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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.

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  2. How Blood Substitutes May be the Solution to Donation Blood That’s in Short Supply

    February 22, 2016 by Andrea
    Photo: Filter Forge [CC BY 2.0]

    Photo: Filter Forge [CC BY 2.0]



    If you've ever watched an episode of the HBO series "True Blood," you're familiar with the idea of using synthetic blood to replace real blood. In real life, of course, synthetic blood wouldn't be used as a vampire deterrent, rather it would be used to provide blood transfusions to people who needed it -- like patients with sickle cell -- if actual blood was in short supply. And according to the Association of Donor Recruitment Professionals, the cache of donated blood tends to decrease during the winter months.

    Now, this concept isn't exactly new. In fact, there have been several blood substitutes created and tested over the past few decades; however, there is no blood substitute that is currently approved for use on humans in the U.S. That may all change in the next few years, though. As early as 2017, the Universities of Oxford, Bristol, and Cambridge will run a human clinical trial in which 20 people will given "blood" that has been created in a lab, reports the BBC. If the trial is a success, that will not only open up more options for blood transfusions when the supply is low, but it will also help better treat patients with more hard-to-match blood types, since the synthetic blood will work as O negative.

    Smithsonian magazine clarifies, "Blood substitutes don’t aim to replace real blood, they simply fill one of bloods’ roles: transporting oxygen. Some do this by just mimicking hemoglobin. Others are entirely novel, synthetic oxygen carriers." According to the Pacific Heart, Lung & Blood Institute, other benefits of synthetic blood include:

    1) No immune system reactions
    2) No risk of infectious disease transmission
    3) Longer shelf life -- from one to three years, sans refrigeration
    4) Doesn't infringe on some patients' religious beliefs

    We still have a few years until we find out whether or not a new blood substitute will be approved for human use, but knowing that we're one step closer is a great achievement.



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  3. 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

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  4. Be Inspired: 10 Sickle Cell Warriors Share Their Stories

    February 8, 2016 by Andrea
    Photo: CreateHer Stock

    Photo: CreateHer Stock



    Besides research texts and clinical studies, one of the best ways to learn about sickle cell is by hearing the stories from actual warriors, themselves. Read on for 10 first-hand accounts of what it's really like to live with SCD.

    The Bad Blood: My Life with Sickle Cell Anaemia
    "I wake up with an active volcano for a chest. When I breathe in, even lightly, I hear wheezing for miles. I don’t want to call the doctor but I call the doctor. Fifteen minutes later a receptionist leaves me a voicemail: If I can get to the surgery within the hour, I’ll be seen. I’m not sure how I make it down the stairs – and into the car and through the 20-minute journey and out of the car and across the courtyard and into the reception and down the corridor to knock on the doctor’s door – now that my limbs are made of lead." Read the entire article here.

    "I Had This Disease That Nobody Understood."
    "When Brianne Lee — a 19-year-old aspiring cosmetologist from Maple Shade, New Jersey — was hospitalized back in June for a sickle cell-related illness, the last thing she expected was for her roommate situation to go all the way left. 'I had only been in the room for a day, and I knew I was to have a roommate seeing as it was a double room,' Brianne says. 'A mother and her daughter, who was about 11, walked in and settled down in the room. The mother asked the nurse what I was diagnosed with because she couldn’t have her child [who already had lupus] getting even more sick,' she explains. 'Eventually, she found out I have sickle cell disease and lashed out. She requested she and her child be put in a single room and that they deserved it because they didn’t know if I was contagious. It was absolutely shocking.'" Read more here.

    Sickle Cell Patient Refuses to Let Disease Define Her
    "When I was 5 years old, I was riding the new bike I had just gotten for Christmas when I fell off and the handle bars hit me in the ribcage. That night I began having difficulty breathing. I was rushed to the local hospital and within hours I had stopped breathing. I was moved to intensive care, revived, and placed on a respirator. The critical care doctors and the hematologist worked day and night to figure out what was happening to me ... Around the seventh day, my condition stabilized and it was learned that I was suffering from an acute chest syndrome, a condition common among sickle cell patients." For the entire story, click here.

    Naomi's Story
    “I want people to know that I love sports,” Naomi says. “I love throwing a football. I love doing dance and pointé and sometimes it hurts my toes, but I still get through it. I would say stay strong and you’re going to get through the hard times and get to the good times. And don’t say you’re going to live short, because you’re going to live long." Read more here.

    Patient Voices: Sickle Cell Anemia
    Here, you'll have a chance to hear the stories of six sickle cell warriors, ranging in age from 8 years old to 50 years old. Listen to each of their stories, here.


  5. Celebrating Black History Month and Recognizing Those Dedicated to Sickle Cell Awareness

    February 1, 2016 by Andrea
    Photo: Screenshot/Vimeo

    Photo: Screenshot/Vimeo, Toyin Adesola



    As we celebrate the start of Black History Month and honor the contributions and struggles of those who've come before, we'd also like to recognize a few people who are making history today in regard to sickle cell awareness. A disease that disproportionately affects African Americans, it is paramount that we celebrate advancements and those people who help to make them a reality.

    1. Memphis Grizzlies Player, Mike Conley
    According to The Commerical Appeal, Orion Federal Credit Union donated $15,000 to the Methodist Healthcare Comprehensive Sickle Cell Center in Tennessee on Conley's behalf. A longtime advocate of sickle cell, Conley's passion for raising awareness of SCD stems from the fact that a few of his own family members are warriors, themselves.

    2. The Team at the University of Alabama at Birmingham's Adult Sickle Cell Clinic
    Last week, UAB also raised money -- $1 million, in fact -- to go toward its Adult Sickle Cell Clinic. Not an overnight success type situation, raising these funds took half a decade and a lot of perseverance. As reported by Alabama Newscenter, back in December of 2010, the North Central Alabama chapter of the Sickle Cell Disease Association of America pledged $1 million to the clinic. Over the course of the next five years, many fundraising events were held and a sickle cell awareness vehicle tag was created and sold until, finally, the full amount was collected and presented to the clinic this past December.

    3. Toyin Adesola
    A native Nigerian and sickle cell warrior for more than 40 years, Adesola refused to succumb to sickle cell and has made a name for herself as a speaker, advocate, and author. In a recent interview with Konnect Africa, Adesola credits her faith in God with helping to keep her going. She also launched a nonprofit called the Sickle Cell Advocacy and Management Initiative to help reduce the occurrence of SCD in Nigeria and to "empower and improve the lives of people with sickle cell anaemia disorider to live healthy, positive, and impactful lives by educating, creating awareness, and providing support through various channels." Her 2005 autobiography, "Still Standing", is also being made into a film. Check out the trailer here.

    Stay tuned throughout this month, as we recognize even more of those who contribute to the awareness and advocacy of SCD.

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