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ASGCT Advocacy Update
Newborn Screening Advocacy Succeeds in Georgia Earlier this month, Georgia Governor Brian Kemp signed HB 567 [ https://www.legis.ga.gov/legislation/59896 ] into law, which will require the state to consider new federal newborn screening (NBS) recommendations within one year, implement them within two and a half years, and provide appropriate funding for the NBS program. ASGCT supported the bill…
Read MoreNew data for Vertex and CRISPR Therapeutics
Vertex and CRISPR Therapeutics Present New Data in 22 Patients With Greater Than 3 Months Follow-Up Post-Treatment With Investigational CRISPR/Cas9 Gene-Editing Therapy, CTX001™ at European Hematology Association Annual Meeting – Beta thalassemia: All 15 patients were transfusion independent after CTX001 infusion – – Sickle cell disease: All seven patients were free of vaso-occlusive crises after…
Read MorePassing on Sickle Cell to your Children
Passing on Sickle Cell to your Children Warrior parents, can you relate to feeling like this? How do you cope? What helps you get through these feelings about passing on sickle cell? Jourdan Dunn feels as if she passed sickle cell disease on to her son, Riley Dunn. The model-turned-actress recently told The Sunday Times magazine about…
Read MoreMake Happiness a Habit – 5 Ways to help
Happiness isn’t always easy to catch and hold onto. Yes, some relationships can provide deep joy, and material possessions might offer a short-lived thrill, but these sources of happiness are somewhat out of your control. To nurture and sustain feelings of happiness, develop routines you can rely on no matter what else is going on in…
Read MoreA fallen Warrior rises as an Angel
Colin Alexander Ross was born in Mandeville Jamaica in August of 1961. We met in Boston after he immigrated to the United States in 1982 and married in 1987. He had been a successful DJ in Jamaica and won awards for dancing as well. Once he moved to the US, he took an accelerated course…
Read More15th Annual SCD Research & Education Symposium
The 15TH Annual Sickle Cell Disease Research & Educational Symposium & 44TH National Sickle Cell Disease Scientific Meeting May 27 – 30, 2021 Register HERE. Find the full schedule by clicking HERE.
Read MoreDigital Memorial Booklet
Be a part of a digital memorial booklet. Warriors, we have had our hearts broken. We have lost many amazing warrior friends, families, and brothers and sisters-in-blood. We wept, we suffered, we mourned, but we are not defeated. Still we rise. Join us and the entire sickle cell warrior family as we celebrate and honor…
Read MoreAre You at Risk for Multiple Myeloma?
Multiple myeloma is a relatively rare cancer that develops in the bone marrow. As the cancerous plasma cells accumulate in the marrow, they crowd out other healthy blood cells. Unfortunately, the symptoms including bone pain, mental fogginess, excessive thirst may develop slowly over time and don’t usually appear until the disease reaches an advanced stage. In…
Read MoreBlack and Latina Women Focus on Self-Care
Stress due to the COVID-19 pandemic and the disproportionate impact the virus has had on their communities is compelling Black and Latina women who are 50 and older to place a renewed emphasis on inner health, self-care and well-being, according to a new AARP national survey. “Mirror/Mirror: Women’s Reflections on Beauty, Age, and Media,” an AARP survey of…
Read MorePediatric Depression in SC
Depression and Kids with SCA Older age and higher education level showed increased scores. “A new study from Nigeria found that depression in young patients with sickle cell disease (SCD) was linked with increasing age and education level.” There is a new Nigerian study with teens and children who have sickle cell anemia (SCA). The…
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