New! Dr. Akshat Jain, MD MPH, Sickle Cell Center Director at Loma Linda University Children’s Hospital was interviewed by ABC news to provide an expert perspective on updates of hematologic changes from COVID-19 vaccines.

To watch the interview, click here.

New! Phoenix Children’s Hospital held a ‘Night at the Drive-in’ to celebrate their 2021 Combined Bleeding Disorder Day and World Sickle Cell Day on June 5, 2021. This event allowed families of patients with sickle cell disease and hemophilia populations to gather in one larger event this year. Those who attended had a great time and the staff connected with the patients and their families when checking in, handing out goodie bags and watching a fun movie.

New! Cayenne Wellness Center was the recipient of the Global Blood Therapeutics (GBT) Access to Excellent Care for Sickle Cell Patients (ACCEL) Grant on June 15, 2021. The program, which is in its third year and increased the total funding and number of grantees from 2020, provides support to accelerate the development of sustainable access-to-care programs for people living with sickle cell disease.

GBT launched the ACCEL program in February 2019 to fund U.S.-based nonprofit organizations that serve patients with SCD and their families and seek to improve their access to high-quality healthcare. Funding was increased to approximately $450,000 in 2021 with the goal of supporting additional initiatives, including those that address racial equity and COVID-19 vaccine awareness among the SCD community. A panel of GBT management and external stakeholders familiar with the issues impacting people with SCD reviewed the proposals received this year and chose grant recipients based on the strength of their submission, level of innovation, and greatest potential impact to patient care.

To learn more about the GBT ACCEL grant and its recipients, click here.
To learn more about Cayenne Wellness, click here.

New! The Sickle Cell Disease Foundation will be hosting Camp Crescent Moon: A Virtual Camp for Children with sickle cell disease from July 17-23, 2021. SCDF provides a free virtual camp experience for children with sickle cell disease ages 6-15 to educate, empower, stay connected, and have fun. All campers will be sent an activity box with all the supplies needed to effectively participate in the programs and activities. The campers will also receive exclusive camp kits. During the 4-day camp, campers will participate in programs, group activities, hang out and bond in virtual cabins with assigned counselors and cabin mates. Throughout the camp week, campers will also participate in raffles to win prizes.
 
Theme: Let’s try this again

Dates: July 17-23 (camp meets every other day)
July 17, July 19, July 21, July 23

Programs/Activities:
- Designer Genes- Education program
- Dance
- Science
- Arts-n-Crafts
- Scavenger Hunts
- Escape Rooms
- Camp Throw Down
- Cabin Chant Competition
- Boys and Girls Day
 
Visit Camp Crescent Moon’s website for more information, here
To learn more about the Sickle Cell Disease foundation, click here

New! The KIS Foundation celebrated World Sickle Cell Day with a free virtual experience of physical fitness demonstrations and informative interviews with advocates and those living with Sickle Cell Disease on June 19, 2021.

To learn more about the KIS Foundation, click here

New! On June 2, President Joe Biden announced a National Month of Action to mobilize an all-of-America sprint to get 70% of U.S. adults at least one shot by July 4^th, so that more people can get the protection they need to be safe from a pandemic that has taken the lives of nearly 600,000 Americans.

Here are resources below to support the uptake of COVID-19 vaccines among your programs and partnerships:

• The Administration’s organizing efforts, including Community Canvassing, Phone Banking, Text Banking, and Vaccination Events, will focus on ensuring everyone has equitable vaccine access: person-to-person action that connects people with key resources and information like Vaccines.gov, text 4-3-8-8-2-9, the National COVID-19 Vaccination Hotline (1-800-232-0233), and more. MCH programs can support these efforts by visiting https://wecandothis.hhs.gov/ which includes available resources that you can use to support the communities you serve
• Visit https://www.vaccines.gov/incentives.html  to learn more about some available vaccine incentives.

To learn more about estimates for vaccine hesitancy in the local communities, counties, and states you serve, visit the Office of The Assistant Secretary for Planning and Evaluation mapping tool here.

For more information on COVID-19 Vaccinations for Children and Teens, visit the CDC resources here and the We Can Do This resources page for here, which includes an Adolescent COVID-19 Vaccinations Toolkit among other resources.  

New! PSCRC Project ECHO (Extension for Community Healthcare Outcomes) is a telementoring series designed for clinical providers to bridge the gap between a network of local providers and pediatric and adult SCD specialists. The Project ECHO model increases access to specialist level knowledge for treatment in underserved areas by providing front-line clinicians with the knowledge and support they need to manage patients with complex conditions. Project ECHO calls occur on a monthly basis as a one-hour video conference that includes case presentation, didactic, and review.

The next PSCRC Project ECHO Telementoring session:

Date & Time: July 27, 2021; 12:00PM-1:00PM, PST
Topic: Anesthesia in Sickle Cell
Presented by: Bender, MD Seattle Children’s Hospital, Odessa Brown Children’s Clinic

You can register for all upcoming Project ECHO calls and view past recordings directly on the PSCRC website

New! SAPPORT (Sickle Cell Disease Advanced Practice Provider Opportunities Resources and Training) Program is currently offering monthly ECHO telementoring sessions on the 1^st Wednesday, 1:00PM-2:00PM, PST hosted out of Atrium Health for advanced practice providers (APPs)
 SAPPORT is offering two new opportunities for APPs:

1. An additional monthly ECHO telementoring series hosted out of Johns Hopkins University, on the 3^rd Thursday of each month 9:00AM-10:00AM, PST
2. A certificate training program that includes an online curriculum and a 2-4 week observership

  
To formally enroll to attend the additional monthly ECHO telementoring session for APPs hosted out of Johns Hopkins University OR the training program please register/apply here

New! Register for the National Heart, Lung, and Blood Institute Workshop: The Promise of NHLBI Big Data, which will be held on July 20, 2021 (10-5:30PM) and July 21, 2021 (10-4:45PM). During this workshop, experts in big data, health, and computer science will provide early-, mid-, and late-stage investigators, as well as graduate students, the opportunity to learn about NHLBI health datasets and how to use them (e.g., BioData Catalyst), and the value of collaborations between domain experts and computer scientists, engineers, and statisticians. Workshop participants will have the opportunity to contribute to a needs assessment being conducted to ensure diverse participation in heart, lung, blood, and sleep data science.

To learn more about the workshop and view the agenda, click here.
To register for the workshop, click here.

New! Cultural Competency Training: Equity & Inclusion Series: The Cross Cultural Health Care Program Equity & Inclusion Summer Learning Series includes four one-hour webinars on cultural competence issues such as language, social and cultural behaviors, Western medicine, and community partnerships.

• The Range of Our Differences, July 7, 4:00 pm ET
• Health Disparities: The Core Paradox, July 28, 4:00 pm ET
• Involving the Community, August 4, 4:00 pm ET

New! Watch the CDC’s National Center on Birth Defects and Developmental Disabilities’ latest webinar, ‘Bone Marrow Transplantation and Other Curative Approaches in Thalassemia.’ This webinar is apart of their Public Health Webinar Series on Blood Disorders and took place on June 24, presented by Alexis A Thompson, MD, MPH. In this webinar, Dr. Thompson will describe the considerations for stem cell transplantation, including patient characteristics, donor stem cell sources, and preparative regimens that impact clinical outcomes. She will provide an overview of genomic therapies, such as gene addition and gene editing, and review the results of clinical studies on thalassemia. While most of her presentation will focus on beta thalassemia, she will also describe curative approaches to alpha thalassemia.
 
Learning Objectives:

1. Describe the options for stem cell transplantation for thalassemia.
2. List the key considerations in choosing curative therapies.
3. Provide updates on advances in genomic therapies for thalassemia.

New! Sickle Cell Disease Centers Workshop: As part of a February 2021 Sickle Cell Disease (SCD) Centers Workshop, the American Society of Hematology has developed a series of free 15-minute modules to address common clinical practice topics, including new treatment approaches for patients with SCD. These modules are intended as tools for health care providers in their development toward becoming adult SCD centers. The modules are available to all and can be viewed in any order. Continuing Medical Education (CME) credit is available.

Workshop Faculty include PSCRC’s Marsha Treadwell, PhD, UCSF Benioff Children’s Hospital, Susan Claster, MD, Martin Luther King, Jr., Outpatient Center/LA County Department of health Services, and Mary Brown, Sickle Cell Disease Foundation.

To learn more about the Sickle Cell Disease Centers Workshop, click here

New! Sickle Cell Disease Centers Workshop: As part of a February 2021 Sickle Cell Disease (SCD) Centers Workshop, the American Society of Hematology has developed a series of free 15-minute modules to address common clinical practice topics, including new treatment approaches for patients with SCD. These modules are intended as tools for health care providers in their development toward becoming adult SCD centers. The modules are available to all and can be viewed in any order. Continuing Medical Education (CME) credit is available.Workshop

Faculty include PSCRC’s Marsha Treadwell, PhD, UCSF Benioff Children’s Hospital, Susan Claster, MD, Martin Luther King, Jr., Outpatient Center/LA County Department of health Services, and Mary Brown, Sickle Cell Disease Foundation.

To learn more about the Sickle Cell Disease Centers Workshop, click here

New! Upcoming Cayenne Wellness Webinars:

The 13^th Annual Sickle Cell Disease Educational Seminar will be held virtually from September 16-18, 2021, hosted by Cayenne Wellness and Axis Advocacy. 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. The 13th Annual Virtual Sickle Cell Disease Educational Seminar is designed for nurses, health care professionals, providers, educators, social workers, students, individuals with sickle cell disease and their families and the community at large. The purpose of this educational activity is to strengthen the participant’s knowledge base about sickle cell disease and sickle cell trait through lecture, discussion and sharing of current and future treatment regimens. In addition to presentations on the pathophysiology, complications, management, and treatment of sickle cell disease, the seminar will present the latest scientific and clinical information related to the disease.

This year’s theme for our 13th Annual Virtual Sickle Cell Disease Educational Seminar is “Sickle Cell Disease: Steppin’ Into Tomorrow”.

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.

CME Credits will be offered this year.

To learn more and register, click here.

Cayenne Wellness Center will be presenting a mini-seminar about Sleep and Sickle Cell Disease on July 24, 2021 11:00AM-1:00PM, PST.

Objectives:

• Review consequences of poor sleep in children
• Describe common sleep problems experienced by children and adolescents with SCD
• Discuss strategies for improving sleep in children and adolescents

• Sleep and Sickle Cell Disease – An Adult Perspective (July 24, 2021)
• Sleep and Sickle Cell Disease – Part Three (November 13, 2021)

To learn more and register, click here

New! Watch Sickle Cell Data Collection’s latest Webinar “Community Engaged Education Materials for Sickle Cell Disease Gene Therapy”. This webinar focused on data on the quality and accessibility of the current state of gene therapy patient educational materials. Presenters made a case for the need to engage a variety of stakeholders (from scientists and clinicians, to patients and advocates) to create open-access educational materials to support informed decision-making for sickle cell gene therapy.

To watch is webinar, click here
To view all recorded webinars, click here
To learn more information about the Sickle Cell Data Collection, visit their website here

New! In recognition of World Sickle Cell Day, the Office of Minority Health highlighted a few resources to learn more about Sickle Cell Disease:

• Annals of Emergency Medicine, published a supplement on SCD in September 2020: The State of Sickle Cell Disease Care in the United States: How Can Emergency Medicine Contribute? To view the journal, click here.
• Webpage showing clinical trials related to a sickle cell disease cure that will work for all patients are being conducted as part of the National Institutes of Health’s Cure Sickle Cell Initiative. The goal of this initiative is to advance the development of new gene- and cell-based therapies for sickle cell disease within the next five to 10 years. See the NIH map of privately and publicly funded clinical studies around sickle cell disease in the U.S.

• Book published by the National Academies of Sciences, Engineering, and Medicine, Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. This extensive analysis presents demographic data, current best practices, needed research priorities, and suggestions for community action. To read this publication, click here

New! Upcoming Clinical Trials:

Sickle Cell Disease and the Genomic and Gene Therapy Needs of Stakeholders

This study, sponsored by St. Jude Children's Research Hospital and the NIH National Heart, Lung, and Blood Institute (NHLBI), seeks parents or legal guardians of adolescents age 13 years or older diagnosed with sickle cell disease. The study will be carried out at the St. Jude Children's Research Hospital in Memphis, Tennessee. To learn more about this trial, click here

Red Blood Cell Survival in Sickle Cell Disease

This study, sponsored by Emory University and the NIH NHLBI, seeks sickle cell disease patients age 6 years or older who are receiving chronic transfusion therapy. The study will be carried out at the Hughes Spalding Children's Hospital, Children's Healthcare of Atlanta, and the Grady Health System in Atlanta, Georgia. To learn more about this trial, click here