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Wednesday, August 1
 

4:00pm

Registration
Registration will be open from 4:00PM to 6:00PM. Please register and receive your event materials prior to going to your room.

Wednesday August 1, 2018 4:00pm - 6:00pm
Sheraton Memphis Downtown 250 N Main St, Memphis, TN 38103

6:00pm

 
Thursday, August 2
 

7:00am

Wake Up Well! - Morning Wellness Activity Mindful Breathing/Chair Yoga
Speakers
avatar for Jackie O!

Jackie O!

Jackie O! Holistic Health Practitioner
A health, wellness and self-care practice offering restorative yoga, health & wellness coaching, sabbatical & self-care experiences and nature-based therapies that enhance overall quality of life in spirit, mind and body.


Thursday August 2, 2018 7:00am - 8:00am
St. Louis 250 N Main St, Memphis, TN 38103

8:00am

Registration Display Area Opens
Thursday August 2, 2018 8:00am - 9:00am
Pre-funtion Space

9:00am

Welcome to the 5th Annual Sickle Cell Patient and Family Symposium and Sickle Cell Foundation of Tennessee
Speakers
avatar for Lakiea Bailey

Lakiea Bailey

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 →
avatar for Joseph Lee III

Joseph Lee III

CEO, The Sickle Cell Foundation of TN
avatar for Michael Jackson

Michael Jackson

Advocate, CCHW, Sickle Cell Foundation of TN.
Michael A. Jackson served for 6 years as volunteer board member at SCFT. In 2017, Jackson worked asProgram Coordinator and Certified Community Health Worker (CCHW). He is also an Integrative Nutrition Health Coach (INHC) through the Institute of Integrative Nutrition. He has served... Read More →


Thursday August 2, 2018 9:00am - 10:00am
Heritage Ballroom 250 N Main St, Memphis, TN 38103

10:00am

Money Matters for Warriors/Caregivers
Speakers
avatar for Sandra J. Quinn Bailey, LACP, AU, AINS

Sandra J. Quinn Bailey, LACP, AU, AINS

Founder, Women Financial Power
Hello, my name is Sandra. I am so passionate about insurance & financial services that I've spent over 38 years in the industry. Founded in 2013, Women Financial Power is a business aimed at educating and promoting financial literacy and security to successful individuals and business... Read More →



Thursday August 2, 2018 10:00am - 10:30am
Heritage Ballroom 250 N Main St, Memphis, TN 38103

10:30am

Self-Advocacy: How, When, Why
We should be treated with compassionate care in the health care setting, but often we are not. What can YOU do about it? A lot. This session will guide you towards self or caregiver advocacy in the medical setting. Learn how to file a complaint against a doctor or nurse who mistreats you, fight for your rights,, request an appeal if medication is ever denied, and navigate the healthcare system to work in your favor.

Speakers
avatar for Tosin Ola

Tosin Ola

President & Founder, Sickle Cell Warriors
Ask me anything. I’m an open book. My work in advocacy. How I came up with the term “Sickle Cell Warrior”. My career as a registered nurse. My toddler twins (first babies of the Symposium!), my sickle cell, my dreams for SCW, my aspirations for the future of sickle cell disease... Read More →



Thursday August 2, 2018 10:30am - 11:00am
Heritage Ballroom 250 N Main St, Memphis, TN 38103

11:00am

11:30am

Mental Health & The Warrior
Speakers
avatar for Dr. Charles Jonassaint

Dr. Charles Jonassaint

Assistant Professor, University of Pittsburgh
Dr. Charles Jonassaint is a practicing clinical health psychologist focusing behavioral treatments for pain and mental health in sickle cell disease. He has clinical expertise in chronic disease self-management and cognitive behavioral therapy and has had over 10 years experience... Read More →


Thursday August 2, 2018 11:30am - 12:00pm
Heritage Ballroom 250 N Main St, Memphis, TN 38103
  • NEW FIELD 1 Event Type

12:00pm

Mental Health Panel
Speakers
avatar for Minimarie Andrews

Minimarie Andrews

Mother. Wife. Educator. Advocate
"Sharing my journey and encouraging others through faith, family, real-life experiences and purpose!"Minimarie Andrews is passionate about serving others and providing encouragement. Her mission is to inspire others through living a life purpose lead with intention personally along... Read More →
avatar for Clayton Andrews

Clayton Andrews

LAPC, Treatment Team Facilitator, Behavioral Health Counselor, Sickle Cell Champions Association
Clayton Andrews is a 35-year-old patient with Sickle Cell Disease, residing in Augusta GA. A husband 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 →
avatar for Rosemary Britts

Rosemary Britts

Executive Director, Sickle Cell Association
Rosemary Britts enjoys helping others and takes every opportunity in life to do just that. She is a happily married mother of five children, ages 8 to 28. Her oldest daughter lives with sickle cell disease (SS) which gives her a natural passion for bringing awareness of the disease... Read More →
avatar for Jewel Darbone

Jewel Darbone

Founder/CFO, Bold Lips for Sickle Cell
Jew-EL Darbone is a 29yr old sickle cell warrior dedicated to sickle cell advocacy and empowerment. She is one of the founders and CFO of 501c3 Nonprofit organization #Boldlipsforsicklecell. #Boldlipsforsicklecell started as a social media awareness challenge for sickle cell disease... Read More →


Thursday August 2, 2018 12:00pm - 1:00pm
Heritage Ballroom 250 N Main St, Memphis, TN 38103

1:00pm

Let's Talk About Endari
Speakers
CS

Charles Stark

Sr. VP of Research and Development, emmaus


Thursday August 2, 2018 1:00pm - 2:00pm
Heritage Ballroom 250 N Main St, Memphis, TN 38103

2:30pm

3:30pm

4:00pm

 
Friday, August 3
 

7:00am

Wake Up Well! - Morning Wellness Activity Reflexology
Speakers
avatar for Mia Earl, Ph.D.

Mia Earl, Ph.D.

Natural Health Practitioner, Abundant Life Wellness Solutions
Entrepreneur, Author, The Be Well Specialist, Certified Reflexologist, Certified Health Education Specialist


Friday August 3, 2018 7:00am - 8:00am
St. Louis 250 N Main St, Memphis, TN 38103

9:00am

COMPASS: Guiding the Direction of Sickle Cell Disease Research
Speakers
avatar for Lakiea Bailey

Lakiea Bailey

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 →


Friday August 3, 2018 9:00am - 10:00am
Heritage Ballroom 250 N Main St, Memphis, TN 38103

9:45am

Ironwood: Spotlight on New Clinical Research
Meet Ironwood, a company based in Cambridge, MA, researching a potential treatment for sickle cell disease. Find out more about the core values that motivate us, our sickle cell clinical trial, Ironwood’s plan to spin out a new company focused on rare and other serious diseases next year, and ways we are collaborating with the sickle cell community.
 

Speakers
HJ

Holly John

Ironwood


Friday August 3, 2018 9:45am - 10:00am
Heritage Ballroom 250 N Main St, Memphis, TN 38103

10:00am

10:30am

11:00am

Transplant Talk
Speakers
avatar for Dr. Akshay Sharma

Dr. Akshay Sharma

Attending Physician, St. Jude Children's Research Hospital
I am a pediatric bone marrow transplant physician who specializes in gene therapy and bone marrow transplantation to cure blood diseases such as sickle cell disease.


Friday August 3, 2018 11:00am - 11:30am
Heritage Ballroom 250 N Main St, Memphis, TN 38103

11:30am

11:30am

The Importance of Self-Care
Speakers
avatar for Minimarie Andrews

Minimarie Andrews

Mother. Wife. Educator. Advocate
"Sharing my journey and encouraging others through faith, family, real-life experiences and purpose!"Minimarie Andrews is passionate about serving others and providing encouragement. Her mission is to inspire others through living a life purpose lead with intention personally along... Read More →


Friday August 3, 2018 11:30am - 12:30pm
Memphis 250 N Main St, Memphis, TN 38103

12:00pm

3:30pm

4:00pm

Blood Donation Education & Workshop
During this session we will: 
  • Provide information for sickle cell CBOs to share with warriors about transfusion, complications, and safety measures​
  • Launch Be the Motivation campaign for blood donation ambassadors​
  • Hear from you about patient and family education activities and products related to blood transfusion and blood transfusion history tracking.  

Speakers
avatar for Ashley Singleton

Ashley Singleton

Research Associate, Georgia Health Policy Center
Hello! I am an advocate for minority blood donations. This is so important for safe blood transfusions. Ask me more! I'd be happy to talk to you!



Friday August 3, 2018 4:00pm - 6:00pm
Heritage Ballroom 250 N Main St, Memphis, TN 38103

5:30pm

5:30pm

Closed Session (sign-up Only) Focus Group Fair Treatment For Warrior
We are working on an initiative to ensure a Fair Treatment of Warriors in hospitals and emergency rooms across the country. Hear about our progress this year. We need your input on how to make this program successful. Join us to share your ideas and advice as to the Fair treatment of Warrior’s initiative.

Speakers
avatar for Tosin Ola

Tosin Ola

President & Founder, Sickle Cell Warriors
Ask me anything. I’m an open book. My work in advocacy. How I came up with the term “Sickle Cell Warrior”. My career as a registered nurse. My toddler twins (first babies of the Symposium!), my sickle cell, my dreams for SCW, my aspirations for the future of sickle cell disease... Read More →


Friday August 3, 2018 5:30pm - 6:30pm
Heritage Ballroom 250 N Main St, Memphis, TN 38103
 
Saturday, August 4
 

7:00am

Wake Up Well! - Morning Wellness Activity
Speakers
avatar for Mia Earl, Ph.D.

Mia Earl, Ph.D.

Natural Health Practitioner, Abundant Life Wellness Solutions
Entrepreneur, Author, The Be Well Specialist, Certified Reflexologist, Certified Health Education Specialist


Saturday August 4, 2018 7:00am - 8:00am
St. Louis 250 N Main St, Memphis, TN 38103

9:00am

9:00am

Registration Display Area Opens
Saturday August 4, 2018 9:00am - 10:00am
TBA

12:30pm

1:00pm

Patient Engagement Lunch
Speakers
avatar for Lakiea Bailey

Lakiea Bailey

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 →
avatar for Jewel Darbone

Jewel Darbone

Founder/CFO, Bold Lips for Sickle Cell
Jew-EL Darbone is a 29yr old sickle cell warrior dedicated to sickle cell advocacy and empowerment. She is one of the founders and CFO of 501c3 Nonprofit organization #Boldlipsforsicklecell. #Boldlipsforsicklecell started as a social media awareness challenge for sickle cell disease... Read More →
avatar for Monica Rockwell

Monica Rockwell

Patient Advocate, SWGA Sickle Cell Awareness
For sickle cell patients along with families and friends connecting resources available to them to assist in their health journey.


Saturday August 4, 2018 1:00pm - 2:00pm
Heritage Ballroom 250 N Main St, Memphis, TN 38103

1:00pm

2:15pm

Closed Session (sign-up Only) Focus Group Blood Transfusion Curriculum
Limited Capacity full

This fall we are hosting a Warrior University series focused on blood transfusion and minority blood donation. We take the warrior slogan “Nothing about us, without us” very seriously and want to hear from you!  What are your concerns about blood transfusions?   What should warriors know about blood donations?

Please join Drs. Jim Eckman and Raymona Lawrence for a conversation this Saturday at 2:15 PM in MEMPHIS. We look forward to speaking with you!  

Speakers
avatar for Ashley Singleton

Ashley Singleton

Research Associate, Georgia Health Policy Center
Hello! I am an advocate for minority blood donations. This is so important for safe blood transfusions. Ask me more! I'd be happy to talk to you!


Saturday August 4, 2018 2:15pm - 3:15pm
Memphis 250 N Main St, Memphis, TN 38103

2:15pm

7:00pm