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  1. An Innovative Take on Raising Awareness for Sickle Cell

    August 24, 2015 by Andrea
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    CC BY-NC-ND 2.0 via Neil Moralee




    We're always scouring the web for innovative ways others choose to raise awareness for sickle cell, especially with the start of Sickle Cell Awareness Month a little more than a week away. Some things we've seen: 

    1. Booster campaigns selling T-shirts to raise money for sickle cell awareness.

    2. Celebrity bowling challenges -- the K.I.S. Foundation is hosting it's 12 annual event next month. 

    3. Numerous sickle cell walks/runs like this one, hosted by the Greater Boston Sickle Cell Disease Association.

    And recently, we ran across this article from the Fox affiliate in Birmingham, Alabama. More than 100 bikers gathered this weekend (August 22, 2015) to embark on a 40-mile ride to raise money for sickle cell warriors. The ultimate goal of these sickle cell supporters? A little something different: to create a sickle cell specialty license plate that will serve to also raise awareness and research funding for SCD.

    Check out the full article: Bikers raise money for Sickle Cell research with 40-mile ride

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  2. This Sickle Cell Awareness Month, Be The Match

    August 17, 2015 by Andrea
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    Photo: CreateHER Stock



    Every September, you show your support for Sickle Cell Awareness Month by entering 5Ks, wearing your red, attending community events, and donating blood. All of these things are wonderful and much-needed; however, if you're looking for a new way to give back, check out Be The Match. As stated on its website, "Be The Match is a global leader in bone marrow transplantation," and many sickle cell warriors need these transplants to save their lives, so that they can receive new bone marrow that will no longer produce sickled red blood cells, but normal ones. 

    Currently, bone marrow transplants are the only cure for SCD -- but they are very hard to come by, especially since finding a good match depends a lot on the ethnic backgrounds of the patients and the donors. In fact, according to Be The Match, 70% of all patient don't have a matched donor in their family. Here's how you can help:

    1) Register for Be The Match.
    To sign up, you must be between the ages of 18 and 44, as this is the age group that is requested by doctors 90% of the time.

    2) Wait to Be Contacted.
    If you turn out to be a potential match, you will be contacted about next steps.

    You can potentially save someone's life. Join now and spread the word.

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  3. Quick-and-Easy Sickle Cell Resources to Share with Your Child’s School

    August 10, 2015 by Andrea
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    Photo: CreateHER Stock



    Many students are heading back to school in the next few weeks, and with all the open houses, after school activity sign ups, and clothes and school supplies shopping, your schedule is already getting hectic.

    Need some Monday Motivation to help ease that overwhelming feeling you've got trying to creep in? Here are some quick-and-easy resources you can share with your child's teachers and administrators to help make sure your sickle cell warrior starts the school year off right:

    1. Present your child's teacher with this tip sheet from the CDC to help him or her have a better understanding of what sickle cell is and how she can support your child's needs throughout the year.

    2. Introduce this planning sheet as a supplement to your child's 504 plan. It's filled with a list of "reasonable accommodations" that can assist your child's teacher in the classroom setting.

    3. Make the entire school staff aware of your child's needs by setting up a meeting with your student's teachers and the administrative staff, and sharing this school policy guide to sickle cell and thalassaemia. It goes into even more detail than the tip sheet and gives information about preventable and supportive measures that schools can implement in a simple, understandable way. 

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  4. 5 Wins the SCD Community Has Achieved

    August 3, 2015 by Andrea

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    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

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