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: 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
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
| 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.
