World Sickle Cell Day Activities!

Hello everyone – here are some World Sickle Cell Day Activities!

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 features 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 were sent to the White House. Furthermore, all we heard is *crickets*. The campaign needs 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. Get sickle cell trending on twitter. We can do it, if we all band together. Learn more and get your graphic assets at http://speakonsc.org/

 

 

 

 

 

 

 

 

#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? It should be noted that this is a chance to do one for sickle cell. The song is Uptown Funk by Mark Ronson & Bruno Mars. In Atlanta, you can attend the 6/19 Sickle Cell event at Piedmont Park, 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. Dress in red or Sickle cell gear, especially your friends and family
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

#3: TheSickleLife Webinar – June 18th Online

Here is a webinar you can use to communicate more about sickle cell. It’s an interactive session (video, audio, questions etc.) everyone can participate in and learn from. For example, use it to educate yourself, friends and family about more aspects of sickle cell. 1091 Group is hosting the event and covers aspects of living with sickle cell disease. As a result, they will talk about  medications, pain, managing your life, sickle cell trait, clinical research and more.

The webinar is on June 18th online 11am-2pm (EST). Register now to get reminder updates. Click this button [button link=”http://goo.gl/forms/inJEgPU347″ icon=”fa-star” size=”big” side=”right” target=”” color=”b70900″ textcolor=”ffffff”]Register Here![/button] To learn more visit the 1091 Group.

 

 

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

I will attend this event in person, and you can also attend online. Importantly, 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. In addition, 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.

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. In addition, more information is on the forum and to register for this meeting,  visit: https://www.nhlbi.nih.gov/…/sickle-cell-disease-forum.

Also, local events are 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!