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Thank you for your interest in the 11th Annual Sickle Cell Disease Seminar, sponsored by Cayenne Wellness Center! 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 Cayenne provide event lodging and access to the many Sickle Cell Disease patients we work with. We would greatly appreciate your help!

WELCOME!

Cayenne Wellness Center and Axis Advocacy is pleased to announce the 11th Annual Sickle Cell Disease Educational Seminar.

With over 150 physicians, nurses, social workers, individuals living with SCD & SCT in attendance, last year’s seminar was a major success and our largest to date. We are excited to unite again with you at the 11th Annual Annual Sickle Cell Disease Educational Seminar in San Diego, CA on September 5-7, 2019!

Cayenne Wellness Center’s Annual Sickle Cell Disease Educational Seminar is a three day seminar designed to address the multi-factorial aspects of sickle cell disease and sickle cell trait awareness and education. This year has been shaped by the state of our healthcare system and the opioid crisis sweeping our country, and the seminar focuses on Integrative Medicine and Alternative Treatments.  In addition to presentations on the the pathophysiology, complications, management and treatment of sickle cell disease, the seminar will present on the latest scientific and clinical information related to the disease. On Thursday – September 5, we will hear from those who will assist patients with political advocacy on obtaining evidenced- based management and treatment of Sickle Cell Disease in all CA hospitals (during our Legislative Action Workshop), followed by a session and patient panel on Changing the Climate of Care in the ER.  On Friday – September 6, we will hear from our first Keynote Speaker – Dr. Yutaka Niihara, followed by presentations on alternative treatments for pain management, and a session on Living Long and Well with Sickle Cell. Friday ends with our network reception sponsored Novartis’ Generation S Rock the Block. On Saturday – September 7, we begin with our second Keynote Speaker – Eboni Lance, MD, followed by a multimodal approach including cognitive behavioral treatment (CBT) for depression and anxiety.  In the afternoon, we have a session on complications of Sickle Cell Disease (acute chest syndrome, renal failure/kidney disease) followed by a healing session via Virtual Reality. The seminar will end with a benefit concert held at The Music Box featuring special performers to fund Cayenne Wellness Center’s Sickle Cell Disease Client Assistance Program.

This year’s seminar offers an array of exciting activities designed to educate and motivate the entire community to get involved in the fight against Sickle Cell Disease and Sickle Cell Trait education and awareness.

Target Audience: Individuals living with Sickle Cell Disease and Sickle Cell Trait and their family members, physicians, nurses, social workers, psychologists and community health workers will benefit from these educational offerings.

We look forward to seeing you in September!

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: http://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

 

Jennifer 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

11th Annual Sickle Cell Disease Educational Seminar:
Integrative Medicine and Sickle Cell Disease:
A Multi-Disciplinary 21st Century Approach (Part II)
Program At-A-Glance

(Click here to download PDF)

 

Thursday, September 5, 2019
8:00 am Movement exercise – Stretching
9:00 am Brunch and Registration
10:00 am Legislative Action Workshop (Moderators: Dr. Keith Quirolo, Ashley Valentine, Dr. Marsha Treadwell)
11:00 am Workshop (Breakout Groups)
12:15 pm Wrap Up
 12:30 pm Break
Afternoon/Evening Session
 2:00 pm Sickle Cell Trait (Education and Awareness): CA Department of Public Health, Farron Dozier, Dr. Tomia Austin, and Red Cell Exchange
 3:30 pm Changing the Climate of Care in the E.R. (Drs Ron Brathwaite and Cheryl Brewer)
 4:15 pm Patient Panel
5:15 pm Dinner
5:45 pm Clinical Trials for Sickle Cell Disease – Part I

Gene Therapy and Stem Cells (Moderated by Sandeep Soni, MD)

Bluebird bio; Stanford; City of Hope; Crispr
 7:30 pm Photo Presentation – Celebration of Life followed by a Candlelight Ceremony
 7:45 pm Adjourned
 8:00 pm Special TownHall Meeting – Men and Sickle Cell Disease (sponsored by Cyclerion)
Friday, September 6, 2019
 7:30 am Movement exercise – Yoga
 7:45 am Registration and Breakfast
 8:40 pm Opening Prayer
Cayenne Wellness Center Board Chair; Presentations of Awards
 8:55 am Welcome: Dr. Carolyn Rowley | Cayenne Wellness Center + Dr Adrienne Shapiro | Axis Advocacy
 9:10 am Introduction: Ted Love, MD (Global Blood Therapeutics)
I. Morning Session: Stephanie Mulkey Keynote Speaker Series
Sickle Cell 101: Pathophysiology, Complications, Management and Treatment
 9:25 am Yutaka Niihara, MD Keynote Speaker
10:45 am Break
II. Morning Session: Complementary Approaches to Pain (Moderator: TBD)
11:00 am Introduction
11:15 am Massage Therapy – ProToCol Sports Systems
11:40 am Music Therapy – Samuel Rodgers-Melnick, MR-BC
12:05 pm Herbs and Enzymes – Melissa Welles
12:30 pm Lunch
III. Afternoon Session: End Organ Complications and Treatment (Moderator: Jenny Kim, MD)
 1:40 pm Introduction – Jenny Kim, MD
 1:55 pm Hearing Loss in Individuals Living with Sickle Cell Disease – M. Dawn Nelson, PhD, CCC-A
 2:20 pm Dental Care – Loretta Gilmore, DDS
 2:45 pm Neuropathic Pain and Treatment – Thomas Coates, MD
 3:10 pm Break
IV. Afternoon Session: PsychoSocial
 3:30 pm Living Long and Well with Sickle Cell: Living with a Marked Number

Moderated by: Donnell Ivy, MD, MPH

 3:45 pm Roundtable discussion 
 4:50 pm Housekeeping
 5:00 pm Adjourned
 7:00 pm Generation S Rock the Block (Sponsored by Novartis)

Silent Auction – Proceeds benefit the CA Sickle Cell Disease Client Assistance Program

Saturday, September 7, 2019
 7:30 am Movement exercise – QiGong
 8:00 am Registration and Breakfast
 8:45 am I. Morning Session: Stephanie Mulkey Keynote Speaker Series
The Brain: Executive Functioning and Sickle Cell Disease
  Eboni Lance, MD Keynote Speaker
10:00 am Break
II. Morning Session: Understanding Mental Health in Sickle Cell Disease (Moderator: Charles Jonassaint, PhD)
10:15 am  Overview – Charles Jonassaint, PhD
10:50 am Cognitive Behavioral Therapy for Depression and Anxiety in Sickle Cell Disease (Demonstration) – Anke Reineke Ph.D 
11:40 am Resources – Tanica Jeffries, MSW
12:00 pm Advanced Directive – Carla Lewis
12:20 am Lunch
III. Afternoon Session: Complications (Moderated by: Jenny Kim, MD)
 1:20 pm Introduction – Jenny Kim, MD
 1:30 pm Acute Chest Syndrome – Jenny Kim, MD
 2:00 pm Renal Failure/Kidney Disease – Edgar Lerma, MD
 2:30 pm Break
IV. Afternoon Session. Complementary Approaches to Pain Management.  Healing through Virtual Reality – Simon Robertson
 2:45 pm Introduction – Simon Robertson
Anne Marsh, MD – UCSF Benioff Children’s Hospital and Jincy Paulose, MD – Novartis
 3:30 pm V. Afternoon Session. Clinical Trials for Sickle Cell Disease – Part II

Prophylactic Studies

Global Blood Therapeutics

Emmaus Life Sciences

Imara, Inc.

Cyclerion

Pfizer

Novartis

Bluebird bio

 5:15 pm Evaluations
 5:20 pm Announcement of the 12th Annual Sickle Cell Disease Educational Seminar
 5:30 pm Closing of the 11th Annual SCD Educational Seminar
 5:35 pm Adjourned
 7:30 pm Benefit Concert for the CA SCD Client Assistance Program at The Music Box

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 under the Cayenne Wellness Center block for discount pricing.

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

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

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