New! The Sickle Cell Disease Foundation (SCDF) was the recipient of a $1,000,000 Award from the Health Resources and Services Administration (HRSA) to support local community-based workforce to increase COVID-19 vaccine access. The purpose of this program is to address COVID-19 related health disparities and advance health equity by mobilizing community outreach workers to educate and assist individuals in getting the COVID-19 vaccine. 

The Sickle Cell Disease Foundation will use their existing network of Sickle Cell community based organizations (CBO) in the Western United States to rapidly assemble teams in California utilizing the SCDF satellite offices and CBO partners across five additional states, including Nevada, Oregon, Washington, Arizona, and Colorado, to meet the need of increasing vaccine access among the sickle cell disease (SCD) population. The SCDF will lead this network of SCD CBOs by providing technical assistance to employ specialized teams that will address COVID-19 vaccine education and increase access to vaccine sites during the 12-month project period. Networking Sickle Cell for Vaccine Access in the Western Region will build upon existing programs, services, and activities of CBOs throughout each state, guided by their statewide action plan to impact the target population. 

For more information, please contact: Ron Espinolla, Project Coordinator 909-743-5226  

New! Dr. Akshat Jain, MD MPH, Sickle Cell Center Director at Loma Linda University Children’s Hospital, was recently elected as a fellow to the Royal College of Physicians of Edinburgh. Fellowship is awarded to consultants of equivalent recognizing clinical achievement and contributions to their field. 

To read more about Dr. Jain’s election as a fellow to the Royal College of Physicians of Edinburg, click here 

New! Sickle Cell Anemia Awareness (SCAA) of San Francisco is hosting their Annual KMJ SC Warrior Walk this coming September to recognize those struggling with this disease and those that have already passed on from this disease as well as lives lost on 9/11. This walk will be held on September 11, 2021 from 10AM-2PM at the Bayview Opera House. 

For registration information, click here 

New! On July 20, 2021 the governing Board of the California Institute for Regenerative Medicine (CIRM) awarded $8.39 million to the University of California, San Francisco (UCSF) to fund a clinical trial for sickle cell disease (SCD).  An additional $51.08 million was awarded to fifteen community colleges and universities across California to fund undergraduate and master’s level programs that will help train the next generation of stem cell researchers.   

Mark Walters, M.D., and his team at UCSF Benioff Children’s Hospital Oakland will be conducting a clinical trial that uses CRISPR-Cas9 gene editing technology to correct the genetic mutation in the blood stem cells of patients with severe SCD.  The corrected blood stem cells will then be reintroduced back into patients with the goal of correcting the defective hemoglobin and thus producing functional, normal shaped red blood cells. 

To read the full press release, click here 

To learn more about the CIRM, click here 

New! The National Heart, Lung, and Blood Institute (NHLBI) announced the winners for the Hope for Sickle Cell Disease Challenge. The first place prize winner was awarded to the creators of an educational game, “GRAPES,” a game to raise awareness for patient/provider/ public education of sickle cell disease. This trivia-based game equips patients and medical providers to make more informed decisions about managing sickle cell disease. It provides information about the causes of the disease, its symptoms, and its treatment. The game revolves around different sets of questions about sickle cell disease. Players move through these sets, or modules, and collect badges when they answer the questions correctly. Gameplay concludes with the sharing of patient resources (e.g., local member organizations of the Sickle Cell Disease Association of America, as well as the NHLBI, the American Society for Hematology, Be the Match, and various clinical trials). 

Tool Overview Video: https://youtu.be/CkM5o8jkAeMexternal link 

Tool: https://www.tinyurl.com/GRAPESgame 

 To view the other tools awarded in the Hope for Sickle Cell Disease Challenge, click here 

New! GBT Awarded $450,000 in ACCEL Grants to Improve Access to Care in Sickle Cell Disease as part of the company’s 2021 Access to Excellent Care for Sickle Cell Patients (ACCEL) Grant Program. 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 (SCD). 

GBT has awarded 2021 ACCEL grants to the following recipients: 

Community-based Organizations 

• Cayenne Wellness Center (Burbank, California) – Project PLACE: Locating Persons with SCD, Assessing & Coordinating Services & Education for a community outreach model to improve the transition from pediatric to adult care for SCD patients in rural areas of California 

• Sick Cells (Chicago, Illinois) – Project SCoviD for increasing COVID-19 vaccine awareness in the SCD community across the U.S. 

• Sickle Cell Community Consortium (Cumming, Georgia) – Project PEEP: Patients Empowered and Educated Providers for a curriculum to empower SCD patients in the U.S. to navigate the healthcare system and educate healthcare providers about the impact of race and healthcare disparities 

• Supporters of Families with Sickle Cell Disease (Tulsa, Oklahoma) – Oklahoma System of SCD Care for serving as a hub connecting SCD patients and families with health and social service resources 

• The Sickle Cell Foundation of Tennessee (Memphis, Tennessee) – Collaborative Conversations: Breaking Down Silos to Improve Care for People with SCD for building a collaborative community network to mitigate social determinants of health 

To read the full press release, click here 

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: August 5, 2021 12:00PM-1:00PM (PST)
Topic: Challenges in RBC Exchange
Presented by: Nik Rashid, MD Hemostasis and Thrombosis Center of Nevada (HTCNV)

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

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

Involving the Community, August 4, 4:00 pm ET

New! Sickle Cell Anemia Awareness of San Francisco's Advocacy & Empowerment Session on August 14, 2021 at 11AM PST. 

The Advocacy and Empowerment Program consists of one 3 hour webinar designed to empower attendees with core educational content on SCD (Sickle Cell Disease); pain management; emergency preparedness, and the exploration of self-advocacy.

There will be a variety of presenters’ clients, nurses, physicians, medical professionals, and business professionals sharing and discussing important issues that affect the sickle cell community. It is SCAA's hope that these sessions will help to create a clearer understanding of all the stakeholders' roles as we develop a better perception.

To register, click here
To learn more about AEP Sessions, click here

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! 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.
 

New! View the Council of Academic Family Medicine Educational Research Alliance (CERA) sponsored webinar on Ethical Challenges in Novel Gene Therapies for Sickle Cell Disease from June 11, 2021. Pilar Ossorio, JD, PhD, moderated this session with panelists Liza-Marie Johnson, MD, MPH, MSB, and Melissa Creary, PhD, MPH, describing the current state of therapy for sickle cell disease, and some ethical issues that arise in the emerging use of gene transfer or gene editing for treating the disease. Dr. Johnson focused on ethical issues identified by patients, and Dr. Creary discusses some of the social and historical ethical challenges that relate to genetic interventions for sickle cell.  

To view the webinar, click here 

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! CDC shared resources s to educate about blood transfusions and to raise awareness about the importance of minority blood donations.   

Animated Video Series: “Blood Transfusions: What You Need to Know and Do.” 

 A red blood cell transfusion is a common procedure that is usually safe. Sometimes, however, this procedure can cause health problems, such as infections and iron overload (a buildup of excess iron in the body). Watch this six-part animated video series about what you can do to lower your risk of health problems related to blood transfusions: 

• Episode 1: What are blood transfusions?  

• Episode 2: Understanding your blood  

• Episode 3: Transfusion reactions  

• Episode 4: Testing, tracking, and knowing your normal  

• Episode 5: All about iron  

• Episode 6: Diversify the blood supply 

New Social Media Graphics! 

• A blood transfusion is safest when blood is a close match between the person who donated the blood and the person receiving the blood. The best chance of a match is between people of similar ancestry. Learn more from CDC’s new social media graphics on thalassemia. Share them with your friends and family on social media channels, such as Facebook, Twitter, and Instagram. 
  
  See Social Media Graphics Below:

Blood Donation Resources 

• Visit MySleevesUp.com to find educational resources and tools about blood donation and transfusions, and learn how you can help spread the word about blood donation in your community.  

• Want to donate blood? Watch “The Importance of Blood Donation,” a short, educational video outlining the steps to donating blood and why your donation matters.  

• Watch “Blood Donations Needed Among African Americans” and learn how blood donations can help save the lives of people with SCD. Share this video with family and friends on social media to spread awareness about the importance of minority blood donations!  

• Read the Be the Motivation for Blood Donation pamphlet. Minority blood donations are important for people with SCD because blood from people of similar racial backgrounds are more likely to match, leading to fewer health problems for the recipient.  

• Sickle Cell Disease: Give Blood, Save a Life Podcast. This CDC podcast highlights the importance of blood donations from African Americans to help people with sickle cell disease who might need one or more blood transfusions. 

• Blood Donation Resources page. This page offers information on why donating blood is so important, where you can donate locally, and what you can do to spread the word.  

Want to learn more about SCD? Visit CDC's SCD website.