#StickItToSickleCell Raising Awareness for Sickle Cell Anemia

Importance

Sickle Cell Disease (SCD) is a genetic blood disorder that affects approximately 100,000 Americans and while it is especially prevalent in the African American community, it affects all ethnicities. The disease causes red blood cells, which carry oxygen throughout the body, to take on a sickled shape which can then get clotted in blood vessels. This results in a lack of blood flow to some tissue which can eventually become damaged and causes severe pain to the person suffering from the disease. Presently, the life expectancy of an individual with SCD is 48 years, which is a significant increase since the 1960s when the average life span of a SCD patient was around 20 years. However, recent case studies have shown individuals with SCD living up to 86 years. While no cure for SCD has been discovered, blood transfusion and various medications can help to alleviate its symptoms. Therefore, the SCD community could greatly benefit from more research into lengthening the life expectancy of those with SCD as well as working toward finding a permanent cure for the disease.

Whereas SCD is the presence of two defective genes, Sickle Cell Trait (SCT) is the presence of a single defective gene and does not cause the same symptoms of SCD. Nearly 2 million people in the US and over 100 million people worldwide possess the Sickle Cell Trait. Since SCD is genetically inherited, if both parents possess the SCT, there is a 25% chance that their child will be born with SCD. Additionally, when exposed to extreme conditions such as high intensity exercise or high and low altitudes where there is a decrease in oxygen levels, individuals with SCT can experience symptoms of SCD. Therefore, awareness of SCT is essential to educate individuals about and help to prevent the spread of SCD.

Goals

  • To raise awareness for Sickle Cell Anemia and Sickle Cell Trait by increasing the visibility of the disease on social media.
  • To increase the number of blood and bone marrow donations to patients suffering from Sickle Cell Disease.
  • To raise money for Sickle Cell Disease research performed by the National Heart, Lung, and Blood Institute through a nationwide Walk to End Sickle Cell Disease.

Audience

While the intention of this campaign is to spread global awareness of SCD and SCT through social media platforms, the specific audience of this campaign will be targeted toward college aged students. This is because young adults who wish to procreate should be aware of the risks of mating when SCT and SCD are involved. However, this plan is intended to be utilized by other organizations across the country and across the globe who also wish to spread awareness about SCD and work toward finding a permanent cure to the disease. It is the hope of this campaign that various campuses and cities will participate in their own Walks to End Sickle Cell Anemia as well as their own Bone Marrow and Blood Drives to localize awareness for SCD while simultaneously engaging in a universal conversation over Facebook and Twitter.

Plan

Twitter

Sample Tweets:

Infographic:

This and similar infographics will be shared on Twitter and Facebook so as to educate and help bring awareness to the realities of SCD and SCT.

Facebook

Posts:

Testimonials:

Similar testimonial videos will be created to share the personal experiences of those living with SCD. These videos will be published on the #StickItToSickleCell Facebook page and will be encouraged to be shared with the hashtag #StickItToSickleCell so as to spread the message of the campaign to a wide variety of audiences. Followers will be encouraged to create their own testimonial videos and share them on social media with the hashtag to continue to spread awareness. Each morning, one of the testimonials will be featured in the daily Facebook post.

T-Shirt Design Contest

Followers will be challenged to design their own t-shirt for the cause and enter their designs through a contest on our website. We will then share the designs on our Facebook and Twitter pages for our followers to "vote" on which one they like best by sharing their favorite. Whichever design receives the most shares will win the contest and be sold at the Walk to End Sickle Cell Anemia with profits benefiting SCD research. Additionally, any participant of the walk who raises over $500 will receive a free t-shirt the day of the walk.

Celebrity Endorsements

Senator Tim Scott

Senator Scott is the Co-Chair of the Sickle Cell Disease Congressional Caucus and just recently brought attention to the disease during Seema Verma's confirmation hearing where he reported that in 2014 alone there were 246,569 emergency room visits by individuals affected by SCD. Therefore, he works to continue to improve medical care for SCD patients and will be invited to speak about his work during a Panel on Sickle Cell Anemia Awareness which will be live-streamed on the #StickItToSickleCell Facebook page.

Tionne Watkins

Also known as T-Boz, signer from the 90's band TLC, Tionne suffers from SCD and has been outspoken about her disease as she will be releasing a new book titled A Sick Life in September. Two tickets to TLC's revival "I Love the 90's - The Party Continues" tour and two copies of her book will be raffled off to anyone who retweets or reposts the ad on social media. Tionne will also be invited to speak about her experience at the conference as well as participate in the Walk to End Sickle Cell Anemia.

Ryan Clark

Ryan was always aware that he carried SCT, however, it was not until 2007 that the Pittsburgh Steeler's Safety experienced a SCD crisis while playing against the Bronco's in Denver, Colorado. The high altitude of the stadium triggered SCD symptoms in Ryan's SCT. After experiencing dramatic weight loss, high fevers, and spleen complications, Ryan dedicated the rest of his career to advocating for SCD awareness and aims to remove the stigma associated with the disease. A signed Ryan Clark jersey will be raffled off to a random Twitter follower and he will also be invited to participate in the Walk to End Sickle Cell Anemia.

Literature Review

ALS Ice Bucket Challenge

The ALS Ice Bucket Challenge was a successful social media campaign that challenged people to share a video of themselves dumping ice water over their heads and donating $20 to the ALS Association then challenging their friends and family to do the same over social media.

Not only was the campaign able to bring widespread awareness of ALS by reaching millions of people on social media, but with the increase in donations, the ALS foundation was abel to discover a new ALS gene to target for drug development. The #StickItToSickleCell campaign hopes to make similar progress with the donations collected throughout Pain Awareness Month.

ESA Hearts St. Jude

Saint Jude's research hospital partners with greek organizations across college campuses to help fundraise and raise awareness for their cause. During the month of February, St. Jude partners with the college service organization Epsilon Sigma Alpha to complete a social media based fundraising. Members of the organization share stories from St. Jude patients to inspire their friends and family to donate. This past February, ESA chapters across the country raised a total of almost $40,000 to benefit St. Jude. The #StickItToSickleCell campaign hopes to follow a similar strategy by partnering with organizations on college campuses who can promote education and awareness of SCD to a larger audience.

#1ViralVoice by the Sickle Cell Thalassemia Patients Network

From 10:00am to 10:00pm on September 19, 2012, the Sickle Cell Thalassemia Patients Network engaged in a 12 hour Tweet-A-Thon with the goals of raising awareness for SCD and raising $20,000 through online donations. The hashtag continued to be used in during 2016's campaign and continues to spread awareness about SCD. The #StickItToSickleCell campaign hopes to engage in an online conversation about Sickle Cell Anemia awareness in a similar way as well as hopes to model the #1ViralVoice campaign in its ability to be modified year after year and still remain relevant to the cause.

Results

The #StickItToSickleCell campaign took place September 1-31 during National Pain Awareness Month. The month long social media campaign culminated in a nationwide Walk to End Sickle Cell Anemia which attracted 1,000 participants. Through fundraising and other donations, $100,000 was raised for SCD research. Additionally, 100 pints of blood were donated through the weekly blood drives, enough to provide one sickle cell patient a blood transfusion for each day of the month. Throughout the campaign, Tweet and Facebook Post Impressions were tracked and the campaign adjusted those posts that were not as popular. However, 1,000 Twitter followers and 1,000 Facebook likes were accrued with a total of 5,000 impressions. Additionally, the #StickItToSickleCell was tweeted 500 times and our Facebook Live-Stream Panel Discussion with Senator Tim Scott attracted 100,000 viewers. Finally, celebrities such as Ryan Clark and Tionne Watkins both tweeted using the #StickItToSickleCell which reached their combined 50,000 twitter followers.

Project created by Brielle Powers

Sources:

Information:

  • https://www.cdc.gov/ncbddd/sicklecell/data.html
  • https://sicklecellanemianews.com/2016/10/11/long-life-expectancy-is-possible-for-sickle-cell-disease-patients-study-says/
  • https://www.cdc.gov/ncbddd/sicklecell/traits.html
  • http://www.hematology.org/Patients/Anemia/Sickle-Cell-Trait.aspx
  • http://people.com/celebrity/tionne-t-boz-watkins-memoir-a-sick-life-sickle-cell-anemia-tlc/
  • http://www.nflplayerengagement.com/next/articles/a-carrier-of-the-sickle-cell-anemia-trait-ryan-clark-has-made-finding-a-cure-for-the-disease-a-top-priority/
  • https://www.sicklecelldisease.org/2017/03/01/u-s-senator-addresses-sickle-cell-disease-during-vermas-confirmation-hearing/
  • http://www.alsa.org/fight-als/ice-bucket-challenge.html??referrer=https://www.google.com/
  • http://fundraising.stjude.org/site/TR?fr_id=64186&pg=entry
  • http://www.sctpn.net/1viralvoice/blog/2012/09/19/sickle-cell-awareness-advocacy-goes-social-w-1viralvoice/

Images:

  • http://singersroom.com/content/2013-01-17/t-boz-talks-reality-tv-fighting-for-life-alone-upcoming-music-being-multi-talented-more/
  • http://www.sportingnews.com/nfl/news/ryan-clark-announces-retirement-on-espn-steelers-redskins-giants-nfl-career-stats-pittsburgh-washington/zihe78fxyo8u10vyt1rldjrgx
  • http://www.bet.com/topics/t/tim-scott.html
  • https://www.stjude.org/get-involved/at-school/college-fundraisers/greek-organizations/epsilon-sigma-alpha-international/esa-hearts-st-jude.html
  • https://www.booster.com/knowsicklecell
  • https://www.booster.com/sc101fundraiser3
  • http://www.sctpn.net/1viralvoice/campaigns/sicklecell-live-tweet-chat-using-1viralvoice/
Created By
Brielle Powers
Appreciate

Credits:

Created with images by scooterdmu - "Sickle cell blood smears"

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