Awareness Month Targets Research, Education – and Blood Donations
Since Sept. 21, 1983, when then-President Ronald Reagan’s proclamation created National Sickle Cell Anemia Awareness Month, advocates, patients, family members, doctors, and others impacted by sickle cell disease (SCD) have been pushing for increased research and awareness, and better treatments.
This year will be no different, as virtual, in-person, and international events aim to increase blood donations, educate the public about the disorder, and help those affected navigate treatment options.
But new this September will be a social media initiative called Twitter Parties. Anyone interested can use the hashtag #SickleCellMatters at specific times during the month to generate discussion and further awareness of the inherited disease.
Sickle cell disease or SCD affects about 100,000 Americans, occurring in one of every 365 Black births, according to the Centers for Disease Control and Prevention.
At a Sept. 15 SCD congressional briefing, U.S. lawmakers will have an opportunity to learn more about the disease and innovative medicines coming through the pipeline, as well as determine where federal funding for sickle cell efforts should go.
The Sickle Cell Disease Association of America (SCDAA) encourages people to share its awareness month flyer and Facts and Stats sheet, which showcases the disease’s high incidence rate in Black and Latino populations, its common symptoms, and information on ongoing research to better treat it.
“Individuals and organizations can join our efforts to bring attention to sickle cell disease by engaging elected officials for proclamations, hosting awareness events, distributing educational information to dispel the myths about sickle cell disease, and lighting public spaces, buildings and landmarks red!” states SCDAA’s webpage for the awareness month.
A SickleTini “Swing into Fall” virtual happy hour fundraiser will kick off the month’s events on Sept. 1. Held from 5:30–6:30 p.m. EST, the happy hour will feature music by Supa Scotty the DJ and a discussion with guest speaker Carolyn Rowley, PhD. The founder and executive director of the Cayenne Wellness Center, a nonprofit that educates families about SCD, Rowley will teach participants about nutrition, psychology, and wellness.
In another effort to increase discussion of SCD on social media, SCDAA has created the new Twitter Parties initiative. Interested participants can use the hashtag and organization’s theme for the month between 12:30 and 1:30 p.m. EST on Sept. 9, 23, and 30 to drive discussions on SCD.
The SCDAA also will present the 10th Annual Sickle Cell Disease Therapeutics Conference at 9 a.m. EST on Sept. 15. This forum is focused on the latest advancements in SCD research and treatment options.
To raise awareness on the local level, the organization’s chapters around the U.S. have created their own events to raise money for care and research, and to bring greater attention to SCD. The Sickle Cell Disease Association of Illinois, for example, will host its 47th Annual Walk/Jog/Bike-A-Thon, still virtual this year. Individuals can register online with a donation of $30 for people 21 and older and $15 for those 20 and younger. All participants will receive an event tank top and are encouraged to spread photos of the event across social media.
Throughout September, Twin Cities restaurants, shops, and businesses will donate a portion of their profits to Children’s Minnesota hospital to support the cancer and blood disorders program there. In addition, the Ann and Robert H. Lurie Children’s Hospital of Chicago, which has an SCD program, is asking people to start fundraisers, make donations, and raise awareness for SCD.
Although National SCD Awareness Month is a U.S. initiative, international organizations also are getting involved in educating people about SCD and raising money for an ultimate cure.
In the U.K., Gideon’s Treasure Foundation Charity Gala Dinner, in partnership with DUMEBI Fashion and the Sickle Cell Society, is making use of the notoriety of London Fashion Week to help support people with SCD. Event tickets range from £150 to £1,000 ($206 to $1,376). Participants will be treated to a three-course gourmet meal, a live performance from recording artist Justina, and speeches from Anne Welsh, an author, entrepreneur, and SCD patient, and Michele Salter, vice chair and treasurer at the Sickle Cell Society.
“We encourage everyone to be a part of this national effort to increase awareness about sickle cell disease and sickle cell trait during the month of September,” the SCDAA says, noting its hashtags this year are #SickleCellMatters2021, #SickleCellAwarenessMonth, #SCDAA2021AwarenessMonth, and #SCDSCTmatters.