August 3, 2015 by Andrea
While we still have a long way to go when it comes to raising awareness of sickle cell disease, we also must take time to recognize just how far we have come. Here's a snapshot of 5 wins the SCD community has achieved in recent months:
1) Because of this White House petition and the #SpeakOnSickleCellObama social media campaign, the President has made sickle cell a priority for his administration -- just as we'd hoped.
2) As an example of this priority, the Department of Health and Human Services has been tasked with finding better ways of identifying people with SCD, improving health care access for warriors, studying data to advance treatment programs, raising awareness, promoting SCD education, and working toward developing a cure.
3) The Department of Health and Human Services has also launched Healthy People 2020, part of which includes developing actions to help prevent sickle cell, to reduce hospitalizations, and to increase treatment and education.
4) Evaluation of the goals listed above will continue via the RuSH project. Initially launched in 2010, RuSH (Registry and Surveillance System for Hemoglobinopathies) gathers information on people living with SCD to better understand their needs.
5) More federal funds have been allocated toward SCD research. The National Institutes of Health is researching current and new treatments, how to lessen complications of sickle cell, and how to develop a possible cure. The CDC is also researching sickle cell disease and developing more educational programs.
Keep these 5 things in mind as a constant reminder that your efforts are important and that they are working. Continue doing what you're doing and more wins are sure to come.
*SOURCE: Whitehouse.gov
Category: Sickle Cell Disease Tags: #SpeakOnSickleCellObama, sickle cell advancements, sickle cell petition, sickle cell research | Comments Off on 5 Wins the SCD Community Has Achieved
June 15, 2015 by Andrea
Photos: Twitter
World Sickle Cell Day is Friday (June 19), and as you know, this day is extremely important to the sickle cell community -- warriors, family, and other supporters -- because it gives us an official chance to bring awareness to this disease globally. Educating the entire world may seem like a daunting task, but when you join with others who have the same cause, you can really make a difference. That's why we're bringing you a round-up of four virtual campaigns to join this year. Put all of your efforts toward one or split your campaigning among all of them!
1) #KnowYourGenotype
The movement behind this hashtag is that everyone should have their blood tested before marriage and/or before having children, so partners can be aware of each other's sickle cell status (or lack thereof). This can help prevent more sickle cell births, thus working toward an eventual future of SCD eradication. To join, simply post your sickle cell status and/or your SS type to Twitter and tag #KnowYourGenotype.
2) #BoldLipsForSickleCell
Like ALS's ice bucket challenge, SCD's #BoldLipsForSickleCell campaign can easily go viral -- but to make it do so, we've got to show support and get our friends and family to, as well. Joining this crusade is simple -- and fun! All you have to do is take a selfie of you (or of you and your friends) rockin' a bold lip color, upload your selfie to social media, and tag it #BoldLipsForSickleCell.
3) #SpeakOnSickleCellObama
Let POTUS know how important it is that he speak out on SCD in support of World Sickle Cell Day by tweeting and retweeting #SpeakOnSickleCellObama. Doing so several times a day -- especially on June 19 -- will flood his mentions with a powerful message he surely cannot ignore.
4) #SleevesUp
The American Red Cross makes it easy to start your own virtual #SleevesUp campaign -- or to join one that already exists. Just visit this website, create your campaign, and invite your friends/family/social media community to pledge their support by promising to donate blood to sickle cell warriors.
Which of these campaigns are you planning to join? We'd love to see how you help spread awareness this World Sickle Cell Day. When you tag your campaign, also tag @XickleRBC so we can highlight your efforts, as well!
Category: Sickle Cell Disease Tags: #BoldLipsForSickleCell, #KnowYourGenotype, #SleevesUp Red Cross, #SpeakOnSickleCellObama, world sickle cell day | Comments Off on 4 Campaigns You Should Join For World Sickle Cell Day
