If you are a researcher, community-based member organization, physician, nurse, social worker or someone working on behalf of people living with sickle cell disease and their families, Sickle Cell Disease Association of America, Inc. would like to highlight your work at the 51st Annual National Convention October 11-14, 2023, Arlington, VA.

To be eligible, abstracts must meet guidelines and be submitted by July 17, 2023. Late submissions will not be accepted. Abstracts will be reviewed and ranked by the national abstract review committee. Abstract finalists will be judged during oral presentations and presented at the gala. “Best Abstract” in each category will be announced at the conclusion of the SCDAA 51st Annual National Convention. Special awards for the best student and trainee abstracts will also be given.

More information to come!

In recognition of World Sickle Cell Day, which falls on June 19, 2021, Global Blood Therapeutics, Inc. (GBT) and the Sickle Cell Disease Association of America, Inc. (SCDAA) launched “Lift Every Voice to Shine the Light on Sickle Cell” – a contest that will feature original spoken word pieces to raise awareness of sickle cell disease (SCD). The contest, which aims to elevate the voices and experiences of people living with SCD and their caregivers, is presented by Sickle Cell Speaks, GBT’s SCD education campaign that highlights authentic stories of those living with SCD to dispel misconceptions about the disease.

Spoken word poetry is an art form rooted in traditions of storytelling to convey compelling messages and personal experiences. People living with SCD and their caregivers are invited to sign up to submit videos of themselves performing original spoken word pieces about their experience with SCD. Participants must sign up by May 24, 2021, and be U.S. residents.

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International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) is creating a memorial digital booklet for World Sickle Cell Day. If you want to honor a sickle cell warrior who has passed, send a photo, poem, or memory to 610designsandco@gmail.com by June 1, 2021.

Roland B. Scott Symposium on Sickle Cell Disease

"Glimmers of Hope"

May 19, 2021

Virtual Event, 10am to 4pm EDT

Join the conversation about new treatments for sickle cell disease and panel discussions on stigma, sexuality, aging, and insurance. Join through the web and the Whova app that can be downloaded after registration for a real interactive experience. 

Speakers include Greg Kato, MD; Shawn Bediako, PhD; Lakshmanan Krishnamurti, MD; and Ahmar U. Zaidi, MD.

Registration is free. Please DONATE at least $20 to keep this event free for those who need it.

This event has ended. Next event will be in May 2023.

Nurses’ week takes place between Thursday, May 6 – Wednesday, May 12, 2022. May 12 is significant as it marks the revered Florence Nightingale’s birthday. It takes place annually and this is going to mark the 202nd year of celebrating Nurses’ Week.

Nurses have sacrificed so much for the community. It’s only fitting that there’s a week dedicated to giving back to them. Accordingly, in this blog, we will take a look at:

• What is Nurses’ Week?
• What can you do to celebrate Nurses’ Week?
• The history of Nurses’ Week

What Is Nurses’ Week?

Nurses’ week is an annual celebration of nurses worldwide for the work they do for others. The week allows people the chance to acknowledge the nurses in their lives. It also provides an opportunity to thank nurses within the industry as a whole for the work they’ve done.

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Friday, April 23, 2021
8:30am – 12:30pm EDT
Live on Facebook
https://www.facebook.com/MartinCenterSCI/

This half-day Sickle Cell Disease conference will feature educational sessions for healthcare providers, patients/families, and social services providers. Local and internationally known experts will present important, contemporary information that will broaden current thinking while covering treatment protocols that can improve the health and longevity of youth affected by Sickle Cell Disease. The sessions are open to the public via an Internet based webinar format. All attendees will be provided with information about available resources and current trends in the field.

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Sickle Cell Disease Association of America, Inc. (SCDAA) will host its 2021 Annual Advocacy Day event on April 20-21 from 4-5 p.m. Eastern Time.

In response to COVID-19, Advocacy Day will be held virtually this year.

Register for Day 1 – April 20

Register for Day 2 – April 21

Advocacy Day is an opportunity for patients and caregivers affected by sickle cell disease to learn how to advocate for issues that are important to them. Participants will learn about the key legislative issues that are important to individuals living with SCD and their families, including promoting stable funding for research, better healthcare access and increased education and awareness for the sickle cell community throughout the country.

SCDAA invites individuals representing their 53 member organizations and affiliates from 29 states to participate in this virtual advocacy training and raise awareness of sickle cell disease.

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In response to Graphite Bio’s investigational new drug (IND) application for its gene editing therapy, GPH101, the FDA will allow the pharmaceutical company to initiate a phase I/II trial in patients with sickle cell disease (SCD).

Aimed at curing SCD by targeting the gene mutation that causes damaged and sickled red blood cells, GPH101 uses CRISPR technology to cut out this mutation in the beta-globin gene and paste in the wild-type DNA sequence. The CEDAR trial will evaluate the safety, preliminary efficacy, and pharmacodynamics of GPH101 in adult and adolescent patients with severe SCD. “We are eager to initiate enrollment for the CEDAR clinical trial in early 2021, which will be a historic milestone as the first experimental treatment designed to correct the mutation that is the underlying cause of sickle cell disease,” said Graphite Bio CEO Josh Lehrer, MPhil, MD.

The last thing a lot of people want to do these days is get on a plane. But even a pandemic would not stop Victoria Gray. She jumped at the chance to head to the airport this summer.

"It was one of those things I was waiting to get a chance to do," says Gray.

She had never flown before because she was born with sickle cell disease. She feared the altitude change might trigger one of the worst complications of the devastating genetic disease — a sudden attack of excruciating pain.

But Gray is the first person in the United States to be successfully treated for a genetic disorder with the help of CRISPR, a revolutionary gene-editing technique that makes it much easier to make very precise changes in DNA.

News is evolving rapidly about COVID-19 and COVID-19 vaccines. Early results from the COVID-19 vaccine trials are very promising, although the true benefits and risks will not be known until a larger number of people receive the vaccine.

The Centers for Disease Control and Prevention (CDC) lists sickle cell disease (SCD) as one of the populations vulnerable to severe COVID-19. Sickle cell disease raises the risk for serious problems with COVID-19, especially when compared to the same age in the general population.