Sickle Cell Disease Awareness
A candle loses none of its light by lighting another candle!
How You Can Help
This page includes:
Register your Marrow and or become a Volunteer Ambassador
Donate Your Blood and or Become a Blood Buddy!
Help Your Local Sickle Cell Foundation or Organization
Become a 1 VIP Advocate! ~ One Voice Interested and Participating
Register your Marrow and or become a Volunteer Ambassador
Directions for Joining the Registry Online:
- Go to Bethematch.org
- Go to join registry
- You will be asked a series of questions
- You will be prompted to fill in the consent form
- You will be sent a swab kit in the mail and will need to mail the swab kit back to the address already provided on the envelope.
We encourage individuals to become or organizations to have people trained as a Volunteer Ambassador and register marrow. Please contact Shelley D. Baker, Account Executive who will train.
Be The Match Registry,
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
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!
Become a 1 VIP Advocate! ~ One Voice Interested and Participating
Get and Stay Actively Involved!
Open your mouth about Sickle Cell Disease
If we continue to be silent and unseen:
Sickle Cell will continue to be ignored
and more newborns will be diagnosed!
Let people know about the SC Trait challenges!
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 AB52
Learn the REAL:
Return to this site often!
Say to the world:
"Give me what I need, not what you want me to have!"
- - - Nita T. - - -
