The Red Ribbon Gala and Scholarship Awards recognize those who have been strong advocates in the fight against Sickle Cell Disease and the presentation of scholarship awards to two deserving students who are living with Sickle Cell Disease and are currently in high school or attending a college of their choice.

Date:
June 11, 2022

 

This event has ended.

 

UI Health's Sickle Cell Support Group meets the fourth Thursday of the month. The meetings serve as a venue for learning, sharing, and supporting. Most meetings feature a guest speaker and presentation on a topic of interest. All meetings provide an opportunity for discussion and sharing of experiences.

Location:
University of Illinois Hospital
1740 W. Taylor St.
Hospital Conference Room, 1130

When:
Fourth Thursday of the Month (see below for changes and detailed schedule) 6 pm – 8 pm

 

The Sickle Cell Disease Association of America, Inc. (SCDAA) is proud to announce Pennsylvania native Kiarra Roseburgh as SCDAA’s National Child Ambassador.

The SCDAA poster child tradition started in 1976 as an opportunity to elect goodwill ambassadors who would serve as emissaries and assist in public education campaigns. A nationwide search takes place biennially to find the next child who will give voice to millions of children who suffer from sickle cell disease (SCD).

The study looked at Seidman's BEATS (Build, Educate, Advance, Transition in Sickle cell disease) music therapy program, developed by Rodgers-Melnick. BEATS focuses on young adults ages 18-35 who have transitioned from pediatric care at Rainbow Babies and Children's Hospital to an adult care program at Seidman.

To help young adults with their transition to adult care, doctors at Seidman developed the "Bridge Clinic," a care team that includes a hematologist, nurses and social worker, as well as one-hour BEATS music therapy sessions that Rodgers-Melnick leads.

Each week, BEATS participants create a different song about how the disease affects the body, what to do if they develop a fever or pneumonia, pain management techniques and other topics. The program currently has 50 participants.

The Doris Duke Charitable Foundation has announced grants totaling $6 million in support of seven research projects addressing the causes of sickle cell disease. Sickle cell disease, the most common inherited blood disorder in the United States, affects approximately a hundred thousand Americans. Patients with sickle cell disease carry dysfunctional red blood cells that alter regular blood flow, which translates into pain, poor organ oxygenation and organ damage, and a life span of only about forty years. The first grants awarded through DDCF's Sickle Cell Disease/Advancing Cures awards competition will support projects designed to develop disease-modifying approaches to sickle cell disease and translate them into clinically feasible therapies. By restoring hemoglobin function, researchers aim to remove patients' need to manage the disease's acute, devastating, and lifelong symptoms, ultimately increasing their life expectancy.

Sickle-cell disease is one of the most common genetic disorders, affecting millions of people around the world. It’s caused by a mutation in a gene known as HBB, which makes hemoglobin, a protein that transports oxygen throughout the body. Blood cells with healthy hemoglobin are red and disc-shaped. Cells with abnormal hemoglobin are shaped like sickles used to cut wheat, the characteristic that gives the disease its name. CRISPR Therapeutics is one of a handful of gene-editing startups pursuing new treatments for sickle-cell. The company's approach involves isolating stem cells from samples of patients’ blood. Scientists would use CRISPR to activate a genetic switch that would raise the levels of a fetal form of hemoglobin in red blood cells, turning them healthy. This fetal hemoglobin effectively counteracts the effects of the sickle mutation. The modified cells would then be infused back into the patients.

For the last two decades, they’ve had the option of artificially fertilizing embryos and selecting only those that lack the sickle cell trait. Now a new possibility is on the horizon: They may soon be able to edit the offending gene right out of their own sperm, eggs or embryos, erasing it from their bloodline forever. The technology that will allow this is called Crispr-Cas9. It’s relatively cheap and it permits scientists to change DNA with an ease and precision that until now has been impossible. The promise is that it will transform medicine by vanquishing previously incurable diseases. The method is probably at least a few years away from being applied in clinical settings. Still, some are already worried that, when it comes to improving our own genome, we don’t yet know enough about how genes work to wield this power without unintended consequences.

The National Health Service's blood donation programme, NHS Blood and Transplant, needs more black donors and they aren't shy to say so. But the service has been getting a lot of flak recently for singling out one racial group. In a now-viral thread, @GiveBloodNHS made it clear that asking black people to donate isn't about racism or racial profiling; it's about making sure they have enough blood to treat the black community. Now, that might sound wrong since we're often told that underneath our skin everyone is the same, but that's a vast oversimplification, according to the NHS. Humans don't all have the same blood regardless of race, and black people are more likely to have a specific type of blood that's good for treating sickle cell anemia, a disease that affects mostly the black community.

Santonio Holmes, right, and Roosevelt Nix, left, were among the many Steelers and other celebrities at Holmes’ Strikes Against Sickle Cell Bowlathon, Oct. 10 at AMF Noble Manor Lanes on the West End. Holmes’ son, T.J., was diagnosed with Sickle Cell disease at birth.  

An independent review board has found Global Blood Therapeutics’ sickle cell disease treatment voxelotor safe, and recommended that its Phase 3 clinical trial continue. The hallmark of sickle cell disease is damage to a red blood cell protein called hemoglobin that carries oxygen to organs and tissue. The damage causes the cells to become shaped like sickles rather than having a normal disc shape. The sickling interferes with hemoglobin’s ability to deliver oxygen to tissue. Global Blood designed voxelotor to increase sickle-shaped hemoglobin’s ability to carry oxygen. The primary objective of the 24-week, Phase 3 HOPE trial (NCT03036813) is to see whether voxelotor does increase sickled hemoglobin’s ability to transport oxygen. Patients have been divided into two groups. One is receiving 900 mg of the therapy, and the other 1,500 mg.