World Sickle Cell Day Activities!!!

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Hello everyone!

As you probably know, World Sickle Cell Day is around the corner on June 19th! This was established by the World Health Organization (WHO) and is celebrated all over the world. A few years ago, most of us didn’t know when it was, and if we did, we barely did anything to celebrate. For the first time ever, there is so much going on in the ‪#‎sickleCell‬ community for World Sickle Cell Day! You have no excuse not to get involved! This article will feature some events that have come to our attention that everyone can take part in, no matter where you are in the world. Please make an effort to do something!

#1 Speak Out on Sickle Cell Obama! Starting Now!

The first is the Twitter campaign ‪#‎SpeakonSickleCellObama‬. It’s been over 200 days since the sickle cell petition to the White House was submitted on October 30, 2014, but still no response from the White House. Several other petitions and letters have been sent to the White House and all we have heard is *crickets*. The campaign is to garner 10,000 tweets to get President Obama to speak on sickle cell disease. Use the hashtag #SpeakOnSickleCellObama, tweet him directly, or RT until he responds. We can get sickle cell trending on twitter, if we all band together. Learn more and get your graphic assets at http://speakonsc.org/

SpeakonSC graphic

 

 

 

 

 

 

 

 

#2 Stop. Drop. & Dance –  June 19th Online & @ Piedmont Park, Atlanta, GA

Have you ever seen a viral dance video like the one that was done for the Pharrell song Happy? Well here is a chance to do one for sickle cell. The song is Uptown Funk by Mark Ronson & Bruno Mars. In Atlanta, those that attend the 6/19 Sickle Cell event at Piedmont Park will have a chance to learn the choreography and be recorded doing it with a group. But you can join in too! Check out the video in the header or do a search for it.

 

  1. Get the song Uptown Funk
  2. Get your friends/family/group preferably dressed in red or Sickle cell gear
  3. Freestyle, or go with the choreographed version of the song
  4. Record a clip of yourself and your team performing the dance
  5. Upload to Youtube, and email the link to SCCConsortium@gmail.com
You can learn the choreography here:

#3: TheSickleLife Webinar – June 18th Online

Here is a webinar that you can use to communicate more about sickle cell. It’s an interactive session (video, audio, questions etc.) that everyone can participate and learn from. Educate yourself, friends and family about more aspects of sickle cell. This event is hosted by the 1091 Group and will cover aspects of living with sickle cell disease like medications, pain, managing your life, sickle cell trait, clinical research and more.

sicklelife1

The webinar is on June 18th online 11am-2pm (EST). Register now to get reminder updates. Click this button Register Here! To learn more visit the 1091 Group.

 

 

#4: NHLBI SCD Patient Forum – June 25-26, Online & in person @ NIH Campus, Bethesda, MD

I will be attending this event in person, and you can also attend online. Maryland folks, stop by and come say hello!

The National Heart, Lung, and Blood Institute (NHLBI) will host a patient-centered Sickle Cell Disease Forum, “Engaging the Community: Developing Solutions” on June 25-26, 2015 on our Bethesda campus. The purpose of this Forum is to engage the sickle cell community in key discussions about the future research agenda for sickle cell disease. Forum participants may attend in person or stream the Forum live via webcast and participate in the discussion by asking questions and sharing their thoughts directly via social media.

nhlbi meeting
Sickle cell disease research demonstrates a natural intersection of the mission of several NIH Institutes and Centers, and this meeting will convene key stakeholders of the sickle cell disease community—including patients and their families, advocates, health care professionals, researchers, and others—to inform the NIH research agenda. For more information on the forum and to register for this meeting,  visit: https://www.nhlbi.nih.gov/…/sickle-cell-disease-forum.

There are local events happening all over the country too! Call or check with your local sickle cell community organization to see what they are up to. But if they don’t have anything planned, maybe you can get them started on one of these projects! It’s going to be a great week!

Go Sickle Cell Community!

 

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