulary of sickle cell is extremely complicated, especially for our young warriors. However, it doesn’t have to be! Join us as we learn what reticulocytes, tactoid chains, and vaso-occlusive blockages are. Drama, art, and science experiments are all included during this two-part session.

Presenters

Lisa Rose

Instructional Designer, HOPE for SCD

Vanessa Rhodes, M.Ed

Director of Outreach and Communication, HOPE for SCD

Thursday July 25, 2019 10:00am - 11:30am CDT
Blue Stem 1

K: Children's Track, disease Ed

11:00am CDT

FSCDR Update

The Foundation for Sickle Cell Disease Research

Presenters

Dr. Lanetta Bronte-Hall

FSCDR

Lanetta Bronté-Hall, MD, MPH, MSPH is responsible for strategic planning, scientific, and administrative oversight of the Foundation for Sickle Cell Disease Research (FSCDR). She is a leading national and international researcher and population health scientist in the field of... Read More →

Thursday July 25, 2019 11:00am - 11:30am CDT
Prairie D

G: General Sessions, Legislative

11:00am CDT

The Complications of Trait & Importance of Family Planning

Two sickle cell trait positive parents have a 25% chance of birthing a child with sickle cell disease. "Had we known…" is some parents' response to not knowing their sickle cell trait status before becoming parents of a Warrior child or not realizing what their trait status could mean. This session places emphasis on procreation consequence

Moderators

Dr. Tomia Austin

As One Foundation

Tomia Austin, DrPH, a behavioral scientist, health educator and researcher is also the Executive Director of the As One Foundation that was established with a mission to help empower youth to unlock & unleash their full potential through athletics, education and spiritual enrichment. Since... Read More →

Presenters

Suzanne Gordon

SUZANNE GORDON is a mother of 4. Her 2 older children carry the sickle cell trait and her 2 younger children are afflicted with sickle cell disease (Hgb SS). After the birth of her second child, she left her career as a paralegal to raise her children. Suzanne was co-founder of FACE... Read More →

Thursday July 25, 2019 11:00am - 12:00pm CDT
Prairie B

T: Trait Track, Disease Ed

11:00am CDT

Young Adult Reception

Are you 17-21? Join us for a welcoming reception this morning as we go over our track specifics, get to know one another, and here from you on what's important as you transition to adult care, leave home for work and college, and take over the management of your illness as the leader of your care. Sound overwhelming? Don't worry- we are all in this together. Come meet others going through the same life transitions as you.

Presenters

Kenya Buckley

Founder, Carol's Promise Foundation

Kenya Buckley is the Founder and President of Carol’s Promise Sickle Cell Foundation. Carol, her mother, passed away from complications of Sickle Cell Disease in 2005. It has been her mission to tell her mother’s story and the motivation behind her creating Carol’s Promise... Read More →

Thursday July 25, 2019 11:00am - 12:00pm CDT
Prairie C

Y - Young Adult/Teen, Patient Empowerment

11:30am CDT

Intervention to Improve Cognitive Function

Presenters

Dr. Anna Hood

Anna Hood, PhD, is a Sickle Cell Disease Postdoctoral Fellow in the Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children’s Hospital Medical Center. She is the recipient of pre-doctoral (F31) and postdoctoral (F32) training grants from the National Heart... Read More →

Thursday July 25, 2019 11:30am - 12:00pm CDT
Prairie D

G: General Sessions, Disease Ed

11:45am CDT

Sickle What? Part 2

Learn all about the biology of pain as you create blockages using hands on tools. Teams will work together to demonstrate their understanding on sickle cell related blockages using a variety of materials.

Presenters

Lisa Rose

Instructional Designer, HOPE for SCD

Thursday July 25, 2019 11:45am - 1:00pm CDT
Blue Stem 1

K: Children's Track, Disease Ed

12:00pm CDT

Dealing with Grief and Loss

A presentation on the course of moving through the grieving process. Gaining an understanding of the emotions and feelings encountered during the course of grieving and learning how to move through it in a healthy way.

Presenters

Clayton Andrews, LAPC

President, Treatment Team Facilitator, Behavioral Health Counselor, Sickle Cell Champions Association

Clayton Andrews is a 36-year-old patient with Sickle Cell Disease, residing in Augusta GA. An advocate, mentor and father of four, Clayton is an LAPC and graduate from Troy University with a Master of Science in Counseling and Psychology. His primary focus is the enablement and development... Read More →

Thursday July 25, 2019 12:00pm - 12:30pm CDT
Prairie C

G: General Sessions, Mental Health/Self Care

12:00pm CDT

Strategies and Tactics for the Emergency Room

Presenters

Emily O'Shea LCSW, CMM

Emily O’Shea is a licensed clinical social worker based out of the Austin Texas area. She became interested in social justice issues when she started studying at the University of Arizona. She was able to further her education at the University of Texas at Austin and graduated in... Read More →

Thursday July 25, 2019 12:00pm - 12:30pm CDT
Prairie D

G: General Sessions, Patient Empowerment

12:00pm CDT

Holistic Health and Wellness

Presenters

Dr. Tamika Bush

Dr. Tamika Bush, D.O. AKA “Dr. TamikaPeds” is a highly respected and well known Board Certified Pediatrician and "Doctor Mom". Dr. Bush is an international and nationally recognized Speaker, 3x Best-Seller Author and Medical Consultant. She is also an expert on Children’s Health... Read More →

Thursday July 25, 2019 12:00pm - 12:30pm CDT
Prairie B

Y - Young Adult/Teen, Self-Care

12:30pm CDT

Approvals and Denials: Navigating the SSI/SSDI Application

Presenters

Emily O'Shea LCSW, CMM

Thursday July 25, 2019 12:30pm - 1:00pm CDT
Prairie C

G: General Sessions, Patient Empowerment

12:30pm CDT

Success in Texas- Legislative Victory

Presenters

Tonya Prince

Thursday July 25, 2019 12:30pm - 1:00pm CDT
Prairie D

G: General Sessions, Research/Legislation

12:30pm CDT

The Responsibilities of the SC Male

The Sickle Cell Champions Association will direct the Champions Mentoring arc of the M.A.N. Workshop. The Team will educate SC youth and adults through promoting awareness and self-advocacy.

Presenters

Marcus McKinley

I am Marcus McKinley, a 34 year old male entrepreneaur living with, advocating, and conquering sickle cell disease. I am originally from a small Mississippi Delta city of about 40,000 inhabitants named Greenville. Greenville is where I was diagnosed with sickle cell type SS at the... Read More →

Kadeem Gayle

Kadeem Gayle was born in Boston, MA, at an early age Gayle was diagnosed with sickle cell disease.Gayle is a graduate candidate at DREW University, he holds a BA from American International Collegeand an MFA from Adelphi University. He has found writing to be a positive outlet especially... Read More →

Thursday July 25, 2019 12:30pm - 1:30pm CDT
Prairie B

M: Men Track, self-Care

1:00pm CDT

We are Sickle Cell Patient Ambassador

Presenters

Dr. Terry

Thursday July 25, 2019 1:00pm - 1:15pm CDT
Prairie D

G: General Sessions, patient Empowerment

1:00pm CDT

Self-Care Wrap Up

Each day will end with this vital piece of mental health. Participants will reflect on the learning of the day and record memories of the events using photography, art, and writing.

Presenters

Vanessa Rhodes, M.Ed

Director of Outreach and Communication, HOPE for SCD

Thursday July 25, 2019 1:00pm - 1:30pm CDT
Blue Stem 1

K: Children's Track, Mental Health/Self Care

1:30pm CDT

The Complexity of Sickle Cell Disease: Why are Hemolysis and Anemia so Important?

Understand why hemolysis is important in sickle cell disease and how it affects individuals with sickle cell.

Presenters

Dr. Kenneth Bridges

Vice President, Medical Affairs, Global Blood Therapeutics

Dr. Kenneth R. Bridges received the MD degree from Harvard Medical School, and subsequently trained in internal medicine and hematology in Boston, at Massachusetts General and Brigham and Women’s Hospitals, respectively. Following medical subspecialty training, Dr. Bridges worked... Read More →

Dr. James Eckman

Professor Emeritus Hematology and Medical Oncology, Winship Cancer Institute Emory University School of Medicine

Dr. Eckman practiced academic medicine for more than 41 years establishing the Georgia Comprehensive Sickle Cell Center, the world’s first 24-hour, comprehensive acute care sickle cell program, which presently serves a patient population of more than 1,000 active patients from a... Read More →

Sponsors

Global Blood Therapeutics

GBT is a clinical-stage biopharmaceutical company determined to discover, develop and deliver innovative treatments that provide hope to underserved patient communities. GBT is developing its late-stage product candidate, voxelotor (previously called GBT440), for the treatment of... Read More →

Thursday July 25, 2019 1:30pm - 2:30pm CDT
Prairie D

G: General Sessions, Research/Legislation

2:30pm CDT

ASH Research collaborative updates

Presenters

Chuck Chesson

American Society of Hematology (ASH)

LaTasha Lee

American Society of Hematology (ASH)

Thursday July 25, 2019 2:30pm - 3:00pm CDT
Prairie D

G: General Sessions, Research/Legislation

3:00pm CDT

Creating a Mindset of Wealth: Fulfilling the Mandate of Prosperity

Embracing a Mindset for Wealth Building
Dr. Gayle Rogers, Forever Free, Inc.
Author of Healing the Traumatized Soul and
The Whole Soul

This session is designed to explore avenues of creating wealth in an effort to place greater emphasis of the significance of more research in the field of Sickle Cell Disease.
The objectives are to:
vFacilitate discussion of awareness of your earthly identity!
vExplore our DNA’s distinction in our earthly positioning concerning creating wealth
vRaise the consciousness level of our DNA authority regarding stewarding the earth’s resources
vLearning the meaning of becoming a wealth creator in a season of transference of wealth by introducing wealth building principles
vUnderstand increasing financial literacy and education
vSquashing the spirit of a poverty mindset
vCreating a vehicle to multiply your money

Presenters

Dr. Gayle Rogers

Dr. Gayle Rogers is founder and president of Forever Free, Inc., & A.C.E. Network, a coaching for empowerment group located in Dana Point. California. In the ministry arena, her primary focus is equipping, coaching and training leaders to facilitate wholeness and healing, while carrying... Read More →

Thursday July 25, 2019 3:00pm - 4:00pm CDT
Prairie B

G: General Sessions, Mental Health/Self Care

3:00pm CDT

Focus Group #1

Thursday July 25, 2019 3:00pm - 4:00pm CDT
Prairie D

G: General Sessions, Patient Empowerment

3:45pm CDT

An Introduction to Personal Finances: A Warrior University Series - Philip Okwo

Presenters

Philip Owko

Thursday July 25, 2019 3:45pm - 4:15pm CDT
Prairie C

4:30pm CDT

Dance Rehearsal- Dance Mob Video

Presenters

Kristina Ward

Thursday July 25, 2019 4:30pm - 5:30pm CDT
Prairie D

G: General Sessions, Patient Empowerment

6:00pm CDT

Rock the Block! The Great Texan BBQ

Join us for some authentic Texan Barbecue tonight, courtesy of Novartis! We will also have a DJ in attendance so plan on wearing your dancing shoes as well! All ages are welcome to this no cost event.

Sponsors

Novartis

At Novartis, we invest in the most promising frontiers of science, the most exciting innovations in the business of medicine, and the most significant healthcare needs.

Thursday July 25, 2019 6:00pm - 8:00pm CDT
Prairie Foyer

G: General Sessions

8:00am CDT

Morning Wellness Activities

Presenters

Kristina Ward

Friday July 26, 2019 8:00am - 9:00am CDT
Prairie D

G: General Sessions, Self-Care

8:00am CDT

Exhibit Space Opens

Friday July 26, 2019 8:00am - 7:00pm CDT
Prairie Foyer

8:30am CDT

Parent to Parent Panel

Presenters

Lisa Rose

Instructional Designer, HOPE for SCD

Janet Ola

Friday July 26, 2019 8:30am - 9:30am CDT
Prairie C

C: Caregiver, Patient Empowerment

8:30am CDT

Warrior Parents- A panel on loving as a warrior and raising well adjusted children

Join us as we here from sickle cell warriors that are ALSO parents. They will share their personal testimonies as well as field questions from the audience around this ever-growing topic among our community.

Presenters

Clayton Andrews, LAPC

President, Treatment Team Facilitator, Behavioral Health Counselor, Sickle Cell Champions Association

Shamonica Wiggins

Shamonica Wiggins is a 30-year-old sickle cell warrior and a native of Dallas, TX. Although she has sickle cell SS, which is commonly referred to as the most critical form of the illness, she rarely allows it to get in the way of her chasing her dreams. This is evident in the work... Read More →

Friday July 26, 2019 8:30am - 9:30am CDT
Prairie B

C: Caregiver, Mental Health/Self Care

8:30am CDT

Body Systems

How do our bodies work exactly? How are all the systems connected? This session will focus on the completion of an organ system chart to explore these connections and how they are all affected by sickle cell.

Presenters

Vanessa Rhodes, M.Ed

Director of Outreach and Communication, HOPE for SCD

Friday July 26, 2019 8:30am - 9:30am CDT
Blue Stem 1

K: Children's Track, Disease Ed

8:30am CDT

Kiddie Keepers- Childcare ages 0-5

Presenters

Kiddie Keepers

Kiddie Keepers come to your event to entertain the kids, while adults party in peace. We provide services for weddings, conventions, conferences and more!

Friday July 26, 2019 8:30am - 1:30pm CDT
Blue Stem 3

K: Children's Track, Life Skills

9:00am CDT

Registration Opens

Everyone may register during this assigned time. The registration booths (both child and adult) will close at 11:00am.

Friday July 26, 2019 9:00am - 11:00am CDT
Prairie Foyer

G: General Sessions, Patient Empowerment

9:30am CDT

QSource- Photo Project

Presenters

Frances Richardson

As the Qsource project lead for a Centers for Medicare & Medicaid Services (CMS) initiative to improve health care for adults with Sickle Cell Disease (SCD), Frances Richardson works closely with providers, health plan navigators, and patients and families to increase education... Read More →

Friday July 26, 2019 9:30am - 10:00am CDT
Prairie D

G: General Sessions, Patient Empowerment

9:30am CDT

Germs and Infection Control

Why are germs such a hot topic in the sickle cell world? How exactly are they spread and what can we do to prevent this? This session covers multiple levels of germ education, including a competition between the older and younger participants to see who truly puts germ care at the forefront of their everyday life.

Presenters

Vanessa Rhodes, M.Ed

Director of Outreach and Communication, HOPE for SCD

Friday July 26, 2019 9:30am - 10:30am CDT
Blue Stem 1

K: Children's Track, Disease Ed

10:00am CDT

Plenary: Beverly Francis-Gibson, SCDAA

Am I my brothers or sisters keeper?

Presenters

Beverley Francis-Gibson

SCDAA

Beverley Francis-Gibsonis President/CEO of the Sickle Cell Disease Association of America, Inc. (SCDAA)Francis-Gibson previously served as the Executive Director of the National Alliance on Mental Illness (NAMI HC) of Howard County in Columbia, Maryland and has more than 25 years... Read More →

Friday July 26, 2019 10:00am - 10:45am CDT
Prairie D

G: General Sessions, Patient Empowerment

10:30am CDT

My Health Passport

Join us as we identify medications, common medical personnel, and overall care related to sickle cell. Each participant will also create a personalized Health passport for use during both outpatient and inpatient situations. For those that do not live with sickle cell, we will focus on creating healthy habits and raising self awareness around overall health.

Presenters

Vanessa Rhodes, M.Ed

Director of Outreach and Communication, HOPE for SCD

Lisa Rose

Instructional Designer, HOPE for SCD

Friday July 26, 2019 10:30am - 11:00am CDT
Blue Stem 1

K: Children's Track, patient Empowerment

10:45am CDT

The Live Big Project

Friday July 26, 2019 10:45am - 11:00am CDT
Prairie D

11:00am CDT

Reproductive Health and SCD

Join us as we discuss reproductive health and living with Sickle Cell. What does that look like for both men and women? How do medications, treatments, etc. affect our health?

Presenters

Dr. Alicia Nero

Friday July 26, 2019 11:00am - 11:30am CDT
Prairie D

G: General Sessions, Disease Ed

11:00am CDT

How Athletes Feel About SCT - In Their Own Words.

Presenters

Dr. Tomia Austin

As One Foundation

Friday July 26, 2019 11:00am - 11:30am CDT
Prairie B

T: Trait Track, patient Empowerment

11:00am CDT

Clarity of Mind: Depression, Anxiety & PTSD

This session is designed to help the Sickle Cell Warrior understand mental health issues as they relate to SCD. The objectives are to:
vStart the conversation on mental health issues associated with SCD
vWhat is mental health and mental health awareness
vDescribe symptoms of specific mental health issues
vDiscuss symptoms and triggers of mental illness
vFacilitate the discussion on Depression, Stress & Anxiety, PTSD and Suicidal Ideation
vFacilitate discussion on stigma reducing strategies & the development of patient-oriented interventions to prevent and treat mental health-related stigma

Presenters

Dr. Gayle Rogers

Friday July 26, 2019 11:00am - 12:00pm CDT
Prairie C

G: General Sessions, Mental Health/Self Care

11:00am CDT

Broken Crayons Still Color

Broken Crayons Still Color- Self Advocacy & Mental Health AwarenessAdvocacy of any kind is challenging. Not only are a number of skills necessary to advocate effectively, but you must also believe that your voice is valued. By practicing self-advocacy with the support of parents and trusted adults, teens can gain confidence in using this important life skill and parents get to see teens take a first step toward living an independent, successful life.

Presenters

Duchess Joyce El

Founder/CEO, Journeys by Grace Global Missions, Inc

Self Advocacy Training/WorkshopsMedical Humanitarian Missions (worldwide)Yellow Rose Mentoring Group (girls)Expressive Art Therapy (Film, Crafts, and Writing)

Friday July 26, 2019 11:00am - 1:00pm CDT
Blue Stem 1

K: Children's Track, Self-Care

11:30am CDT

Cure Sickle Cell Intiative

Learn more about what the Cure Sickle Cell Initiative is and how you can help as a warrior or caregiver.

Presenters

T. Mondoro

Friday July 26, 2019 11:30am - 12:00pm CDT
Prairie D

G: General Sessions, Research/Legislation

11:30am CDT

Let's Talk about Trait: Research, Screening, Prevention, Pain, Ethnicity, Mental Health

There's so much that's not covered in the 5 minutes dedicated to sickle cell trait in a medical school curriculum. This session focuses on risks and protective factors associated with sickle cell trait primarily in sports and the military.

Presenters

Dr. Stephen Boateng, Pharm.D, RPH

Sickle Cell 101

Dr. Stephen Boateng is a passionate advocate and spokesperson for sickle cell disease and sickle cell trait. As a pharmacist by training, his passion in healthcare stems from his sister living with sickle cell disease and him being a sickle cell trait carrier. Dr. Boateng’s current... Read More →

Dr. Tomia Austin

As One Foundation

Farron Dozier

SFC, Retired, US Army, Executive Director and Content Producer:Since the age of 5 I had pain in my left arm which doctors related it to growing pains. I found I had Sickle Cell Trait after 10 years in the Army in 1999. In 2006 after collapsing at the Master Sgt Academy completing... Read More →

Friday July 26, 2019 11:30am - 12:15pm CDT
Prairie B

T: Trait Track, disease Ed

12:00pm CDT

From Menstrual Cycles to Menopause: Health Concerns for the Warrior Woman

This session is a romp through the major events over girls and women's reproductive lifespan. We will review what we know (and what we don't!) about puberty and sexual development in girls and women with sickle cell disease. Topics will include what we understand about normal development, pain and painful periods, contraception considerations, pregnancy planning and pregnancy management for girls and women living with sickle cell disease.

Presenters

Dr. Lydia Pecker

Director of the young Adult Clinic- Sickle Cell Center for Adults, John Hopkins

Lydia H. Pecker is the Director of the Young Adult Clinic at the Sickle Cell Center for Adults at Johns Hopkins in Baltimore, Maryland. Dr. Pecker is a Brooklyn native, and trained in the Bronx and Washington D.C. before settling in Baltimore. Dr. Pecker is supported by awards from... Read More →

Friday July 26, 2019 12:00pm - 12:30pm CDT
Prairie C

G: General Sessions, disease Ed

12:00pm CDT

Speaking the Language: Communication in the E.D. Q-Source Quality Improvement

Presenters

Dominique Friend

Friday July 26, 2019 12:00pm - 12:30pm CDT
Prairie D

G: General Sessions, Patient Empowerment

12:15pm CDT

SCCA Presents- Sickle cell and men’s health: priapism and other concerns

Presenters

Dr. James Eckman

Professor Emeritus Hematology and Medical Oncology, Winship Cancer Institute Emory University School of Medicine

Demetrious Wyant

Philip Owko

Friday July 26, 2019 12:15pm - 1:00pm CDT
Prairie B

M: Men Track, disease Ed

12:30pm CDT

Pulmonary Complications in SCD

At this session, Dr. Klings will discuss the different pulmonary issues that can impact the lives of adults living with sickle cell disease. She will discuss how you can recognize when your lungs may be a problem. An overview of how to approach diagnosing lung disease and treating it in sickle cell disease will be presented.

Presenters

Dr. Elizabeth Kings

Associate Professor of Medicine and the Director, Center for Excellence in Sickle Cell Disease, Boston Medical Center

Dr. Elizabeth Klings is an Associate Professor of Medicine and the Director of the Center for Excellence in Sickle Cell Disease, which cares for over 500 adult and pediatric patients, at Boston University School of Medicine/Boston Medical Center. She received her BA and MD degrees... Read More →

Friday July 26, 2019 12:30pm - 1:00pm CDT
Prairie D

G: General Sessions, disease Ed

12:30pm CDT

Spiritual and Emotional Well-being

Coping with the physical, mental and emotional consequences of Sickle Cell Disease places a heavy toll on the Warrior. Reverend Sheryl Armstrong will share her knowledge on the importance of the Warriors well-being on a spiritual and emotional level.

Presenters

Rev. Sheryl Armstrong, BA, MS, MDiv, CNPC

Pastoral Counselor/Therapist

Presently, Reverend Armstrong is a Chaplain for Georgia Regional Hospital in Savannah Georgia. She is also founder of New Life Pastoral Care Counseling Services in Warner Robins, GA. She received her seminary training from The Interdenominational Theological Center in Atlanta Georgia.Rev... Read More →

Friday July 26, 2019 12:30pm - 1:00pm CDT
Prairie C

G: General Sessions, self-Care

1:00pm CDT

Self Care Wrap Up Part 2

Presenters

Vanessa Rhodes, M.Ed

Director of Outreach and Communication, HOPE for SCD

Friday July 26, 2019 1:00pm - 1:30pm CDT
Blue Stem 1

K: Children's Track, Mental Health/Self Care

1:30pm CDT

Crispr-Vertex

Join us as we hear more about gene editing in the trials that are moving forward thanks to Crispr via Vertex Pharmaceuticals.

Sponsors

Vertex Pharmaceuticals

Friday July 26, 2019 1:30pm - 2:30pm CDT
Prairie D

G: General Sessions, Research/Legislation

3:00pm CDT

Developing a Wellness Plan

The SCMHI Team will implement a wellness workshop for the Warrior. The goal of this workshop is to instill the Warrior with a workable plan to better implement a wellness guideline to better support their mental, physical and emotional health.

Presenters

Rev. Sheryl Armstrong, BA, MS, MDiv, CNPC

Pastoral Counselor/Therapist

Clayton Andrews, LAPC

President, Treatment Team Facilitator, Behavioral Health Counselor, Sickle Cell Champions Association

Jewel Darbone

Jew-EL Darbone is a 30yr old sickle cell warrior dedicated to sickle cell advocacy and empowerment. She is one of the founders and CEO of 501c3 Nonprofit organization #Boldlipsforsicklecell. #Boldlipsforsicklecell started as a social media awareness challenge for sickle cell disease... Read More →

Friday July 26, 2019 3:00pm - 4:00pm CDT
Prairie C

G: General Sessions, Life Skills

3:00pm CDT

Focus Group: Improving ED Care - Speaking the Language

Moderators

Tamara Wilson

Friday July 26, 2019 3:00pm - 4:00pm CDT
Prairie D

G: General Sessions, Patient Empowerment

3:00pm CDT

Navigating College and Beyond

Join us as we discuss navigating college and what comes after graduation while living well with sickle cell. Our expert panelists are successfully accomplishing their dreams and will share insight into how they have been able to continue to move towards their educational and professional goals.

Presenters

Nia Sumpter Thomas

graduated from Saint Louis University with a Bachelors of Arts in African American Studies and a minor in Medical Humanities. As a student, I served on the Student Government Association as the Senator for the College of Arts and Sciences. Before graduation, I was offered the distinguished... Read More →

Reggie Robinson

Andre Harris

André Marcel Harris is a Bachelor of Social Work (BSW) student and a Ronald E. McNair Scholar at Fayetteville State University in Fayetteville, North Carolina. Upon completion of his BSW, Mr. Harris aspires to pursue a Master of Social Work/Master of Public Health (MSW/MPH) and a... Read More →

Ade Adeyokunnu

Ade Adeyokunnu was born in Nigeria, but grew up in the Washington, D.C. area, in Maryland. I am a former technology consultant and I currently live in Austin, Texas, where I just graduated with my MBA from the University of Texas in order to pivot into a strategy role in healthcare... Read More →

Sherika Princess

My name is Sherika Princess and I am supercalifragilisticexpialidocious. I was born and raised in Houston, Texas. I came to the DFW area to continue my education at Texas Woman's University. Initially I came to pursue an education and Health Studies and Health Informatics it hopes... Read More →

Brittany Clerkley

Friday July 26, 2019 3:00pm - 4:00pm CDT
Prairie B

Y - Young Adult/Teen, patient Empowerment

4:00pm CDT

Dance Mob Video- Practice!

Friday July 26, 2019 4:00pm - 5:00pm CDT
Prairie B

5:00pm CDT

Service Project- Kids and Adults!

Moderators

Sharonda Sikes

Friday July 26, 2019 5:00pm - 6:00pm CDT
Blue Stem 1

G: General Sessions, Patient Empowerment

6:00pm CDT

Paint and Sip

Friday July 26, 2019 6:00pm - 9:00pm CDT
Bluestem 2

G: General Sessions, Patient Empowerment

6:00pm CDT

Kids Night Out

Kids up to age 15 can come out for a fun filled time of dinner, games, crafts and a movie. Registration required. See Lisa Rose or email lrose@hopeforscd.org to register. $10/child, $30/per family cap. Includes dinner, snack and goodie bag.

Friday July 26, 2019 6:00pm - 10:00pm CDT
Prairie B

C: Caregiver, Self-Care

7:00pm CDT

Warriors After Dark: Warrior Men

An after-hours meeting of the SC male mind. Presented by SCCA.

Presenters

Clayton Andrews, LAPC

President, Treatment Team Facilitator, Behavioral Health Counselor, Sickle Cell Champions Association

Friday July 26, 2019 7:00pm - 9:00pm CDT
Blue Stem 3

M: Men Track, patient Empowerment

7:00pm CDT

Warriors After Dark- Women, Empowerment Sessikn

Women Only- Safe space for female warriors to do discuss topics of their choice with a qualified moderator.

Presenters

Maxine Collard

Friday July 26, 2019 7:00pm - 9:00pm CDT
Prairie C

W- Women Only, Mental Health/Self Care

9:00pm CDT

Insomniac's Café- Karaoke

Friday July 26, 2019 9:00pm - 10:00pm CDT
Prairie D

G: General Sessions, Patient Empowerment

8:00am CDT

Morning Wellness Activities

Presenters

Kristina Ward

Saturday July 27, 2019 8:00am - 9:00am CDT
Prairie D

G: General Sessions, Self-Care

8:30am CDT

Natural Approaches to Pain Management

How can you combat pain either without or in conjunction with pain medications? How can your self-care choices help you to reduce the frequency of your pain? This hands on session will explore two terrific options- the use of relaxation and diet. Participants will make a takeaway stress ball and sample foods that increase blood production.

Presenters

Lisa Rose

Instructional Designer, HOPE for SCD

Vanessa Rhodes, M.Ed

Director of Outreach and Communication, HOPE for SCD

Saturday July 27, 2019 8:30am - 10:15am CDT
Blue Stem 1

K: Children's Track, Self-Care

8:30am CDT

Kiddie Keepers- Childcare ages 0-5

Presenters

Kiddie Keepers

Kiddie Keepers come to your event to entertain the kids, while adults party in peace. We provide services for weddings, conventions, conferences and more!

Saturday July 27, 2019 8:30am - 1:30pm CDT
Bluestem 2

K: Children's Track, Life Skills

9:00am CDT

Caring for the Caregiver: Dealing with Burnout & Guilt

Limited Capacity seats available

Presenters

Carley Elle Cole Cavins

Owner, Cleverly Changing

Residing in PG County Maryland with her husband and twin daughters. Elle Cole left her corporate job to become a stay-at-home mom when her daughters were only 4 months old. She holds a B.A. degree in English and History. She is a writer and content creator who is a go-to resource... Read More →

Saturday July 27, 2019 9:00am - 10:00am CDT
Prairie C

C: Caregiver, Mental Health/Self Care

9:00am CDT

The Mental Health Panel

Presenters

Dominique Goodson

Dominique Goodson was born and raised in Newark, NJ. After graduating from Rutgers University with a degree in Sociology and Anthropology, Dominique began working as research assistant to professors at different universities. During one of her breaks between research projects, she... Read More →

Heather Avant

Heather is a natural light photographer, painter, crafter, sickle cell warrior, sickle cell advocate, and all around do-it-yourselfer thriving in Dallas, Texas with her husband Jason and son Jett. She was born and raised in Ypsilanti/Ann Arbor, Michigan where she went on... Read More →

Clayton Andrews, LAPC

President, Treatment Team Facilitator, Behavioral Health Counselor, Sickle Cell Champions Association

Jewel Darbone

Shamonica Wiggins

Saturday July 27, 2019 9:00am - 10:00am CDT
Prairie D

G: General Sessions, self-Care

10:00am CDT

Opening Plenary Session: ADM Brett Giroir, U.S. Asst. Secretary of Health

Presenters

ADM Brett P. Giroir, M.D,

Assistant Secretary of Health, U.S.Departmemt of Health and Human Services

Assistant Secretary for Health (ASH)HHS Office of the SecretaryADM Brett P. Giroir, M.D., was sworn in as Assistant Secretary for Health at the U.S. Department of Health and Human Services (HHS) on February 15, 2018. The Assistant Secretary for Health leads development of HHS-wide... Read More →

Saturday July 27, 2019 10:00am - 10:45am CDT
Prairie D

G: General Sessions, Research/Legislation

10:30am CDT

SC3 Kids Quarterly Meeting

Presenters

Sophia Rose

Program Manager, SC3 Kids Initiative

Sophia Rose is a rockstar 10 year old artist and speaker who just happens to also have Sickle Cell. She comes from a super fun family of 9 kiddos and she loves snuggling with her mom, who also happens to be her teacher. Sophia is the current program manager for the SC3 Kids Initiative... Read More →

Saturday July 27, 2019 10:30am - 12:15pm CDT
Blue Stem 1

K: Children's Track, patient Empowerment

11:00am CDT

504/IEP Accomodations

Sickle cell automatically qualifies for a 504 plan and sometimes you can even get accommodations through an IEP. Come join us for elementary, secondary, and higher education accommodations that can help you be successful during your educational journey.

Presenters

Tynisha Hall

Tynisha Hall 30 years old born and raised in Birmingham, Alabama and resides in Atlanta, Ga. Tynisha is a graduate and proud alumnus of Delaware State University with a Bachelors degree in Broadcast Journalism. She serves as the communications/community outreach director... Read More →

Saturday July 27, 2019 11:00am - 11:30am CDT
Prairie C

Y - Young Adult/Teen, Patient Empowerment | C: Caregiver, Patient Empowerment

11:00am CDT

The Truth about Sickle Cell Trait & Cancer

Sickle cell trait is characterized as a benign condition. It is also an unfortunate truth that it is classified as the top non-injury killer of collegiate athletes. Yet, there is also a rare but grave association with kidney cancer. Hear personal accounts from parents of #TraitWarriors gone too soon.

Moderators

Dr. Tomia Austin

As One Foundation

Presenters

Bridgette Lloyd

Ritchie Johnson, MBA, BSN, RN

Ritchie Johnson is a Mother, Registered Nurse, Author, Speaker and Advocate. She is the Founder and President of the Chris “CJ” Johnson Foundation, Inc., a 501(c) 3 non-profit charity organization located in Sugar Land, Texas. She holds a BSN from Texas Woman’s University in... Read More →

Saturday July 27, 2019 11:00am - 12:00pm CDT
Prairie B

T: Trait Track, disease Ed

11:40am CDT

Sickle Cell 101

Want a better basic understanding of sickle cell disease in a small group setting open to lots of questions? This is the session for you!

Presenters

Dr Wanda Whitney-Shirney

Saturday July 27, 2019 11:40am - 12:25pm CDT
Prairie D

G: General Sessions, Disease Ed

12:00pm CDT

Traveling with Sickle Cell

Come and learn about traveling with sickle cell and best practices for a successful trip.

Presenters

Mattie Robinson

MicroMattie Consulting

BiographyMattie Robinson, MS MA has earned graduate degrees from Johns Hopkins University and the University of Florida. Ms. Robinson has over 7 years of biomedical research experience spanning the fields of Human Genetics and Molecular Biology, Microbiology, and Chemistry. She... Read More →

Saturday July 27, 2019 12:00pm - 12:30pm CDT
Prairie C

G: General Sessions, self-Care

12:30pm CDT

What you need to know about Hydroxyurea

Learn about the basics of HU and how it affects our bodies as an effective treatment option for many living with sickle cell.

Presenters

Dr. Isaac Odame

Saturday July 27, 2019 12:30pm - 12:55pm CDT
Prairie D

G: General Sessions, disease Ed

12:30pm CDT

Relationships in the SCD Male Population

Focusing on helping the Sickle Cell Male find balance in life's explorations. A workshop and sharing of wisdom in an effort to help the Sickle Cell Male strategize fulfillment and support in the Sickle Cell Male's Life.

Presenters

Ulysse Guerrier

Ulysse is the Coordinator of the Sickle Cell Program out of TAIBU Community Health Centre where he runs a support group for adults living with the disease. He began the Sickle Cell Program in 2011 as a research project to gather data and to show the many needs of individuals... Read More →

Saturday July 27, 2019 12:30pm - 1:00pm CDT
Prairie B

M: Men Track, patient Empowerment

12:30pm CDT

The Importance of Self-Care

Presenters

Shamonica Wiggins

Saturday July 27, 2019 12:30pm - 1:00pm CDT
Prairie C

Y - Young Adult/Teen, self-Care

12:30pm CDT

Creative Movement

Join us for a fun afternoon dance class for kids! Learn how to focus your attention away from the pain and explore the benefits of this terrific therapeutic opportunity.

Presenters

Kristina Ward

Saturday July 27, 2019 12:30pm - 1:30pm CDT
Blue Stem 1

K: Children's Track, Self-Care

1:00pm CDT

Knowing Your Limits

Presenters

Tosin Ola

Founder, CEO, Sickle Cell Warriors, Inc.

Tosin Ola, RN, BSNFounder & President, Sickle Cell Warriors, Inc. Tosin Ola, BSN, RNknows firsthand the challenges of living with sickle cell disease. Thepracticing registered nurse and mother of twin toddlers, launched the SickleCell Blog in 2005 to bond with others and share her... Read More →

Saturday July 27, 2019 1:00pm - 1:25pm CDT
Prairie B

G: General Sessions

1:00pm CDT

Port Care

Many Warriors either have ports or are interested in learning more about them. Come to the session so you can learn the basics of the different types of ports, what they’re used for, how to properly care for them and practical tips on ways to avoid infection.

Presenters

Ritchie Johnson, MBA, BSN, RN

Saturday July 27, 2019 1:00pm - 1:25pm CDT
Prairie C

G: General Sessions

1:00pm CDT

Clinical Trials

How does a drug make it to market? What are the different phases of a clinical trial? How can we as patients and caregivers participate in the future of drug development? Come and learn about this important topic as we work towards finding new treatments and ultimately a cure!

Presenters

Dr. Stephen Boateng, Pharm.D, RPH

Sickle Cell 101

Saturday July 27, 2019 1:00pm - 1:30pm CDT
Prairie D

G: General Sessions, Legislative

1:30pm CDT

STEM Corner - Technology Workshop & Lab

Join us for a fun afternoon coding and robotics class for kids! Learn how to focus your attention away from the pain and explore the benefits of this terrific therapeutic opportunity.

Presenters

Corey Ward

Saturday July 27, 2019 1:30pm - 3:30pm CDT
Prairie A

K: Children's Track, Self-Care

1:30pm CDT

The Jazmine Rivera Beauty Within Sickle Cell Glam Squad

In honor of our warrior Jasmine Rivera, come and get your hair and make up done by a professional barber’s, hairstylist, and a make up artist, during this time. You must sign up for a time slot and suggested donations are as follows: hair $10 for adults, five dollars for children. Make up ( must bring your own foundation ) $15.

Saturday July 27, 2019 1:30pm - 5:00pm CDT
Blue Stem 1

G: General Sessions, Self-Care

2:00pm CDT

Community Spotlight Presentations

COMMUNITY SPOTLIGHT PRESENTATION
Kadeem Gayle: Anthology
The India Initiative: Sickle Cell Warriors, Inc.
Sickle Life Adolescent Mentorship Project: Advocating for Senate Bill 600: Archival Research on Sickle Cell Disease Genesis: Be The Match

Saturday July 27, 2019 2:00pm - 3:00pm CDT
Prairie D

G: General Sessions, Research/Legislation

7:00pm CDT

Prom

Keynote Speaker- Devard Darling
Devard Darling is a retired NFL veteran wide receiver and represents the 18% of professional athletes living with sickle cell trait. A native of Nassau, Bahamas, Darling was selected as the 82nd pick in the third round of the 2004 NFL draft making him one of the first Bahamian athletes to get drafted to the National Football League. Devard accomplished another boyhood dream shared by he and his late identical twin Devaughn Darling when the As One Foundation was founded in 2007. The As One mission is to educate and increase awareness of sickle cell trait while encouraging youth to achieve their dreams in the face of life’s challenges. As the spokesperson for the foundation, Darling is devoted to ensuring his brother's death was not in vain by sharing the importance of awareness of sickle cell trait. As a #TraitWarrior - a sickle cell trait carrier and an identical genetic match to his late brother, Darling is living proof that exertional sickling is preventable and should NEVER result in death.

Darling is an entrepreneur beginning his first business experience in 2010, while still an active player in the NFL, when he started Express Pick Up and Delivery Transportation Services. As a contracted carrier of FedEx, Express P&D takes pride in delivering the "Purple Promise" and revels in the opportunity to keep its customers happy! Currently Express P&D has 10 employees and 12 trucks in its fleet. In 2012 Devard officially retired and teamed up Altruvista Wealth, a wealth management firm in Houston Texas, to develop a specific financial planning process for pro athletes. In 2014 Darling dropped his financial licenses to seek opportunities in the self storage commercial realestate industry in the state of Washington.

Presenters

Devard Darling

Former Wide Receiver, Baltimore Ravens, As One Foundation

Devard Darling is a retired NFL veteran wide receiver and represents the 18% of professional athletes living with sickle cell trait. A native of Nassau, Bahamas, Darling was selected as the 82nd pick in the third round of the 2004 NFL draft making him one of the first Bahamian athletes... Read More →

Hailey Fields

Saturday July 27, 2019 7:00pm - 10:00pm CDT
Prairie D

G: General Sessions, self-Care

9:00am CDT

Meet Me at the Corner of Faith and Science

Join us for some praise and worship during this open breakfast. We will also be voting on where to host the next few meetings (2021/2022). See you there!

Sunday July 28, 2019 9:00am - 11:30am CDT
Prairie D

G: General Sessions, Self-Care