“People with sickle cell disease possess an incredibly rich and diverse array of creative abilities, often used to express the physical and emotional burden of living with this complex and devastating disease,” said Beverley Francis-Gibson, M.A., president and CEO of the SCDAA. “Celebrating these voices is critical as we work to overcome the legacy of stigma and misinformation that have a direct impact on health outcomes. We are proud to partner with GBT to shine the light on the challenges that SCD warriors face with strength and resilience.”
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. To learn more about the contest details and how to submit a video, please email patientevents@sicklecellspeaks.info or visit www.facebook.com/SickleCellSpeaks. Participants must sign up by May 24, 2021, and be U.S. residents. For each eligible submission received, GBT will donate $100 to the SCDAA, up to a total donation of$5,000. The contest winner will be featured in a GBT event at the SCDAA Annual Convention in October 2021. “Shine the Light on Sickle Cell” is a collaboration between SiNERGe and SCDAA.
“GBT is proud to partner with SCDAA to recognize the many inspiring voices within the sickle cell community who have rallied for progress in the face of tremendous health and societal challenges over the last year,” said Jung E. Choi, chief business and strategy officer, and head of patient advocacy and government affairs at GBT. “People with SCD suffer from a terrible, life-threatening disease that is made worse by being subjected to racial bias. We reiterate our commitment to shining a brighter light on the inequities these patients encounter and will continue working with all our partners to ensure access to the high-quality care patients deserve.”
Performances by the spoken word contest winner and finalists will be featured in a virtual event on Friday, June 18, 2021, at 4:00 p.m. PT and Saturday, June 19, 2021, at 12:00 p.m. PT on the Sickle Cell Speaks Facebook and Instagram pages. The event will be hosted and feature performances by three SCD advocates who are passionate about using spoken word to educate and inspire change:
- Charly Richard, musician and writer
- DeMitrious Wyant, musician and entrepreneur
- Candis St. John, nurse and poet
About Sickle Cell Disease
Sickle cell disease (SCD) affects an estimated 100,000 people in the United States,1 an estimated 52,000 people inEurope,2 and millions of people throughout the world, particularly among those whose ancestors are from sub-Saharan Africa.1 It also affects people of Hispanic, South Asian, Southern European, and Middle Eastern ancestry.1 SCD is a lifelong inherited blood disorder that impacts hemoglobin, a protein carried by red blood cells that delivers oxygen to tissues and organs throughout the body.3 Due to a genetic mutation, people with SCD form abnormal hemoglobin known as sickle hemoglobin. Through a process called hemoglobin polymerization, red blood cells become sickled – deoxygenated, crescent-shaped, and rigid.3-5 The sickling process causes hemolytic anemia (low hemoglobin due to red blood cell destruction) and blockages in capillaries and small blood vessels, which impede the flow of blood and oxygen throughout the body. The diminished oxygen delivery to tissues and organs can lead to life-threatening complications, including stroke and irreversible organ damage.4-7
About SCDAA
Sickle Cell Disease Association of America(SCDAA) advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 50 member organizations support sickle cell research, public and professional health education and patient and community services. Visitwww.sicklecelldisease.org.
About Global Blood Therapeutics
Global Blood Therapeutics(GBT) is a biopharmaceutical company dedicated to the discovery, development, and delivery of life-changing treatments that provide hope to underserved patient communities. Founded in 2011, GBT is delivering on its goal to transform the treatment and care of sickle cell disease (SCD), a lifelong, devastating inherited blood disorder. The company has introduced Oxbryta®(voxelotor), the first FDA-approved treatment that directly inhibits sickle hemoglobin polymerization, the root cause of red blood cell sickling in SCD. GBT is also advancing its pipeline program in SCD with inclacumab, a P-selectin inhibitor in development to address pain crises associated with the disease, and GBT021601 (GBT601), the company’s next-generation hemoglobin S polymerization inhibitor. In addition, GBT’s drug discovery teams are working on new targets to develop the next wave of treatments for SCD. To learn more, please visit www.gbt.com and follow the company on Twitter @GBT_news.
References
- Centers for Disease Control and Prevention website. Sickle Cell Disease (SCD). https://www.cdc.gov/ncbddd/sicklecell/data.html. Accessed June 3, 2019.
- European Medicines Agency.https://www.ema.europa.eu/en/medicines/human/orphan-designations/eu3182125. Accessed June 12, 2020.
- National Heart, Lung, and Blood Institute website. Sickle Cell Disease. https://www.nhlbi.nih.gov/health-topics/sickle-cell-disease. Accessed August 5, 2019.
- Rees DC, et al. Lancet. 2010;376(9757):2018-2031.
- Kato GJ, et al. Nat Rev Dis Primers. 2018;4:18010.
- Kato GJ, et al. J Clin Invest. 2017;127(3):750-760.
- Caboot JB, et al. Paediatr Respir Rev. 2014;15(1):17-23.
GBT Contact Information:
Steven Immergut
650-410-3258
simmergut@gbt.com
SCDAA Contact Information:
Emma Day
eday@sicklecelldisease.org
Kyri Jacobs
kjacobs@sicklecelldisease.org
