Sickle Cell Warriors

Tag "SC News and Research"

Sickle Cell Disease Stamp —Do Your Part!

SICKLE CELL DISEASE AWARENESS STAMP In 2004 the Sickle Cell Disease Awareness Stamp was created as a part of the U.S. Postal Service’s stamp program that celebrates the people, events and history of our nation. It also served as another way for the U.S. Postal Service to continue its tradition

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True Life —I Have Sickle Cell

Hey guys, MTV’s True Life is doing a story on ” I have a life altering ailment or illness.” If you are interested getting our story out there then you need to send an e-mail to seriousillness@mtvn.com. You should include your name, location, phone…etc. Let’s make sickle cell known to

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Sickle Cell Test Plan by the NCAA

This article was shared at the NING sickle cell forum. The content itself wasn’t bad, it just stated that the NCAA was considering mandatory screening of all players to prevent those that have sickle cell trait from adverse health outcomes. The premise of it sounds pretty good, screen all players

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Message

So September is Sickle Cell Awareness Month…I’m sure many of you already know. I’ve been out of the SSA loop for a minute but so many of my readers are going through crises right now that it’s breaking my heart. I’m sending warm hugs via cyberspace to everyone that is

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PPH Sickle Cell Drug Trial Stopped

NIH stops trial of drug for sickle cell patientsJuly 28, 2009 | 10:46 am The National Institutes of Health has halted a clinical trial using sildenafil to treat pulmonary hypertension in sickle cell patients after preliminary results showed that the drug was actually increasing sickle crises rather than reducing them.

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Speak Up!

A friend on the Ning Sickle Cell forum is working with doctors at Johns Hopkins to develop training for medical students on sickle cell treatment & care. They want to know what issues we’re having with health care treatment. This is our chance to get on the soapbox and let

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Mayo Clinic on Nicosan

Nicosan is referenced on the Mayo Clinic website. We’re moving on up! Check it on the end here

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Sickle Cell costs $$$

A new study shows that the annual cost of medical care in the US forpeople who suffer from sickle cell disease exceeds $1.1 billion. Check out the full article HERE. They report that the average total cost of care per month per patient was $1,946, with substantial variation across age

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Global Sickle Cell Awareness Day

The United Nations and the World Health Organization has declared June 19th World Sickle Cell Awareness Day!! We have our own day y’all. Congratulations! Right now there is a huge festival in New York (I will be posting info in case you can make it), Cayman Islands, the ATL and

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World Sickle Cell Fest in NY!

World Sickle Cell Day Festival is June 19!!!—that’s tomorrow! Date: Friday, June 19th, 2009Time: 10:00AM to 6:00PMPlace: Dag Hammarskjold Plaza47th Street (Between 1st & 2nd Ave)New York, NY 10017Event: “World Sickle Cell Day”with special guest Ruben Studdard (American Idol winner) and many others The Queens Sickle Cell Advocacy Network, (QSCAN)

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Nicosan Woes

Hello everyone, I’ve been digress in mentioning a few snags that have hit Nicosan. I’ve gotten several emails over the past few weeks that have alarmed me as well as sent me for more information. As many of you might know, Xechem USA filed for bankruptcy last year. Currently there

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Sickle Cell & President Obama

My sister sent this to me from a friend of a friend. Guess Sickle Cell is in the eye of our new president after all! Hi All, In our continuing efforts to spread awareness about Sickle Cell Disease…Gabriel and I got to meet with Pres. Obama on this past Tuesday!

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Research Study

This is not my research, therefore I do not have additional information about this project. It is being conducted by Kimberly Grace, a PhD student at Alliant International University. For questions and contact information, please click the link to the survey. For anyone over 18 with sickle cell, please consider

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Nicosan Research Study

Hey everyone, I’m seriously trying to set up a study dealing with Nicosan. The question in my last post has me thinking that there are some unanswered questions. The think most of the skepticism does come from the fact that it’s an African herbal remedy versus a Westernized one. There

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Announcements, Announcements, Announcements!

Hey everyone, If you have gotten your Nicosan shipment and would like to take part in a study regarding that documents the benefits of Nicosan please email me. I’m also interested in Hydroxyurea users or people that use other drugs and alternatives. I’m trying to conduct a pain survey that

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