World Sickle Cell Day

Awareness and action will change a curative into a cure!

Juneteenth WSCD Partnership

2016

2014

We have had several major announcements to make regarding WSCD! 

 June 17, 2014

 http://www.juneteenth.us/2014juneteenthhealthmessage.html

 

Why have a Juneteenth WSCD Partnership

 

This global partnership is between the following organizations: 

The National Juneteenth Observance Foundation (NJOF), the Sickle Cell Disease Association of America (SCDAA), the National Medical Association (NMA), and the African American Blood Drive and Bone Marrow Registry for SCD Awareness (AA4SCDA), along with a Marrow Registry and several Public Cord Blood Banks.

 

Goal:  Working together we will educate the attendees during the Juneteenth Celebration about Sickle Cell, marrow and cord blood donations.

 

WE MUST educate society members about:

What we need them to understand about Sickle Cell and trait.

What we need them to do for those with the disease and trait.


We need society to understand that those diagnosed are born with a unique rare disease that is in every race.  A painful, deadly disease!  One that slowly kills a part of a patient every time the blood is blocked in a blood vessel which prevents oxygen from getting to areas of the body.  It can also cause a patient life long chronic pain, to have a mini strokes, a major stroke, a heart attack, etc! 

Helping people to understand why our Sickle Cell Community Members Diagnosed need "so much" pain RX, only because it's needed for them to become "somewhat free" from the pain to help them so they can get back to their regular life, living just like "normal" people!!!

Needed from healthy society members are to do the following:

-Donate blood

Ideally to become a blood/donor buddy, donating to one person who needs

        many transfusions the rest of their life!!!  Some every week, two, three or  

        4 weeks with one or more units!

 

-Adults (18 to 60) to become marrow/stem cell donors 

Ages 18 to 44=90% of matches

Ages 45 to 60=10% of matches 

Marrow donations = 25% of the time and comes from the pelvic area.

Stem cell donations = 75% of the time and is just like donating blood! 

 

-Expectant parents to donate their child's cord blood to a public bank FREE

These pain free acts would free a patient from "the Sickle Cell Experience," or another disease that could be cured from a cord blood transplant!  This is NOT gene therapy, so the SC gene could be passed on to their children!

parentsguidecordblood.org

 savethecordfoundation.org

 

Below is what I send to people when I find out that they are expecting: 

Save the baby's cord!!!

Congratulations on your pregnancy!!!

First, did you know that those parents diagnosed with Sickle Cell or have a child diagnosed you can save your newborns cord blood for FREE in hopes of using it to cure you or your child from the "Sickle Cell Experience!!"  Since it is for the family, I believe they will save for twins in this case!

parentsguidecordblood.org/helpline-for-families.php

Second, did you know that there are FREE public cord blood banks!  All a person has to do is let their medical team know that they want to donate the cord blood, go on line to fill out the application, receive and take the FREE cord blood collection kit to the hospital when they go to have the baby, give it to the nurse or Dr & that's it!  The medical team will take it from there, while your experiencing the birth, then looking at your wonderful child!!!  In this case there are a few restrictions like they won't save for twins!

Please help me spread the word & please look into it!!!

parentsguidecordblood.org

Until there's a cure for ALL~

Kind regards,

Nita T.

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June 16, 2014

World Sickle Cell Day (WSCD) has joined forces with others!!!

 

Listen in to the National Juneteenth Observance Foundation’s (NJOF), National Juneteenth Medical Commission Frank McCune, M.D., M.B.A., Health Chair and host of the weekly radio program: The Prosperity Show, this Monday, June 16th at 7:00pm CST, as we will discuss a major WSCD announcement!

 

Go to http://www.nationaljuneteenth.com/Juneteenth_National.html

Scroll down, look to the right, then click on the shows website address and go directly to listen in to his live global streaming hour long show!

 

Afterwards, click on Frank McCune, M.D., M.B.A., picture to learn more!!!

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