Patriots' Devin McCourty raises awareness about sickle cell disease

Two-time Super Bowl champion, pro-bowler and all-pro safety are just some of Devin McCourty's on field accomplishments with the New England Patriots, but his work doesn't stop on the field. Devin, along with his twin brother Jason, who plays for the Cleveland Browns, created a campaign to fundraise and raise awareness about sickle cell disease. The campaign, called Tackle Sickle Cell raises money for research for the blood disorder that they watched their Aunt Winnie suffer with for years. McCourty tells Boston 25 News reporter Kerry Kavanaugh this project is one of the most important things he'll do in his career. "Our own aunt had it and we didn't know much about the disease. So, we knew there had to be a whole lot of other people who didn't really know how this affected people," Devin said.
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fox25boston.com
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Quest Diagnostics Launches Genetic Test to Assess Risk for Sickle Cell Anemia, Other Inherited Disorders

Couples who wish to know the risk of passing on a genetic disease such as sickle cell anemia to their children may now do so with QHerit, a new screening test by Quest Diagnostics. The QHerit Pan-Ethnic Expanded Carrier Screen test covers 22 genetic diseases and was produced based on screening guidelines issued in March 2017 by the American College of Gynecology (ACOG). The test determines the likelihood of a couple passing on a heritable disorder to their children and its impact. The test is able to predict the occurrence of diseases such as sickle cell anemia, cystic fibrosis, thalassemia, Joubert Syndrome 2, Tay-Sachs disease, and Fragile X syndrome, among others.
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sicklecellanemianews.com
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sicklecellanemianews.com
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Researchers Identify Genetic Predictors of Sickle Cell Anemia-Related Complications

Patients with sickle cell anemia who do not have alpha-thalassemia and the genetic rs1427407 T variant of the BCL11A gene may be at higher risk for hemolysis (rupture of red blood cells) and stroke, according to the results of studies of three independent groups. These findings were featured in Blood Advances, in the study titled “Associations of α-thalassemia and BCL11A with stroke in Nigerian, United States, and United Kingdom sickle cell anemia cohorts.” “Our goals were to incorporate individual genetic predictors of sickle cell disease severity into a risk profile to better predict which patients are at higher risk for sickle cell-related complications,” Santosh L. Saraf, MD, lead author of the study, said in a news report. Saraf is an assistant professor of medicine in the department of hematology and oncology at the University of Illinois at Chicago.
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sicklecellanemianews.com
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sicklecellanemianews.com
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APS Scientific Summit

The American Pain Society will hold its Annual Scientific Meeting in the form of a Scientific Summit March 4-6, 2018, with a balance of clinical, translational, and basic science research around a central theme: Understanding Pain Mechanisms. The Summit's format allows for a comprehensive, shared meeting experience to fully explore this theme through plenary lectures, focused symposia sessions, interactive and networking sessions, SIG meetings, poster sessions, and exhibits.

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painresearchforum.org
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65th American Society of Hematology (ASH) Annual Meeting & Exposition

The 65th ASH Annual Meeting and Exposition will take place December 9-12, 2023, in San Diego, California, and online. Registration is now open for members, non-members, groups, exhibitors, and media.

Attendees will have the opportunity to register for the in-person meeting in San Diego or one of the virtual registration options. If you choose to participate in person, you will also receive complimentary access to the annual meeting virtual platform through January 1, 2024. Access to the virtual platform will begin on December 6, 2023.

 

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hematology.org
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hematology.org
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The 2020 ASPHO Conference - CANCELED

More than 1,200 pediatric hematology/oncology professionals from around the world attend The American Society of Pediatric Hematology/Oncology (ASPHO) Conference. A flagship meeting for the field, the ASPHO Conference allows attendees to receive high-quality educational content, network with their colleagues, and discover innovative advancements in pediatric hematology/oncology.

Attendees receive superior educational programming from internationally known experts in the field of pediatric hematology/oncology. The educational programming includes a dynamic variety of symposia, workshops, plenary sessions, and poster sessions.

 

Please stay tuned for further updates.

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‘Every time it’s a battle’: In excruciating pain, sickle cell patients are shunted aside

Amy Mason had toughed it out for hours one day this past July, trying warm soaks and heating pads and deep breathing to soothe pain that felt like her bones were being sawed with a rusty blade. She knew this was a life-threatening emergency of sickle cell disease, in which her misshapen red blood cells were getting stuck in her blood vessels like tree limbs in a storm sewer. But she delayed going to the emergency room; previous visits hadn’t gone well. Just before midnight, Mason, 34, finally had her boyfriend drive her to a Mobile, Ala., hospital. She told the triage nurse that she was having one of the worst sickle cell crises of her life and that she was off the far end of the 1-to-10 pain scale. She was told to wait.
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statnews.com
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statnews.com
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Prodigy’s death shines light on slow progress against sickle cell disease

The death of the rap artist Prodigy (Albert Johnson, half of the duo Mobb Deep) at only 42 this week, after a lifetime of suffering from sickle cell disease, was a reminder of the devastating cost of the sometimes fatal genetic disorder — and of the failure to cure it. It has been 61 years since the discovery of the mutation responsible for sickle cell, which affects about 100,000 people in the U.S., and 30 years since scientists found a compensatory mutation — one that keeps people from developing sickle cell despite inheriting the mutant genes.  
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pbs.org
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The National Sickle Cell Advocate Network (NSCAN)

NSCAN, with the assistance of an Expert Advisory Committee, will develop and implement a patient-centered training curriculum and mentor program in an effort to: Receive updates from clinicians and patients regarding therapeutic options for SCD Determine/develop relevant patient outcome measures for SCD Create partnerships with academic institutions, industry, and foundations to advance PCOR/CER projects Increase SCD patient partnering with clinicians on PCOR/CER projects. Upon completion of a developed curriculum and implemented program, 25 trained patient/parent facilitators will expand the network in their respective areas/states to 50 additional network participants/facilitators, an effort to educate over 625 advocates. Project Collaborators: SCDAA has enlisted several collaborators to ensure the success of this project. Such collaborators include: The SCDAA Medical Advisory Council, 42 community-based member organizations, The New Jersey Sickle Cell Association, Inc., and Leidos, Inc.
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pcori.org
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pcori.org
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Global Blood Therapeutics Receives EMA PRIME Designation for GBT440 for the Treatment of Sickle Cell Disease (SCD)

GBT440 is First Potential Treatment for SCD To Be Accepted for PRIME. PRIME Designation Allows for Frequent and Early Interactions with the Agency Aimed at Assisting Accelerated Evaluation and ApprovalF. Global Blood Therapeutics, Inc. (GBT) (NASDAQ:GBT) today announced that the European Medicines Agency (EMA) has determined that GBT440 for the treatment of sickle cell disease is eligible for its Priority Medicines (PRIME) program. The PRIME program is a new regulatory mechanism that provides for early and proactive EMA support to medicine developers to help patients benefit as early as possible from innovative new products that have demonstrated the potential to significantly address an unmet medical need.
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globenewswire.com
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globenewswire.com
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