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Thank you for your interest in the 12th Annual Sickle Cell Disease Educational Seminar, hosted by Cayenne Wellness Center and Axis Advocacy.  Use the tabs below to learn more about the event – to register right away, click the “Register/Get Tickets” tab to choose your ticket type. And please consider making a donation to help the Cayenne Wellness Center provide event lodging and access to the many Sickle Cell Disease Warriors we work with. We would greatly appreciate your help!

WELCOME!

Celebration of Life

On Thursday, September 5, 2019 at 7:30 pm, during the 11th Annual Sickle Cell Disease Educational Seminar, we will be honoring our loved ones diagnosed with Sickle Cell Disease whom have passed on.

Though you are welcome to attend the seminar and the Celebration of Life Ceremony, you do not need to be present to honor your loved one. Here are the details:

Step 1:

  • Submit a high-resolution photo of your loved one here – https://dropevent.com/send83979 <https://dropevent.com/send83979>
  • In the caption, type their Name, Date of Birth, Date of Passing and Country.
    Example: Charlie Brown • DOB: 1.1.1940 • DOP: 1.1.2019 • Brazil
  • The deadline to submit your photo(s) is Friday, August 2, 2019.We will be live streaming the event, so you can be present no matter where you reside.
    There is no limit on the number of Celebration of Life honorees.For questions, contact Juanita Hampton, Program Manager at juanita@cayennewellness.org

For more information on the 11th Annual SCD Educational Seminar, click here: https://cayennewellness.org/2019-scd-seminar/

Presenters

 

Tomia Austin, DrPH

Executive Director, As One Foundation

 

Rahul Ballal, PhD

CEO, Imara Inc.

 

Cheryl Brewer, PhD

Associate Vice President of Nursing

Private Diagnostic Clinics at Duke Health

 

Ken Bridges, M.D.

Vice President of Global Blood Therapeutics

 

California Department of Public Health

 

Thomas Coates, M.D.

Division Head of Hematology

Director, Sickle Cell and Hemoglobinopathy Program, Children’s Center for Cancer and Blood Diseases at Children’s Hospital Los Angeles

 

Ellen K. Donnelly, PhD

Chief Executive Officer, Modus Therapeutics

 

Farron Dozier

Founder, WhatzDaCount

 

Beverley Francis-Gibson

President and CEO, Sickle Cell Disease Association of America, Inc.

 

Loretta Gilmore, DDS

 

Anya Griffin, PhD

 

Edward Donnell Ivy, MD, MPH

Medical Officer, Maternal and Child Health Bureau

Health Resources and Services Administration

 

Tanica Jeffries, MS, LPC, LSW

Clinical Program Coordinator

Comprehensive Sickle Cell Disease and Thalassemia Services

Hematology/Oncology/BMT-Center for Childhood Cancer and Blood Diseases

 

Mike Julian

 

Jenny Kim, M.D.

Director, Comprehensive Sickle Cell Center

Rady’s Children Hospital

 

KEYNOTE SPEAKER

Eboni Lance, M.D.

Medical Director, Sickle Cell Neurodevelopmental Clinic

Kennedy Krieger Institute

Assistant Professor, Neurology

Johns Hopkins University School of Medicine

 

Edgar Lerma, MD, FACP, FASN, FPSN (Hon)

Clinical Professor of Medicine

Section of Nephrology

University of Illinois at Chicago College of Medicine/ Advocate Christ Medical Center

Oak Lawn, IL

 

Carla Lewis

CEO & Founder, Kids Conquering Sickle Cell Disease Foundation, Inc.

 

Ted Love, M.D.

Global Blood Therapeutics

 

Shona Stephens Markham, MPH

Board Chair, Cayenne Wellness Center

 

Anne Marsh, M.D.

 

Faye McGrew

 

Krista McKerracher

VP & Head, Hemoglobinopathy Programs

CRISPR Therapeutics

 

Dawn Nelson, Ph.D. CCC-A

Central Michigan University

 

KEYNOTE SPEAKER

Yutaka Niihara, M.D.

Emmaus

 

Jincy Paulose, M.D.

Medical Director – Iron Overload and Sickle Cell Disease (IO & SCD)

U.S. Oncology Medical

Novartis Pharmaceuticals Corporation

 

Simon Robertson

CEO, Kind VR

 

Samuel Rodgers-Melnick, MT-BC (Music Therapist -Board Certified)

UH Connor Integrative Health Network

University Hospitals Seidman Cancer Center

 

Keith Quirolo, M.D.

 

Joseph Rosenthal, M.D.

Barron Hilton Professor & Chair in Pediatrics

Director, Pediatric Hematology/Oncology

City of Hope

 

Adrienne Shapiro, EdD

Founder, Axis Advocacy

 

Sandeep Soni, M.D.

Assoc. Prof. of Pediatrics

Div. of SCT & RM

Stanford University

 

Marsha Treadwell

Clinical Psychologist

Director, Northern California, Network of Care for Sickle Cell Disease

 

Ashley Valentine, MRes

Co-Founder & President, Sick Cells

 

Melissa Welles, C.N.H.P.

Nutritionist, Natural Body Repair

 

Kevin Williams, M.D., J.D., M.P.H.

Chief Medical Officer, Rare Disease

Pfizer Innovative Health

Pfizer, Inc

12th Annual Sickle Cell Disease Educational Seminar:
A Global Approach to Sickle Cell Disease:
Tentative Program At-A-Glance
click here to download the schedule

 

Thursday, September 17, 2020

7:30 am Movement exercise – Stretching

8:00 am Brunch and Registration

Legislative Action Workshop (Moderator: Dr. Keith Quirolo, Dr. Diane Nugent, Maggie Jalowsky)

9:15 am Panel Discussion

10:30 am Workshop (Breakout Groups)

11:45 am Wrap Up

12:00 – 2:00 pm Lunch

Afternoon Session I:

2:00 – 3:15 pm Sickle Cell Trait (Education and Awareness):
CA Department of Public Health, Farron Dozier, Dr. Rakhi Naik

3:15 – 3:30 pm Break

3:30 – 5:00 pm Afternoon Session II:

Clinical Trials for Sickle Cell Disease – Part I
Gene Therapy and Stem Cells (Moderated by Anjulika Chawla, MD)

Crspr/Vertex

bluebird bio

CSL Behring

5:00 pm Dinner

5:45 pm Video Presentation – Celebration of Life followed by a Candlelight Ceremony (Moderated by Sheila Marchbanks)

6:00 pm Adjourned

 

Friday, September 18, 2020

7:30 am Movement exercise – Yoga

7:45 am Registration and Breakfast

8:55 am Cayenne Wellness Center Board of Directors (Shona Markham, President)

9:10 am Introduction: Corey Hebert MD

I. Morning Session: Stephanie Mulkey Keynote Speaker Series
Sickle Cell 101: Pathophysiology, Complications, Management and Treatment

9:30 am Professor Dame Elizabeth Nneka Anionwu – UK

10:45 am Break

II. Morning Session: Living Well With Sickle Cell Disease (Moderator: Alexis Thompson, MD)

11:00 am Introduction

11:15 am Patient Panel – Global
Represented will be patients from Bahrain, France, Kenya, Brasil, Australia, Canada, and the U.S.A.

12:30 pm Lunch (provided)

Men Living With Sickle Cell Disease; Adolescents Living With Sickle Cell Disease

2:00 pm Summary of Lunch Presentations

2:30 pm III. Afternoon Session: Sickle Cell Disease and the Battle for Equality, Justice, and Respect – Ahmar Zaidi, MD

3:45 pm ASH Update on Sickle Cell Disease

4:30 pm Adjourned

7:00 pm Network Reception. Generation S Rock the Block (Sponsored by Novartis)

 

Saturday, September 19, 2020

7:30 am QiGong

7:45 am Registration and Breakfast

9:00 am I. Morning Session: Pat Corley, RN Keynote Speaker Series
The Brain: Executive Functioning and Sickle Cell Disease (Part II)

Eboni Lance, MD Keynote Speaker

10:15 am Break

II. Morning Session: Understanding Mental Health in Sickle Cell Disease (Moderator: Charles Jonassaint, PhD)

10:30 – 12:00 pm Overview – Charles Jonassaint, PhD

Depression, Anxiety, Grief and Hopelessness

Suicide Prevention Center

Solution Focused CRM Model – Beverly Buckles

12:00 pm Lunch (provided)

Women Living With Sickle Cell Disease; Spouses and Caretakers Living With SCD

1:30 pm Summary of Lunch Presentations

2:00 pm  III. Afternoon Session. Treatment Therapies and Sickle Cell Moderated by Adrienne Shapiro, Axis Advocacy

Global Blood Therapeutics – Ken Bridges, MD
Emmaus Life Sciences – Charles W. Stark, Pharm.D. Novartis – Jincy Paulose, MD
Imara, Cyclerion, Terumo BCT and another pipeline therapies

3:40 pm Evaluations

3:45 pm Announcement of the 13th Annual Sickle Cell Disease Educational Seminar

4:00 pm Closing of the 12th Annual SCD Educational Seminar

4:00 pm Adjourned

DIAMOND LEVEL

 


RUBY LEVEL

 

 


PLATINUM LEVEL

 

       

GOLD LEVEL

 

 

          

 


SILVER LEVEL

 

       

BRONZE LEVEL


COMMUNITY SPONSORSHIP


MEDIA SPONSOR

PLEASE NOTE: TRANSPORTATION IS INCLUDED IN THE PRICE OF ADMISSION FOR PEOPLE WITH SICKLE CELL.

VENUE: San Diego Marriott Mission Valley

Address: 8757 Rio San Diego, CA 92108, United States

The 11th Annual Sickle Cell Disease Educational Seminar will be held at the San Diego Marriott Mission Valley. The address is: 8757 Rio San Diego Drive • San Diego, CA 92108

For Patients: Your fee of $50.00 includes your hotel stay. Please note that you will have to room with another patient. The Program Manager will contact you shortly after registration.

For Caretakers and Patients attending together: Your combined fee of $100.00 includes your hotel stay. Please note that you will room with each other. The Program Manager will contact you shortly after registration.

For Others: Your registration fee does not include lodging. We ask that you contact the hotel at 619-692-3800 and book your room or click on the link below. Our discount rate ended on August 14, 2019. We’re looking forward to seeing you.

Book your group rate for 11th Annual Sickle Cell Disease Educational Seminar Sep2019

 

For hotel reservations, contact Katryna Dillard (619) 209-6610 or Allison at Muhar (619) 209-6609.  Let them know that you will be attending the Cayenne Wellness Center Sickle Cell Disease Educational Seminar.

For more information, feel free to contact Juanita Hampton, Program Manager at 818-940-0079. Thank you.

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