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    kswehbie Feb 19 2019 8:57 pm

    https://unc.az1.qualtrics.com/jfe/form/SV_5jRxEzK7zqVu8VT

    Hello all!

    Thank you for your patience and I am sorry about the repeat wall post. I have attached a working link to the survey I listed previously. I am sorry for posting again and appreciate your patience!

    Have a good day!

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    SCDuser1690 Feb 19 2019 6:40 pm

    When I clicked on the link it could not be found

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    kswehbie Feb 17 2019 5:38 pm

    Hello all,

    I am a nursing student at UNC-Chapel Hill and have been studying sickle cell disease. I would like to hear from you, in your words and from your own life experience to better understand the experience of a sickle cell patient who is enduring a pain crisis and the link to hydration. The survey should take five to ten minutes to complete! Sadly, I can not offer compensation for this survey as a student. Please click on the following l…Read more

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    andreharris Feb 14 2019 6:17 pm

    https://www.onescdvoice.com/news-meeting/doris-wethers-front-lines-against-sickle-cell-dies/

    Sickle Cell History + Black History

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    Shirley Miller Feb 13 2019 4:26 pm

    More Pioneers in Sickle Cell Disease - Remember to look them up. Knowledge is Power.

    Dr. Clarice Reid
    Dr. David Satcher
    Dr. Charles Whitten
    Dr. George Dover
    Dr. Graham Sargent

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    Jo-Ann C Feb 12 2019 8:58 pm

    Hello. My name is Jo-Ann and I have sickle cell trait. My older and younger sisters both have Sickle Cell Anemia. Last year, my older sister Suzanne, passed away due to complications with this dreaded disease. She was just 29 years old. Back home, Guyana, there isn’t much help for Sickle Cell patients. A lot persons aren’t aware of the seriousness of the disease and others don’t care. Including the hospitals. They treat the patients badly a…Read more

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    Amanda Vassall Feb 12 2019 3:19 am

    Rare Disease Week on Capitol Hill Learn more about Rare Disease Week on Capitol Hill here. Can't make it to DC? Attend Rare Disease Day in your local state. Happy to answer any questions!

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    andreharris Feb 11 2019 4:53 pm

    Charles Richard Drew (June 3, 1904 – April 1, 1950) was an American surgeon and medical researcher. He researched in the field of blood transfusions, developing improved techniques for blood storage, and applied his expert knowledge to developing large-scale blood banks early in World War II. This allowed medics to save thousands of lives of the Allied forces. As the most prominent African American in the field, Drew protested against the pract…Read more

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    anniesingleton Feb 8 2019 7:21 am

    I am in a really bad crisis right now. One of those crisis where even your skin hurts. Then I logged onto oneSCDvoice and saw people actually responded to a wall post. I didn't think anyone, except GOD, was interested in anything I had to say. Knowing that people actually care about me and what I have to say made the pain a little less. I am going to get some of my fellow Sicklers from the clinic to join this community. I know a few of them real…Read more

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    YMC Feb 5 2019 10:24 pm

    Just a shout out to Kimberlin Wilson-George for Black History Month. She was the first person to be cured of sickle cell disease by bone marrow transplant in 1983. She is still doing well today!!

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    Granny Nancy Feb 5 2019 6:41 pm

    Hello and Happy New Year,
    I just got a postcard from the American Red Cross, encouraging people to make a blood donation to help those with Sickle Cell. I'm very glad to see the Red Cross pushing this. All of us know the importance of blood donations for sickle cell, many are on chronic transfusions which greatly improve quality of life. So thank you Red Cross, and thank you Dr. Yvette Miller, Executive Medical Director.

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    kswehbie Feb 4 2019 9:13 pm

    Hello all,

    I am a nursing student at UNC-Chapel Hill and have been studying sickle cell disease. Reading my textbook and journals only provides the surface of information, so this is why I would like to hear from you, in your words and from your own life experience. I am conducting a research study to better understand the experience of a sickle cell patient who is enduring a pain crisis and the link to hydration. I would like to gain more kno…Read more

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    Shirley Miller Feb 4 2019 1:58 pm

    Black History Month Pioneers in Sickle Cell Disease. Reading is essential to growth in knowledge and knowledge is power. Look up these pioneers and their contributions to SCD.

    Dr. Roland B. Scott
    Dr. Angella Ferguson
    Dr. Marilyn Gaston
    Dr. Helen Ranney

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    Shirley Miller Feb 1 2019 2:32 pm

    February is Black History Month. I choose to honor those who are pioneers in sickle cell disease. I will publish a few names throughout the month. Please look up their accomplishments.

    Yvette Francis-McBarnette
    Florence Neal Cooper Smith
    William Warwick Cardozo
    Charles Drew

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    Shamonica Wiggins Jan 31 2019 10:32 pm

    How's everyone holding up in this cold weather??? I'm feeling sorry for those in the midwest and east coast.

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    Shamonica Wiggins Jan 31 2019 6:47 pm

    #BoldLipsForSickleCell is excited to host our first event of 2019. Please join me at the Dream It, Believe It, DO IT! Vision Board Party THIS SATURDAY, February 2nd, 3:30-5:30 pm. I look forward to meeting some Dallas, TX warriors. Ticket link in comments.

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    Amanda Vassall Jan 31 2019 2:31 pm

    I'm officially going to Rare Disease Week! Anyone else going to be there on behalf of SCD?

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    andreharris Jan 29 2019 3:25 pm

    Black History Month is approaching! Is anyone hosting any sickle cell related events?

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    andreharris Jan 29 2019 3:23 pm

    Health Datapalooza is seeking patient voices at its upcoming meeting, March 27th - 28th in Washington DC. A limited number of patient scholarships are available. Please read the link below for more information. The deadline to apply is February 15th. Thank you Dr. Lewis Hsu for sharing this with #oneSCDvoice

    https://www.academyhealth.org/page/2019-hdp-patient-scholarship

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    sicklecellnews Jan 27 2019 6:44 pm

    SICKLE CELL NEWSWEEK

    FATIMAH had a stroke at the age of 7. She recovered 100% and graduates May 2019 with a degree in Public Finance
    http://bit.ly/2FAO2KD

    Zandra Chidinma Nwogu’s first pain crises in eight years - ‘Water Marathon Therapy’ to the rescue
    http://bit.ly/2HvAi5k

    Folks with SCD can only TAKE but not GIVE blood. Lives have been saved or enhanced by the simple humanitarian act of blood donation
    http://bit.ly/2RWtUrY

    Novartis’…Read more

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