SCDC Update
Insider Magazine Features Sickle Warrior Story
Insider Magazine recently published an article on sickle cell trait (SCT). The feature story highlights the journey of New York Jets running back Tevin Coleman, and his wife Akilah Coleman, who both live with SCT and raise a daughter who was born with sickle cell anemia. In the article, Coleman emphasizes the many challenges of the disease, as well as his family’s efforts to raise awareness. Learn more here.
Children’s Sickle Cell Foundation Inc. Living Well with Sickle Cell App
The Children’s Sickle Cell Foundation, Inc. released its Living Well with Sickle Cell app to aid the sickle cell disease (SCD) community. This resource helps SCD warriors to better manage their daily lives by logging and tracking their medical appointments, pain and mood levels, and water intake using an in-app calendar. Warriors can also compare trends between these aspects through a comparison analysis feature. Learn more here.
ASH Bringing Sickle Cell Disease to Life Podcast: Final Episode
The American Society of Hematology (ASH) Bringing Sickle Cell Disease to Life podcast released its final episode titled, “Follow Your Heart.” This episode explores the concepts of putting research into practice, implementation science, and advocacy. Dr. Wally Smith hears from sickle cell pioneer and researcher Dr. Marilyn Hughes Gaston about early research with hydroxyurea. SCD provider and warrior Dr. Titilope Fasipe talks about how she learned to be an advocate to influence public policy. Learn more here.
Watch ASTCT & NMDP Webinar Series Focused on Transplants & SCD: Earn CME Credit Through August
The American Society for Transplantation and Cellular Therapy (ASTCT) and the Be The Match National Marrow Donor Program (NMDP) co-hosted afree webinar series focused on connecting sickle cell warriors with curative treatment options, like transplantation, and supporting warriors and their caregivers throughout the process. Each webinar recording shares insights from both clinicians’ and warriors’ viewpoints. This webinar series is worth 4 CME credit, and is available through August. Learn more here.
NHGRI Democratizing Education for SCD Gene Therapy: Focus Group Opportunity
The National Human Genome Research Institute (NHGRI) is seeking participants for a focus group on democratizing education for SCD gene therapy. This focus group will help researchers understand how to best educate people about gene therapy treatments for SCD warriors, as well as the risks and benefits associated with these treatments. Participants will attend the focus group for 60-90 minutes virtually on Zoom and receive a $40 Amazon gift card as compensation. If interested, please contact the research team: SCDVoices@mail.nih.gov.
Be The Match Advocacy Opportunity: Urge Your Representative to Co-Sponsor the Life Saving Leave Act
Join Be The Match (BTM) to advocate for H.R. 7770, the Life Saving Leave Act. This bill would ensure Americans job protection in the event they take time off work to donate bone marrow or other lifesaving resources. Learn more here.
Sick Cells Resource: Advocacy in the ER Toolkit
Sick Cells has created a toolkit titled, “Advocacy in the ER.” This toolkit includes resources and strategies to help SCD warriors and caregivers advocate for better care before, during, and after an emergency room (ER) visit. Learn more here.
ImpactLife Resource: SCD Awareness Toolkit
ImpactLife recently released its “Sickle Cell Disease Awareness Toolkit.” This toolkit provides SCD facts, message templates for blood donation, and sample social media posts available for the SCD community and stakeholders. Learn more here.
ARC Resource: Blood Donations & SCD
The American Red Cross (ARC) website provides information on the role of blood donations for SCD warriors through its “Blood Donations & SCD” webpage. This resource notes that although there is no widely used cure for SCD, the Red Cross supports one of the most critical sickle cell treatments of all – blood transfusions. Learn more here.
SickleCell.com Article: Mental Health & SCD
SickleCell.com recently published an article titled, “Mental Health and SCD.” This article notes how SCD complications, like pain, fatigue, and sleep disturbance are linked to higher rates of depression in SCD warriors which cyclically can worsen pain crises and lead to substance use disorders. The piece also emphasizes that preventing and treating depression can improve health outcomes and quality of life for SCD warriors. Learn more here.
Novartis Resource: Understanding SCD Fact Sheet
Novartis published a fact sheet titled, “Understanding SCD” to break down the basic science and clinical complications of SCD. Learn more here.
ASGCT Webinar Recording: Life After Gene Therapy
The American Society for Gene & Cell Therapy (ASGCT) hosted a webinar titled, “Life After Gene Therapy.” During this webinar, attendees heard from advocates living with genetic disorders, like Charles Hough, who was diagnosed with SCD when he was two years old. Charles received gene therapy through a clinical trial at NIH in 2017. Learn more here.
**SCD EVENTS**
CMS-NIH Webinar for SCD Clinical Trial Coverage Questions (8/18/22)
The Centers for Medicare & Medicaid Services (CMS), the National Institutes of Health (NIH), and the Medicaid Medical Directors Network (MMDN) will hold a webinar to discuss coverage for participation in SCD clinical trials on Thursday August 18, 2022, from 4:00pm-5:00pm ET. Attendees will learn about emerging therapies for SCD and Medicaid coverage for routine clinical trial costs before participating in a question-and-answer session. Register to attend here.
Sick Cells Coverage for SCD Summit (8/31 /22)
Sick Cells will hold its Coverage for SCD Summit virtually on Wednesday August 31, 2022, from 12:00pm-4:00pm ET. This program brings together payers, providers, pharmaceutical manufacturers, patient groups, researchers, care teams, and policymakers to discuss ways to tackle the complexities of coverage and access to SCD treatments and care. Register to attend here.
SCDC Annual Summit (9/9/22)
The Sickle Cell Disease Coalition (SCDC) will hold its Annual Summit virtually on September 9, 2022, from 10:00am-2:00pm EST. Save the date!
11th Annual Sickle Cell Disease Therapeutics Conference (9/14/22)
Global Blood Therapeutics (GBT) and the Sickle Cell Disease Association of America (SCDAA) will co-host the 11th Annual Sickle Cell Disease Therapeutics Conference on September 14, 2022, from 9:00am-3:00pm EST. The virtual program will provide a forum to discuss the latest advancements and future trends for treating individuals living with SCD. Learn more here.
14th Annual SCD Educational Summit (9/15/22-9/17/22)
Cayenne Wellness Center will hold its 14th Annual SCD Educational Summit virtually, from September 15 to September 17, 2022. The summit is designed to address the multi-factorial aspects of sickle cell disease (SCD) and sickle cell education. Learn more here.
SCAGO Annual Sickle Cell Summit (11/ 4/22-11/5/22)
The Sickle Cell Awareness Group of Ontario (SCAGO) will hold its Annual Sickle Cell Summit virtually from November 4 to November 5, 2022. This two-day CME-accredited summit will be held in collaboration with SickKids Hospital, London Health Sciences Centre, McMaster Medical Centre, and the University Health Network. The summit will support clinicians, patients, their families, policymakers, and those in SCD community advocacy. Register to attend here.
**SCD & COVID-19 RESOURCES**
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