Sickle Cell Disease Awareness
A candle loses none of its light by lighting another candle!
History and Who We Are
This page includes:
Just keeping it real! History of why we do what we do Volunteering Why do we work so hard? Questions For You: IN MEMORIAL HAD A TRANSPLANT AND NOW SICKLE CELL FREE!!!
There is so much to learn! Take your time. We'll be here.
Just keeping it real!
African American Blood Drive and Bone Marrow Registry for Sickle Cell Disease Awareness
"Grassroots" Volunteers Advocating for Sickle Cell Disease Empowerment
We advocate for the human race, however, I am who I am . . . a racially mixed labeled “African American” Mom, whose child is diagnosed with Sickle Cell Anemia.
This is my motto: "I am never alone. If no more than I, the “WE” is me, God, Jesus Christ and the Holy Spirit!” Plus, I always check in and ask for the assistance of others, so no decision is really ever made by me alone. It really is all about the team work!
"We keep it going and others join in when they can!" - - - Nita T.
Together, persons diagnosed with Sickle Cell Anemia, their family members, and supporters, go out to the highways and byways to educate and inform anyone who will listen about Sickle Cell Anemia and why it is so important that we encourage people to donate blood and register their bone marrow!
History of why we do what we do
First, I went to the parent support group meetings sponsored by the Sickle Cell Disease Research Foundation. We would meet, comparing notes, exchange experiences, learn information, but find no solutions. It got rather depressing. I continued to go, but so some of us decided to get active and do more! Next, my first personal experience dealing with a blood transfusion was almost unreal!!! My thoughts were: Would my baby live? Would he get blood? Would it match? Would it arrive in time? After that experience one and only, I found out that some patients were being transfused every 2 weeks, 3 weeks or 4 weeks so they would not have a stroke. Wow, I thought these families have to go through what I had to go through once! I had to do something. Soon after, I had the chance to work with CHLA for a blood drive. They clearly expressed their desire to encourage African Americans to donate, but it just was not “politically correct” to call it an " Right after that drive, Kathy Reger, from the We were simply created out of necessity! No, we are not militant, we are just patients, family and supporters wanting our love ones to survive this deadly disease and have a chance at life . . . I (Nita T.) took the lead as Chair, because of my personality, I only had "one" child, my transfusion experience, and it's my calling! We started off calling ourselves the “ “Awareness” was added after community members kept saying, “We haven’t heard about Sickle Cell since the 70’s when it was in the news . . . we thought it was cured!” Lastly, “Bone Marrow” was added when we learned Marrow Transplants could cure Sickle Cell Disease, but minorities were very low on the registry. We added "Bone" because conversations went like this: “Are you a marrow donor?” “What?” “Are you a marrow donor?” “What?” “Are you a Bone Marrow Donor?” “Oh!” . . . thus, “
Volunteering
SCD Awareness, Blood and Registering Marrow
You can often find one or more of us at health fairs, walks, runs, festivals, golf tournaments, around the halls of Children's Hospital of Los Angeles (CHLA), yearly at the Black Business Expo, and any other community gatherings we can get into!
We represent, put out information for, or directly work with the Blood Centers that have the most Sickle Cell Patients. We also work with our local Sickle Cell Foundation of California and KIS Foundation.
We tag along with the CHLA Blood Donor Center during blood drives, talk with, and thank the people who donated blood and register marrow.
Since 1999, two of us are trained Ambassador Volunteers for "Be The Match" National Marrow Donor Program and register marrow donors.
We are on committees, go to meetings, research and connect online, advocating during legislative visits, campaign and advocate for awareness, whatever we can and need to do in order to make a difference and save the lives of our loved ones and others, one by one.
We participate on the local, state, and national levels!
Why do we work so hard?
- To prevent patients, family members, and hospital staff from worrying about whether or not African American blood will be available that will match the African American patients when transfusions are needed. However, it still happens that sometimes there is no blood, it is not the best match, or there is only enough for a partial transfusion.
- To help people understand the importance of donating blood, bone marrow, and newborn umbilical cords to blood banks, marrow registries, and public umbilical cord storage banks.
- To inform all people that Sickle Cell is not just a Black/African American issue, but a global issue for people of all races. Even if it is not about Sickle Cell, people come down with all kinds of illnesses and need the same kind of help!
- To help save a patients' life who has been diagnosed with Sickle Cell, Leukemia, Thalassemia, *Multiple Myeloma, and Lymphoma. All of these illnesses need blood, and can be cured by bone marrow or stem cells. . . . if there is a marrow match and if the patient can withstand the procedure.
*Multiple Myeloma is bone cancer and affects more African Americans than any other race. It can be cured with Stem Cells ~ http://www.leukemia-lymphoma.org/all_page?item_id=7032.
People always ask,
“Isn’t donating marrow painful?”
I say to them,
“A few hours of pain or being uncomfortable that you can get over doesn’t compare to the pain of loosing a loved one-- especially when their life could have been saved if someone had registered and donated their marrow. That kind of pain lasts a lifetime!”
“Wow . . . What does it take to get people to understand?
It’s not about us, it’s about all of us!”
You never know when it could be you or yours!
Questions For You:
When is the last time you thought about or heard?
“I thought Sickle Cell was cured?”
"Only Black people have Sickle Cell Anemia!"
OR
“If it’s such a major health concern, why isn’t it in the news like it was in the 70’s!?!”
IN MEMORIAL
IN MEMORIAL
Laniel Anderson
Melanie Anderson
Marie Arbuckle
Calvin Bell, 40 (brother of Vanessa Bell Calloway)
Anthony Baptist
Cherlynn Bowman
Tia Bright, 40
Laura Caldwell
Jolind Clark
Josie Cook, 76
Kenneth Dwane Cooks, 49 (6/30/60 – 7/5/09)
DeJanae Dixon, 16
DeJanette Dixon, 9
Deidre Dockins
Kathryn “Kathy” Dunn, 46
Debbie Espino
Gerald Ray Gendrett, 22
Jan Dafina Freeman, 56
LaBrent Harvey
Araceli Hernandez
Mark Hull
Brandon Johnosn
Matthew Johnson
Felecia
Portia Justice
Curtis Lipkins
Juvenal Lorenzo
Jamala Mathis
Bridget Bailey Meier
Chloe Minor
Stephanie Mulkey
Marcus Pitts
Yorika Powe
Abigail Quist
Diamond
Roshaunta Rose
Patrick Sinclair
Wathinia Thomas
Anthony Venters
Angel Washington
Quijah Weeks
Deborah Black -White (WHS Homecoming Queen)10/22/09
Scott Zuniga
Jane ?, 28 (3/29/81- 8/28/09)
HAD A TRANSPLANT AND NOW SICKLE CELL FREE!!!
Received Bone Marrow Transplant and Sickle Cell Free
Amari Dawson, 07
Paziley Jenkens
Austin Jones, 8-8-03
Pamela Newton, 06
Olufeyi Ogunyemi, 9-91
Travis Washington, 8-5-09
Received Stem Cell Transplant and Sickle Cell Free
Natasha Dussard, 7-04
Received Un-related Donor Transplant and Sickle Cell Free
Keone Penn, 12-12-98
(Name and date/year of transplant)
