Sickle Cell Disease Awareness

A candle loses none of its light by lighting another candle!

How You Can Help

This page includes:

Take a read to understand the why, then change it:  Black distrust of the health care system is shrouded in the history that bears witness to a system built on the bodies of our ancestors. http://www.google.com/urlsa=X&q=http://natureis2bloom.wordpress.com/&ct=ga&c

News 4 Students

Register your Marrow and or become a Volunteer Ambassador

Donate Your Blood and or Become a Blood Buddy!       

Participate in the: See Sickle Cell ~ Say Sickle Cell Campaign/Movement

 

 Take it from Whoopi Goldberg's 0:16 video:  

http://www.youtube.com/BloodSourceCA#p/u/16/ZMR76F-y_WQ

Help Your Local Sickle Cell Foundation or Organization 

The ABCs of Grassroots Advocacy

Become a 1 VIP Advocate! ~ One Voice Interested and Participating

Our wish list for items and support

News 4 Students

Sickle Cell Awareness News 4 Students

Los Angeles/So Cal – 2011

 

 

About Sickle Cell Disease

 

Sickle cell disease is a painful, life-threatening illness that affects people of every racial and ethnic background, and is the most frequently occurring genetic disease on earth.

 

Elementary thru College Students Helping

 

When it comes to education students can really assistance peers diagnosed with Sickle Cell Disease (SC) or trait in several different ways:

• Really listen to your teacher, study and get good grades.

• Write clearly so someone can read your writing and become a note taker! Share what went on in class.  Many students diagnosed with Sickle Cell, cancer, leukemia, etc., when too sick, are at home or in the hospital.  Parents and students can make arrangements to get the homework, but can’t be in classroom!  They may not tell you, but you might notice that sometimes they are not in class.

 

Become a real friend, understand that Sickle Cell is not like having cuddies, you can’t catch it!  Students diagnosed with SC have to drink water and use the bathroom more often than others, so become a bathroom buddy!

• When it’s too cold or hot a student diagnosed with SC may not be able go outside.  Maybe you can stay inside and play or study with them.

• Learn all you can about Sickle Cell!  Students can be Advocates too!  Especially in college for those students who come from other states.  You can take them to the hospital or advocate for them, if/when needed. 

 

Many people in the medical and education systems still don’t understand about Sickle Cell. Some people think those students are just lazy, want attention or are on drugs!  Learn the truth and help a student diagnosed with SC.  They are just as smart as you, but their disease can prevent them from being in class.

Your assistance can be the difference between them being discouraged and dropping out of school to being a motivated and successful student! 

 

Consider doing your volunteer hours for Sickle Cell!  Thank you for doing your best in school, being a good friend and helping others! 

 

 

Bone Marrow and Stem Cells

 

We can help you get a good grade in school!

 

Question: Where in the body is blood made?

It’s the same place where all of the blood fluids are made.  The blood platelets, white blood cells, red blood cells, stem cells, plasma, etc. 

• Give up?  Well, have you ever eaten chicken, broken the bone and looked inside?  That’s the same thing it’s just dark because it was cooked!  You’ve got it . . . in the bone ~ it’s the bone marrow!

 

 

Blood Donations

 

High Schools and Colleges have blood drives~ donate if you can!

Some children and adults have to get a blood transfusion every 2 weeks, 3weeks or 4 weeks for the rest of their life!

 

 

 World Sickle Cell Day” is June 19 for Awareness!

If you can, please attend one year.  Activities may include: Arts, Crafts, a Blood & Marrow Drive, Food, Music, and more! http://www.Worldsicklecellday.webs.com/

 

 

Contact us for more info or to do a Sickle Cell project!

 

Register your Marrow and as a marrow donor match you can cure sickle cell.  If you can't be a marrow donor become a Volunteer Ambassador

 Register your Marrow Online:

- Go to BeTheMatch.org

- Go to join registry

- Answer a short series of questions

- Fill in the consent form

- You will be sent a swab kit in the mail, follow the instructions, and mail it back in the provided  prepaid envelope.

We encourage individuals to become or organizations to have people trained as a Volunteer Ambassador and register marrow.  Please contact  Pat Conley, Account Executive.

 

Be The Match Registry,

1231 E. Dyer Road, Suite 236,

Santa Ana, CA  92705,

office 714.800.1610,

cell 714.296.8479,

fax 714.662.4465,

email:sbaker@nmdp.org

If you do not meet the eligibility criteria for joining the Be The Match registry, there are many ways you can help. Consider making a tax deductible contribution to the Be The Match Foundation to assist with future marrow registration drives or consider becoming a Volunteer Ambassador.

Donate Your Blood and or Become a Blood Buddy!

Your good healthy blood helps many sickle cell patients and others live day to day!   For patients who are African American, best blood matches come from other African Americans; Hispanics to Hispanics, Whites to Whites, Asians to Asians, etc.

African American Blood Donors . . . Why?  Most sickle cell patients are African American.  We need African American blood, because it is the best match for African American Sickle Cell Patients.  If the blood is not a very close match, the patient may reject the transfusion and it could be fatal.

Did you know? . . . Most SCD patients are African American, but most blood donors are not, so the blood is often rejected.  Presently, less than 5% of African Americans donate blood, so sometimes needed medical procedures are not done.

Donating at your Hospital Blood Donor Center makes sure that your blood will go to a person of your same race!  Antigen (protein in the blood) testing also called (Phenotyping) can match donor blood closely with a patient’s blood.  This is the safest way because the blood is less likely to be rejected by the patient. 

Some blood donor centers are by appointment only and others welcome walk-ins, so please call first.  If you can gather names and phone numbers from your church members, co-workers, family, friends, etc. you can fax the sign up sheet(s) directly to your selected blood donor center(s).  The staff will call the donors and set up their appointments.  The blood donor centers offer free parking and/or promotional items like: Movie tickets, T-shirts, different items per month, Daily Planners, Lunch, etc.!

Join the Blood Donor Center's “Blood Buddy Program.”  People who are on chronic blood transfusions can build up so many antibodies until their body will stop accepting blood transfusions!  If each patient had 6 regular blood donors, they would tag team donating to the patient.  The patient would then have less of a chance to reject the blood. 

Just imagine how many antibodies a person could have if they got a transfusion every 3 weeks and every time it was from a different person . . . and if every person had just two different antibodies from the last person????  Okay there are 52 weeks in a year; divided by 3 equals 14.  14 times 2 equals 28.

28 new antibodies in a patients' body in just one year ~ equals 28 antibodies that the patients' white blood cells may start attacking thus . . . the rejection factor comes into place! 

But let's say the patient has 6 blood buddies that’s the same12 antibodies every year, and the patients' body gets accustomed to the other antibodies . . .thus                  NO REJECTION . . . Hey Now!! 

Did you know . . . Sickle Cell Trait blood can be used for donating platelets!  

Platelets are often needed for people in cancer treatment or for surgery. 

If we want people to help us, we have to help others!

Help Your Local Sickle Cell Foundation or Organization 

Truth be told

  • There has always been more funding towards other diseases than Sickle Cell Disease. 
  • It is a disease that is not in the face of the public and therefore does not get the attention from the public. 
  • The lack of focus on Sickle Cell Disease is why most people think Sickle Cell Disease is a black disease and has been cured!
  • While other illnesses are getting well deserved recognition, local Sickle Cell Foundations and organizations are closing up rapidly throughout the United States.
  • Recognizing that Sickle Cell Disease as a global health problem, the United Nations passed a World Sickle Cell Day Resolution. June 19, 2009 marked the first "World Sickle Cell Day" 

Please make a difference and donate to your local community Sickle Cell Foundation or Organization because without support, more organizations will close and many more people [present and future] will suffer!

The ABCs of Grassroots Advocacy

 

The ABCs of Grassroots Advocacy

A =     Advocacy

          You know what we need-let everyone know!

B =     Bravery

          Being brave means standing up for what you

believe in with the willingness to be chastised,

persecuted, and even hated

C =     Coalesce

          “Come together and form one mass or whole”

Source:

Steven Weaver, (530) 305-2554, steve@accesswithease.com © 2/2009

Become a 1 VIP Advocate! ~                                                                 One Voice Interested and Participating  

 

Working collaboratively we will make a difference!

Get and Stay Actively Involved! 

Open your mouth about Sickle Cell Disease

 

If we continue to be silent and unseen:

People will continue to think it is cured,

Sickle Cell will continue to be ignored

and more newborns will be diagnosed!

Let people know about SC Trait and the challenges that some of us have,whom have the trait!  Ask people to get the simple blood test, if they don't know if they are a SC Trait carrier

Be seen and heard all of the time!

Let people over hear you talking about SCD!

Make and wear t-shirts about Sickle Cell

Let people know what we need from them!

Explain why we need blood and marrow donors!

Refer people to this site!

 

Work the booths/tables at Community Health Fairs!

Go with your Hospital Blood Donor Center on their drives!  Talk with, educate the donors and thank them for their blood donation.

Become a Marrow Ambassador Volunteer!  Go out into your community, educate and register marrow donors!

 

Plan and hold awareness activities:

Every June 19th World Sickle Cell Day

September for Sickle Cell Disease Awareness Month

Whenever and wherever you can.

Fight for a cure: 

Support your local Sickle Cell Foundation and Programs focused on finding a cure!

 

 Learn the REAL:

Read and Research

Return to this site often!

Say to the world:

"Give me what I need, not what you want me to have!"

Our Wish List From Supporters and Visitors

First assist your local Sickle Cell Foundation, then if you could, help us continue helping all of us by please making a commitment to donate $1.00 a month*

Send a dollar or make checks or money orders out to:  Nita Thompson, Health Advocate

Please mail it to:
African American Blood Drive and Bone Marrow Registry
for Sickle Cell Disease Awareness
P O Box 1275, Inglewood, CA 90308-1275

For more information please contact us at:
(323) 750-1087, E-mail:
AA4SCDAwareness@aol.com

*Please note that we are NOT a non profit organization yet, so your donations are NOT tax deductable, however, also note that we do what we do for our entire Sickle Cell community and it comes out of our household budgets, so we appreciate any assistance.

Participate in  See Sickle Cell ~ Say Sickle Cell

The See Sickle Cell ~ Say Sickle Cell Campaign/Movement discription is on the following page.

Upcoming Events

Friday, Jul 21 at 8:00 AM - Tuesday, Jul 25 4:00 PM
Tuesday, Jun 19 All Day
Saturday, Jul 21 at 8:00 AM - Wednesday, Jul 25 4:00 PM
Wednesday, Jun 19 All Day

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