Sickle Cell News for June 2018
To join or leave the listserv, visit https://scinfo.org/newsletter/ News Sickle Cell Patients Suffer As Disparities In Care, Research Persist http://www.courant.com/news/connecticut/hc-sickle-cell-20180511-story.html When 9-year-old Jeremy Brown is in pain, it feels like he is being stabbed. The pain experienced by Deborah Oliver, 40, is like 100 simultaneous charley horses. Brown, of Bridgeport, and Oliver, of […]
Sickle Cell News for May 2018
To join or leave the listserv, visit https://scinfo.org/newsletter/ News Doctors at the University of Illinois Hospital have cured seven adult patients of sickle cell disease, an inherited blood disorder primarily affecting the black community, using stem cells from donors previously thought to be incompatible, thanks to a new transplant treatment protocol. The doctors […]
Sickle Cell News for April 2018
To join or leave the listserv, visit https://scinfo.org/newsletter/ News New Full Length Feature Film about Friendship and Life with Sickle Cell Disease Spilled Milk A FILM BY FRIENDS ABOUT FRIENDS Spilled Milk is a film about two lifelong friends – a white guy from Utah and a black guy from New Jersey. Omar is […]
Sickle Cell News for March 2018
To join or leave the listserv, visit https://scinfo.org/newsletter/ News Terrific Teens (& Fabulous Families) – stories of resilience, love and creativity when living with sickle cell disease By Claudia Gore Storyteller, story-bringer, doctor, allergist, paediatrician, patient Imagine an unbearable itch for 24 hours a day and couple this with having to watch what you […]
Sickle Cell News for January 2018
To join or leave the listserv, visit https://scinfo.org/newsletter/ News Stopping the Sickle Cycle – Where are we? By Allan Platt PA-C, MMSc In 1977, the published life expectancy for a sickle cell disease patient was mid teens. Forty years later, in 2017, life expectancy in the US has grown with identification of patients with […]
Sickle Cell News for December
To join or leave the listserv, visit https://scinfo.org/newsletter/ News Increasing hydroxyurea dose helps to keep young sickle cell patients out of the hospital https://www.stjude.org/media-resources/news-releases/2017-medicine-science-news/higher-hydroxyurea-dose-improves-outcomes-for-young-sickle-cell-patients.html St. Jude Children’s Research Hospital investigators have shown that using the drug hydroxyurea to boost average fetal hemoglobin levels above 20 percent in children and teenagers with sickle cell anemia […]
Sickle Cell News for November
To join or leave the listserv, visit https://scinfo.org/newsletter/ News Hydroxyurea appears safe for African children with sickle cell anemia https://www.healio.com/hematology-oncology/hematology/news/in-the-journals/%7B7d880f0c-863c-4de1-a5c4-5e35cd906c0e%7D/hydroxyurea-appears-safe-for-african-children-with-sickle-cell-anemia Hydroxyurea did not increase the risk for malaria infection in children with sickle cell anemia who live in malaria-endemic regions of Uganda, according to the results of a randomized, double-blind clinical trial published […]
Sickle Cell News for October
To join or leave the listserv, visit https://scinfo.org/newsletter/ News Making Advances Against Sickle Cell Disease FDA – https://blogs.fda.gov/fdavoice/index.php/2017/09/making-advances-against-sickle-cell-disease/ As September — Sickle Cell Awareness Month — comes to a close, we take this opportunity to reflect on how much must be done to help patients in need and educate others on sickle cell disease — and […]
Sickle Cell News for September
To join or leave the listserv, visit https://scinfo.org/newsletter/ News Sickle-Cell Patients See Hope in CRISPR The disease may be among the first to be treated with the novel gene-editing tool. https://www.technologyreview.com/s/608641/sickle-cell-patients-see-hope-in-crispr/ Hertz Nazaire is a soft-spoken artist who likes to paint in bright colors, with subjects like rainbow palm leaves and dancing women […]
Sickle Cell News for August
To join or leave the listserv, visit https://scinfo.org/newsletter/ News ASH to Develop Clinical Guidelines to Improve Care for People with Sickle Cell Disease the American Society of Hematology (ASH) is working on several projects to conquer sickle cell disease (SCD) worldwide. Among them, the Society has launched an effort to develop clinical practice […]
Sickle Cell News for July 2017
To join or leave the listserv, visit https://scinfo.org/newsletter/ News FDA approves new treatment for sickle cell disease – First approval for this rare blood disorder in nearly 20 years https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm566084.htm The U.S. Food and Drug Administration today approved Endari (L-glutamine oral powder) for patients age five years and older with sickle cell disease […]
Sickle Cell News for June 2017
News FDA Advisory Committee Gives Thumbs Up for L-glutamine for Sickle Cell Disease http://www.raredr.com/news/fda-advisory-glutamine The U.S. Food and Drug Administration’s (FDA) Oncologic Drugs Advisory Committee voted 10-to-3 that the overall Benefit-Risk profile of Endari (L-glutamine) for treating patients with sickle cell disease is favorable. The FDA is set to make its final decision on the drug […]
Sickle Cell Newsletter for May 2017
News How Yogurt Science Could Lead To A Cure For Sickle Cell Anemia http://www.wbur.org/commonhealth/2017/04/28/yogurt-sickle-cell-anemia The discovery of CRISPR and gene editing was not made by a geneticist or a stem cell biologist. CRISPR was discovered by a bunch of microbiologists, scientists who study bacteria and viruses. In fact, much of the foundational work in CRISPR […]
Sickle Cell Newsletter for April 2017
News First systemic evidence for safety of tPA in stroke patients with sickle cell disease https://medicalxpress.com/news/2017-04-evidence-safety-tpa-patients-sickle.html Adult patients with sickle cell disease (SCD) who experience a stroke caused by a clot (i.e., ischemic strokes or IS) can be treated safely with tissue plasminogen activator (tPA) if they qualify, report investigators at the Medical University of […]
Sickle Cell Newsletter for March 2017
News First Successful Gene Therapy in a Patient with Sickle Cell Disease http://www.nejm.org/doi/full/10.1056/NEJMoa1609677?query=featured_home N Engl J Med 2017; 376:848-855 March 2, 2017 Sickle cell disease results from a homozygous missense mutation in the β-globin gene that causes polymerization of hemoglobin S. Gene therapy for patients with this disorder is complicated by the complex cellular […]
Sickle Cell Newsletter for February 2017
News Suspicions in the ER: a consequence of the opioid epidemic http://www.newsworks.org/index.php/local/item/100321-suspicions-in-the-er-an-unexpected-consequence-of-the-opioid-epidemic Diabetes drug metformin can help fight sickle cell disease, study shows https://knowridge.com/2017/01/diabetes-drug-metformin-can-help-fight-sickle-cell-disease-study-shows/ Researchers at Baylor College of Medicine and Texas Children’s Cancer and Hematology Centers have discovered a gene, FOXO3, involved in controlling fetal hemoglobin production. In addition, the researchers were able to […]
Sickle Cell Newsletter for December 2016
News Crizanlizumab for the Prevention of Pain Crises in Sickle Cell Disease http://www.nejm.org/doi/full/10.1056/NEJMoa1611770#t=article The up-regulation of P-selectin in endothelial cells and platelets contributes to the cell–cell interactions that are involved in the pathogenesis of vaso-occlusion and sickle cell–related pain crises. The safety and efficacy of crizanlizumab, an antibody against the adhesion molecule P-selectin, […]
Sickle Cell Newsletter for October 2016
News Gene therapy for sickle cell disease passes key preclinical test- Decades-old discovery about fetal hemoglobin is on track for clinical trial in the coming year http://news.harvard.edu/gazette/story/2016/09/gene-therapy-for-sickle-cell-disease-passes-key-preclinical-test/ A precision-engineered gene therapy virus, inserted into blood stem cells that are then transplanted, markedly reduced sickle-induced red-cell damage in mice with sickle cell disease, researchers […]
Sickle Cell Newsletter for September 2016
News Landmark Article in New England Journal of Medicine Health experts have long believed that sickle cell gene variants, which occur in about 1 in 13 African-Americans, increase the risk of premature death, even when people carry only a single copy of the variant. But health records of nearly 50,000 active-duty U.S. Army […]
Sickle Cell Newsletter for July 2016
News Up to $25 million in Funding for Management of Care Transitions for Emerging Adults with Sickle Cell Disease Thank you again for participating in the “Management of Sickle Cell Disease” workshop hosted by the Patient-Centered Outcomes Research Institute (PCORI) on March 7, 2016. Based on the results of the meeting, we would like […]
Sickle Cell Newsletter for June 2016
News Sickle Cell in Focus Conference June 2 & 3, 2016 Natcher Conference Center (Building 45) National Institutes of Health 45 Center Drive Bethesda, MD 20892 Sickle Cell in Focus (SCiF) is an annual two-day intensive and educational conference co-hosted by the National Heart, Lung and Blood Institutes (NHLBI) in Washington, DC and the South […]
Sickle Cell Newsletter for April 2016
News Scientists uncover new way to grow rare life-saving blood stem cells Enhanced numbers of stem cells for transplantation possible https://www.sciencedaily.com/releases/2016/04/160427150323.htm A protein called Musashi-2 regulates the function and development of important blood stem cells. This knowledge provides new strategies that can be used to control the growth of these cells — cells that can […]
Sickle Cell Newsletter for March 2016
Launch of the New SCInfo.org Website The Sickle Cell Information Center website, www.scinfo.org began in 1997, shortly after internet communication took off. Founded by James R. Eckman, MD, Professor of Hematology and Medical Oncology at the Winship Cancer Institute and Professor of Medicine and Adjunct Professor of Pediatrics in Medical Genetics at Emory University School […]
Sickle Cell Newsletter for February 2016
Antiplatelet Drug Doesn’t Reduce Pain of Sickle Cell Anemia Children and adolescents with sickle cell anemia who received the adenosine diphosphate–directed antiplatelet agent prasugrel had no significant reduction in painful vasoocclusive crises compared with those who received placebo, found a trial conducted in 13 countries (Heeney MM et al. N Engl J Med. doi:10.1056/NEJMoa1512021 [published […]
Sickle Cell Newsletter for January 2016
UAB Adult Sickle Cell Clinic receives $1 million from Sickle Cell Foundation There has been a dramatic change in sickle cell disease treatment outcomes in our lifetimes. In the early 1970s, being diagnosed with this genetic disorder was more like receiving a death sentence. Children were not expected to live past the age of 16. […]
Sickle Cell Newsletter for December 2015
Gene Therapy is on the Way “Bubble baby” stem cell treatment looks like a cure and paves way for Sickle Cell Disease Treatment The first therapeutics based on genome-editing tools will treat diseases caused by single genes, but many other factors dictate what is currently possible. Data Back Transplant as Cure for Sickle Cell More […]
Sickle Cell Newsletter for November 2015
Sickle cell disease cure in sights of UAB Stem Cell Institute See more at: http://alabamanewscenter.com/2015/11/13/sickle-cell-disease-cure-in-sights-of-uab-stem-cell-institute/#sthash.UcB4ug9H.dpuf Chevron Boosts Its Support Of The Angola Sickle Cell Initiative https://www.polymerupdate.com/press-releases/press-release-details.aspx?id=10275 Chevron Corp. is continuing its support of the Angola Sickle Cell Initiative by committing an additional $5 million endowment over the course of five years. The oil and gas […]