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  1. How NFL Stars Jason and Devin McCourty “Tackle Sickle Cell”

    February 29, 2016 by Andrea

     

    In celebration of World Rare Disease Day, we're highlighting the contributions of the McCourty Twins: NFL stars who have dedicated themselves to the sickle cell cause.

    For the fourth straight year, Jason and Devin McCourty partnered with Embrace Kids Foundation to host the annual Tackle Sickle Cell event on Saturday, February 20. Inspired by an aunt and uncle who live with SCD and their late father who carried the trait, Jason and Devin have committed themselves to helping raise awareness and funds for sickle cell warriors. 

    A two-fold event, the twins hosted a blood drive that Saturday morning and a casino-themed fundraiser that night. Their goal for the blood drive, which has seen an increase in donations every year, is to make people aware of the importance of having a diversified blood supply. As Jason McCourty told New Brunswick Today, “The biggest thing with us getting behind this blood drive, is trying to get a more diverse attendance... getting more minorities out giving blood. I think it’s huge and it helps a lot." Why is a diversified blood supply important? According to the American Red Cross, sickle cell affects close to 80,000 African Americans in the United States, all of which will need blood transfusions at some point. And while O negative is a type that can be matched with anyone, it is rare and therefore, not in huge supply. Having donors, especially those of African descent, will allow for a larger stockpile of blood types that specifically match African Americans.

    During the evening casino-themed fundraiser, the twins were able to help raise $35,000! This money will go toward scholarships, medical financial assistance, and other social services for people living with SCD. To read more on this year's fundraiser, check out the original article from The Daily Targum here.


  2. The Black Panther Party and Its Dedication to Sickle Cell Awareness

    February 16, 2016 by Andrea
    Photo: Twitter

    Photo: Twitter

     

    A couple of weeks ago, we kicked off Black History Month by recognizing the contributions of several Black Americans to sickle cell disease. This week, we're continuing that recognition by highlighting the efforts of the Black Panther Party (BPP). This is especially significant given the fact that so many people still have strong misconceptions about the Party, misconceptions that came to light again recently after Beyoncé payed tribute to them (this year being the 50th year since they began) during her Superbowl performance.

    "Serve the people, body and soul" is actually what the Black Panther Party was all about. This motto was more than a mere tagline or hashtag-worthy saying to the group, though. It was actively practiced through initiatives, such as the free school breakfast program, the free ambulance service, model schools, and the establishment of the People's Free Medical Clinics in several cities across the country. One of the functions of these free clinics? To screen people for sickle cell disease and sickle cell trait, which they began doing in 1971.

    As discussed in the book, The Black Panther Party Reconsidered, "Panthers were at the forefront of an educational and medical campaign to eradicate sickle cell anemia ... In a front page article in The Black Panther, entitled "Black Genocide, Sickle Cell Anemia," the Party accused the United States government of refusing to conduct research to find a cure for sickle cell anemia." By the time 1973 rolled around, the federal government decided to get involved and began funding research into SCD. While this was a win for sickle cell overall, this move also unfortunately disrupted the Party's work. If it hadn't been for them, though, there's no telling how long it would have taken the government to begin work on SCD research.

    For more information on how the Black Panther's pushed for sickle cell awareness and research funding, check out the links below:

    The People's Fight Against Sickle Cell Anemia Begins
    A Huey P. Newton Story: Community Survival Programs
    The Black Panther Party: Service to the People Programs


  3. These Warriors Had Their Wishes Granted and Their Stories Will Melt Your Heart

    November 30, 2015 by Andrea
    Photo: CreateHER Stock

    Photo: CreateHER Stock



    'Tis the season for giving, miracles, and making wishes come true. But, organizations such as the Make-A-Wish Foundation and others like it grant the heart's desire of children throughout the year. Read on to learn about some of the many wonder-filled experiences young SCD warriors have received, and perhaps, you'll be inspired to refer a warrior that you know this holiday.

    1) Kevin, 14, wished to be an Air Force pilot.
    High altitudes can trigger a crisis, but these wish granters had a solution.

    2) Shannon, 13, wished for a shopping spree.
    And it came complete with the red carpet treatment, full makeover, personal shopper, and photo shoot!

    3) Daniel, 12, wished to spend a day with the Steelers, his favorite football team.
    "Every member of the Steelers signed his football, and he even posed for pictures with several of the players."

    4) Amir, 9, wished for a trip to Hawaii to see the volcanoes.
    "The thing I liked most was the helicopter ride because you could go over a giant mountain and see all these waterfalls and volcanoes.

    5) Breanna, 10, wished for a Yorkie puppy.
    "She likes to get rubbed in between her ears and her belly and she likes to be held."

    6) Isatu, 7, wished to be a rock star.
    "Singing gets her through the rough times."

    Do you have a wish story to tell? Share it in the comments below!


  4. This Sickle Cell Awareness Month, Be The Match

    August 17, 2015 by Andrea
    BeTheMatchpost

    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.

    Xickle Button


  5. A New Short Film About Sickle Cell Has Begun Screenings in London

    July 13, 2015 by Andrea
    Movie poster art: Duane Valentino

    Movie poster art: Duane Valentino



    When writer/director Ethosheia Hylton started doing her own research on sickle cell, she realized just how important raising awareness for this disease is -- especially in the Black community. Her research ultimately led to the inspiration for her newest short film, "Lia," which follows a South London teenager as she tries to cope with her SCD and live life as a typical teen.

    According to Hylton, "Lia is a 15-year-old girl living with the sickle cell disease, who craves nothing more than to be a normal teenager like her friends and everyone else. Her strict mother Jackie doesn’t let her do anything or go anywhere and Lia has had enough. One day she decides to do what she wants for a change, disobeying her mum and staying out late with her friends in the hope of seeing her secret crush Ryan. However, the day turns sour when Lia suffers a sickle cell crisis and is left to deal with the after effect of her choices." 

    Watch the trailer below and learn more about the movie by clicking here and following Hylton and Lia on Twitter.


  6. Try Self-Hypnosis to Reduce Sickle Cell Pain

    June 9, 2015 by Andrea

    self-hypnosis post

    Get back to living your life with less worry and anxiety by incorporating cognitive-behavioral therapy into your regular sickle cell treatment routine. The most researched type of behavioral intervention for the management of sickle cell pain, according to The Journal of the National Medical Association,  this process works to "modify patients' thoughts, beliefs, feelings, and behaviors" by fusing coping strategies in with traditional medical treatments. One of those strategies is hypnotherapy.

    For thousands of years, hypnotherapy has been practiced in some form by some peoples -- even children can learn -- however, it wasn't until 1995 that the National Institutes of Health (NIH) officially began to recognize and recommend it as a valuable treatment for chronic pain. A form of guided mediation, hypnotherapy can help the people who practice it and are open to it to reach a heightened state of consciousness and learn to control their own levels of awareness -- including the awareness of pain. According to Integrative Medicine Insights, "Hypnosis involves a change in the brain's perception." This change can affect the way you experience pain, namely by helping to reduce the severity and frequency of mild to moderate pain episodes. "Since hypnosis is a cognitive-behavioral strategy that has been shown to have a powerful effect on pain management in a number of settings ... a program designed to teach and encourage the use of self-hypnosis may positively impact the pain perception, sleep quality, functional outcomes, quality of life, and satisfaction of SCD patients," continues the article. 

    Paul Van Ravenswaay, a psychiatrist in Washington, D.C. told the Washingtonian in a March 2012 article, "Pain is a sensory experience analogous to hearing and sight. In hypnosis, you can learn to ignore discomfort by focusing instead on a pleasant scene ... Or, the discomfort could be experienced as a different, more tolerable sensation." Sickle-cell patient, Beatrice Bowie, who is also mentioned in the article can identify, as she was taught self-hypnosis by another expert, Daniel Handel, a doctor at the NIH. "Before I started hypnosis, I couldn't cope with it," she told the Washingtonian. After learning this technique, though, she was able to deal with pain episodes differently. "Whenever I am having a crisis, I put earphones on and listen to music. It relaxes me ... I go back to the days when I was happy."

    So, how can you get started? It's actually really easy, and you don't even have to spend money on expensive self-hypnosis DVDs or CDs. A quick YouTube search can pull up dozens of self-hypnosis videos and all you have to do is find the one that works best for you. 

    Have you ever tried self-hypnosis to manage sickle cell pain? If not, will you try now, after reading this post? Tell us in the comments below!


  7. 3 Steps to Raising Awareness and Preventing Occurrences of Silent Stroke

    May 4, 2015 by Andrea

    Raising awareness for silent stroke is of the utmost importance. Here are three ways that you can help get the word out.


  8. Meet Cesear Sant: Sickle Cell Warrior, Child Prodigy

    March 16, 2015 by Andrea

     

    Photo: GoFundMe

    Photo: GoFundMe



    Even the youngest of sickle cell warriors don't let their disease stop them from greatness. Take 5-year-old Cesear Sant, who lives in Winston-Salem, North Carolina with his family. At the age of 4, he had his first acute stroke. Over the next year and a half, he had two more -- some of which left him unable to walk or talk for awhile. 

    This amazing little boy doesn't allow sickle cell to define him, though. He is also blessed with an immense talent for playing the violin, and as his father told NationalGeographic.com, "Since early on, you see he loves music. Music is the most important thing ... I'm always saying that the violin helped save his life." Considered to be a child prodigy, Cesear, at just 5 years old, is able to play Vivaldi's Violin Concerto in A Minor -- something that his own violin teacher couldn't play until she was 12.


    Watch Cesear's entire story here. And, to contribute to his bone marrow transplant fund, visit his family's Go Fund Me page.


  9. The Single Cell Phone App Every Sickle Cell Warrior Needs Now

    November 14, 2014 by Andrea

     


    You can use your cell phone to call your friends, check the weather, chat on social media, buy movie tickets, play games, and even get a date. And now, you can also use your cell to get better care during a sickle-cell crisis. 

    Say hello to the new VOICE Crisis Alert App, which is bringing sickle-cell care into the 21st century. 

    Dedicated to empowering adults and kids with SCD, this new app makes recording and communicating pain events easier than ever. Here's how it works: Simply download the app to your Apple or Android smartphone or tablet device, enter important contacts (think family, physicians, friends), track your pain, and relate that pain to your selected saved contacts via text or e-mail. 

    "The user can track pain at each site on the body, and identify pain intensity on a scale of 1-10," explains Shondrella Avery, the VOICE Crisis Alert spokeswoman in the video above. 

    "[With] a few touches of your phone, you can alert everyone about how you're feeling," says one user, also seen in the video. 

    What's more, this app doesn't require any login information or WiFi -- everything from your contacts to your pain history (which is saved for up to 90 days) are kept directly on your device. You can also personalize your avatar (skin color, hairstyle, clothing, and more). 

    Have you -- or will you -- use this app? What do you like most about it? Tell us in the comments below! 




  10. How Students with Sickle Cell Can Choose the Best College for Them

    October 31, 2014 by Andrea

    Click here to find out how to help your rising college freshman find the right school for him or her.


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