New! Sickle Cell Foundation of Arizona (SCFAZ) Updates:

• New Grants:
  • SCFAZ is a grantee of the Sickle Cell Disease Newborn Screening Follow Up Program (HRSA-21-036).  The purpose of the Follow-Up Program is to facilitate access to quality sickle cell disease (SCD) care by: 1) conducting outreach and working with individuals and families with SCD from the time a newborn screen identifies a child with possible SCD, through diagnosis, treatment and follow-up; 2) providing education to families and providers; 3) disseminating resources; 4) collaborating with state newborn screening programs; and 5) linking individuals and families to community resources, evidence-based SCD care, and care coordination within the communities where they reside to the fullest extent possible.
  • SCFAZ received a subaward from the Sickle Cell Disease Foundation of California for the HRSA COVID-19 Grant. The Networking Sickle Cell for Vaccine Access in the Western Region project will build upon existing programs, services, and activities of CBOs throughout each state, to address COVID-19 vaccine education and increase access to vaccine sites during the 12-month project period. 
• Ongoing Programs:
  • The SCFAZ continues to hold monthly Virtual Support Group Meetings
  • SCFAZ also launched the “Family Financial Assistance and Inclusion” Program which allowed for participation and encouragement of their SC Families. They are currently seeking quotes or messages of encouragement from families to add to their website.
  • SCFAZ continues to grow their endowment with support from the Jewish Community Foundation of Southern Arizona, which helps to support SCFAZ programs.
• Arizona Governor Doug Ducey signed a Proclamation declaring September 2021 as Sickle Cell Disease Awareness Month

New! Dr. Huynh Cao, Principal Investigator (PI) for Loma Linda University’s NCSCC Adult Sickle Cell, received funding in partnership with the Center for Inherited Blood Disorders from the Bristol Myers Squibb Foundation (BMSF) and National Medical Fellowships, Inc. (NMF) to participate in the Bristol Myers Squibb Foundation Diversity in Clinical Trials Career Development Program (BMSF DCTCDP). Dr. Cao will be receiving mentorship from Diane Nugent, MD and Amit, Soni MD and his ultimate goal is to apply these learned experiences and open clinical trials at LLUMC for their adult sickle cell patients and other cancer diseases in the San Bernardino County and Riverside County. Dr. Cao’s main research interest is using immunotherapy (tumor infiltrating lymphocytes, CAR-T), and gene therapy to treat hematologic diseases.  He is also the PI of a translational research lab at LLUMC that focuses on the treatment of acute myeloid leukemia (AML) and other hematologic diseases using these methods.  Thus, he wants to be involved in any clinical trial development within the area of immunotherapy and gene therapy.

New! Networking California for Sickle Cell Care (NCSCC) held its first Annual Clinic Meeting virtually on August 17, 2021. In attendance were more than 90 individuals including staff from all 10 identified adult sickle cell clinics, sickle cell foundation teams, data partners, pharmaceutical representatives and California legislators, Assembly member Mike Gipson and Secretary of State, Dr. Shirley Weber. The meeting kicked off with an overview of the initiative’s history and ongoing work within the network such as data and surveillance being collected at Tracking California, implementation of Health Information Exchange (HIE) at all NCSCC sites, and a patient driven data project entitled Real World Data. The California legislators were recognized during the meeting, as they were essential in moving the NCSCC initiative forward. Dr. Shirley Weber and Mike Gipson spoke to attendees and emphasized the impact that the network is making in the lives of individuals with sickle cell disease. Additionally, updates on workforce development for students and licensed professionals, community health worker (CHW) integration into every NCSCC clinic, and progress on the 2021/2022 RFA Awardees and their projects. The meeting concluded with an introduction to network guidelines and intake forms that will be implemented across the network.

To learn more about the NCSCC, visit the website here

New! Sickle Cell Anemia Awareness of San Francisco (SCAASF) Updates:

• The 8^th Annual KMJ SC Warrior Walk (September 11, 2021): 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. To register, click here 

• Thrive City- Diversity Community Blood Drive (Tuesday, September 7 2021): The Golden State Warriors and American Red Cross are teaming up to host a Thrive City Community Blood Drive for patients in need of lifesaving blood transfusions on Tuesday, September, from 10 a.m. to 3 p.m. The blood drive aims to highlight the importance of having a diverse group of blood donors who may have the unique ability to help patients with different illnesses or inherited diseases including sickle cell anemia.

New! Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29th, and some seats also are available for attending the event in person in San Diego.
 
The 2021 RARE Patient Advocacy Summit will feature a variety of events, workshops, and networking opportunities for the rare disease community. Sessions will focus on three themes: living with a rare disease and patient support, tactics and capacity building for advocates, and leadership skills labs.

Patients and other community members will speak at plenary and keynote sessions about their stories and developments in rare disease research. At the end of each day, there will be “Office Hours” and networking sessions. The summit agenda is available here and a confirmed list of featured speakers here.

To view the agenda and register, click here

New! Sickle Cell Patients are needed for National Institutes of Health (NIH) Kidney Function Study. Doctors at the National Institutes of Health (NIH) seek patients with sickle cell disease to evaluate the best noninvasive predictor of renal function. To learn more about the study #19-H-0100, or other studies, please call at: 866-444-1132.

New! The White House and United States President, Joe Biden issued a proclamation declaring September 2021 as National Sickle Cell Awareness Month and called upon the the United States to learn more about the progress we are making to reduce the burden of this disease on our fellow Americans. To read the official proclamation, click here

New! The Health Resources and Services Administration’s (HRSA), Office of Regional Operations (ORO) Region 5 Chicago in collaboration with the Johns Hopkins Center for Health Equity and the US Coalition on African Immigrant Health will host a two-day will Virtual Conference on African Immigrant Health. This conference will highlight best practices and projects related to health issues affecting African immigrants across the lifespan. Keynote Speakers will highlight Sickle Cell Disease, Cardiovascular Disease and Infectious Disease.

Date: Wednesday, September 8, 2021 and Thursday, September 9, 2021
Time: 10:00 am - 2:30 pm CT | 11:00 am - 3:30 pm ET on both days
Register for the webinar here.

For more information about the webinar, contact ORO Region 5 at Region5@hrsa.gov 

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: September 14, 2021, 12PM-1PM (PST)
Topic: Pain Management in Adults
Presented by: Mohammed Bukari, MD

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! View the latest session of the CDC’s Public Health Webinar Series on Blood Disorders “Hereditary Hemorrhagic telangiectasia in 2021: Diagnosis and Advances in Treatment” presented by Raj Kasthuri, MBBS and Hanny Al-Samkari, MD. In this webinar, Dr. Kasthuri and Dr. Al-Samkari discuss various aspects of HHT including inheritance, clinical manifestations, approach to diagnosis, screening and management. The prevalence of anemia in the HHT population and challenges with its management that are unique to HHT will be emphasized, as will the emergence of systemic therapies to treat bleeding. In particular, systemic antiangiogenic treatments that are changing the treatment landscape of HHT will be highlighted. Additionally, the recently published Second International Guidelines for the Diagnosis and Treatment of HHT will be reviewed and discussed.

To view this webinar, click here

To view other archived webinars in this series, click here
 

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.