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).

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.

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 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’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 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/

September is National Sickle Cell Awareness Month. The Sickle Cell Disease Association of America invites you to join us for a virtual blood drive to support sickle cell warriors!

Did you know…

That blood transfusions are one of the most critical treatments for sickle cell patients, but less than 10% of Americans donate blood?

That sickle cell patients benefit most from blood transfusions from people of the same race or similar ethnicity, but only five percent of blood donors are of African ancestry?

Join us in recognizing National Sickle Cell Awareness Month and help us make a difference for SCD patients by pledging to donate blood. It takes one hour, and you could save someone’s life. Thank you for your support!

Walking for your warrior. Walking in memory of someone who is no longer here. Walking for a cure. There are countless reasons to Walk for Sickle Cell. We hope you decide to join us as we uplift families, raise awareness, and provide support to hundreds of families statewide. We need your help to make a difference, and we know every step counts. Sickle Cell Association of Texas Marc Thomas Foundation’s virtual walk is a must to join.

Mark your calendars – the Walk for Sickle Cell is back. That’s right – on Saturday, September 3rd, we will be walking to uplift others, raise awareness, and provide support for hundreds of families. You can join us from anywhere – whether that’s your neighborhood, your gym, or your backyard, what matters the most is you joining us in our journey this year.

When:

Saturday, September 3rd, 2022

This event has ended.

We are excited to announce the 2nd annual Miles for Miracles virtual event benefiting the Aflac Cancer and Blood Disorders Center. All you have to do is walk or run one mile a day from September 1–27, for a total of 27 miles. Join us as we honor the families we have served over the past 27 years! 

Since 1995, support from Aflac Inc. has helped make the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta one of the leading pediatric cancer and blood disorders programs in the country. The Aflac family has donated over $160 million to the Aflac Cancer and Blood Disorders Center since the inception of our partnership.

Once you register under your market, employee department, or other teams you will have the opportunity to make your very own fundraising page and raise money for patients at the Aflac Cancer and Blood Disorders Center!

A virtual experience like no other, let's journey together with a WARRIOR WALKING THROUGH THE WARDS ( Houston's historic 1st through 6th Wards) Exploring the rich culture and history of the city of Houston along with facts about sickle cell trait and sickle cell disease you may not have known!  This year, MANY OPTIONS are available to be a part of the movement! Come along; learn something new and be a part of the solution through support.  Let's get to the end of this 21-mile journey (representing the same 21 years it took to get new treatment options)~ We're in this together!

When:

Thu September 1 - Sat December 31, 2022