The St. Petersburg Chapter of the Sickle Cell Disease Association of America, Inc., celebrated its 50th Anniversary this year.

Thanks to all who have supported the organization throughout the years. You are appreciated!

Please join us as we commemorate our 50th Anniversary on September 24, 2022, at our Sickle Cell Benefit Dinner and Musical Extravaganza held at The University of South Florida.

Register Here

When:

Sat, September 24, 2022

5:00 PM – 8:30 PM EDT

Where:

The University of South Florida - USC Ballroom

200 6th Avenue South

St. Petersburg, FL 33701, USA

This event has ended.

A free week-long camp for children ages 7-17 years old who are diagnosed with cancer and sickle cell disease. To attend Summer Camp, campers must be fully vaccinated for COVID-19.

Date:
July 24 – 28, 2023

Location:
JWCF at RoundUp River Ranch
8333 Colorado River RD
Gypsum, Colorado, United States

The Sickle Cell Consortium is officially launching the Sickle Cell Warrior Network. Over the years, the Consortium has provided some fantastic educational videos through Warrior University, Leadership Summit, and Warrior’s Convention. This has been thought long and hard about what to do with those videos, and The Sickle Cell Warrior Network is here. The Sickle Cell Warrior Network houses over fifty free educational videos you can watch at your own pace or over and over.

To join the Sickle Cell Warrior Network, go to https://scwarriornetwork.org/

The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee (MARAC) is aware of the news about monkeypox and is monitoring the situation. Please follow advisories from organizations such as the Centers for Disease Control and Prevention to avoid close, skin-to-skin contact with individuals who have a rash that looks like monkeypox.

Learn more from the CDC here and read the CDC monkeypox FAQs here.

The Big Picture from SCDAA MARAC
Individuals with sickle cell disease are more likely to have complications from many infections and receive a lot of benefits from immunizations. Family members can help protect a child or adult with sickle cell disease by also getting immunizations. Immunizations and vaccines protect people from serious diseases. The possible risks from a vaccine are much smaller than the possible bad outcomes from the diseases.

Streptococcus pneumoniae
• Streptococcus pneumoniae bacteria was a leading cause of death for children with SCD.
• Infection with S. pneumoniae can move quickly from fever to extremely sick in the intensive care in just a few hours for children with SCD. Losing spleen function due to clogging of the spleen with sickle red blood cells is what makes S. pneumoniae bacteria so dangerous for SCD patients.

The Sickle Cell Disease Association of America (SCDAA) Medical and Research Advisory Committee (MARAC) believes that progress in sickle cell disease (SCD) is tied to clinical trials and comprehensive care. For this reason, we encourage individuals with SCD to consider participating in research. It’s because thousands of courageous children and adults with sickle cell disease signed up for research that we have improved survival, developed new medicines and found possible cures.

The Sickle Cell Disease Association of America (SCDAA) Medical and Research Advisory Committee (MARAC) shares the following:

Influenza (“flu”) is a contagious viral infection that can cause severe medical problems in anyone. It is worse than a common cold. The problems are potentially bigger for individuals with sickle cell disease. Influenza can trigger sickle cell vaso-occlusive pain or acute chest syndrome. This means that influenza has a high chance of sending you to the hospital and possibly to the intensive care unit with severe breathing problems. If you already have lung problems from asthma or from repeated acute chest syndrome, then influenza is even more likely to cause you to be severely ill.

Researchers at the University of Tennessee Health Science Center (UTHSC) College of Nursing and St. Jude Children’s Research Hospital have received a $100,000 grant to expand an innovative education program for nurses who care for people with sickle cell disease (SCD) – an inherited illness that affects 100,000 people nationwide.

The grant from Global Blood Therapeutics, Inc. (GBT) allows the researchers to increase the impact of the Sickle Cell Boot Camp to Promote Nursing Excellence that was held in June at UTHSC. Funded through an initial $50,000 grant from GBT, the first boot camp brought 15 nurses to the UTHSC campus to learn best practices to treat sickle cell patients. The expanded program will incorporate a train-the-trainer model allowing for expansion of the program.

The nursing education program is a collaboration between the UTHSC College of Nursing, St. Jude, and the International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA).

People with sickle cell anemia are at a significantly higher risk of developing periodontitis, a serious gum disease, a study reported. In turn, periodontitis was associated with elevated levels of inflammation markers in patients and a three times greater chance of more than three painful vaso-occlusive crises (VOCs) each year. These findings highlight the importance of “setting of a strict periodontal screening program for this special patient population and the control/reduction of periodontal inflammation,” its researchers wrote.

The study, “Association between periodontal inflamed surface area and serum acute phase biomarkers in patients with sickle cell anemia,” was published in the journal Archives of Oral Biology. Sickle cell anemia, the most common form of sickle cell disease, and often its most severe form, has been associated with an increased release of inflammatory molecules called cytokines. This cytokine production perpetuates a chronic inflammatory state that can lead to the development of other diseases, including those affecting the gums.

At the 40th American Society of Hematology (ASH) Annual Meeting and Exposition investigators discussed an early hypothesis about Arginine (Arg) therapy as treatment for vaso-occlusive episdes (VOEs) in patients with sickle cell disease (SCD).

Almost 25 years later, Dr. Claudia Morris concluded 2022 by presenting phase 2 data at the 64th ASH Annual Meeting that demonstrated the therapy's benefit, and her original premise. Her team's phase 3 trial evaluating Arg is currently underway.

The primary outcome for the latest data was total parenteral opioid use in milligrams per kilo of IV morphine. Despite the unexpected interruptions of severe pain experienced by this patient population, treatments for acute pain related to sickle cell disease are lacking.