Sickle Cell Disease Awareness

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

Our 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

A Southern California "Grassroots/Ground floor/in the Trenches Group" Volunteers  - Advocates - Educators

 for Sickle Cell Disease and Trait Empowerment 

We advocate for the human race, however, I am who I am . . . a racially mixed labeled “African American” Mom, daughter, sister, friend whose focus is on people in our Sickle Cell Community. 

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, we are part of our Sickle Cell Community, persons diagnosed with Sickle Cell Anemia, their family members, and supporters.  We go out to the highways and byways to educate and inform anyone who will listen about Sickle Cell Disease and Trait.  Also, why it's so important that we encourage people to donate blood and register their bone marrow! 

http://www.youtube.com/watch?v=zyoKRv4OzwU&feature=player_embedded

Thank you Phyllis for the Shout Out on YouTube!!!!

History of why we do what we do

First, some went to the parent/family 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.  We continued to go, but some of us decided to get active and do more!

Next, we 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 "African American Blood Drive."  Yet, the focus was on getting African American blood donors for African American patients.  

Right after that we were invited to a press conference hosted by CHLA Blood Center.  In that room 14 Southern California Clinics/Hospitals that transfuse Sickle Cell Patients were represented.  They were speaking about the great need for blood donors, especially for SCD patients!  They were on TV just about begging for blood donors!  The representatives were from Cedars-Sinai Medical Center, Childrens Hospital Los Angeles, Childrens Hospital Orange, City of Hope, Good Samaritan Hospital, Harbor/UCLA, Kaiser Permanente, LAC/USC Medical Center, Loma Linda Medical Center, Long Beach Memorial Med. Ctr., Northridge Hospital Medical Center, Providence Health System, Ralph M. Parsons Blood Donor Center, SD/USC Medical Center, UCI Medical Center, and UCLA Medical Center.  From that point on . . . those events were the sparks that ignited the flame.

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 to live their best life . . . 

We started off calling ourselves the “African American Blood Drive for Sickle Cell Disease.” 

“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, “African American Blood Drive and Bone Marrow Registry for Sickle Cell Disease Awareness"

SC Awareness: Advocating / 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.

In 1999, two of us were 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?”

We say to them,

The truth is it is NOT painful, because it is a surgery (not like open heart surgery, but it is a medical surgicl proceedure) and the donor is under anesthia if they need your marrow. It is taken out of the hip area, it has never come out of the spine (that's a spinal tap!).  More often they don't even need your marrow, they only need your adult stem cells that's in your blood!  So it's just like donating blood, but more like donating platletts, because they filter out and keep your stem cells and give you back all of your other blood properties.

“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 ~ Remembering our Loved Ones . . . . .

Sometimes people think that children diagnosed with sickle cell as wonderful children who deserve to grow up.   When they grow up, adults diagnosed with sickle cell are often looked of as people who are only drug seekers when they request assistance from hospital staff when in a pain crisis.

The thing about it is, “Sickle Cell is so much more than a pain crisis!”

Well, our loved ones, friends, parents, children, co-workers, are people that held jobs and did amazing things!!

 

We recognize the contributions they made, so everyone knows that their lives were and are not in vain . . .

 * 

Lucius Aiken

*

Dail L. Alberty

*

Xavier Alexander

*

Darrell Allyne

*

Laniel Anderson

*

Melanie Anderson

*

Regina Andrews (3/31/1968- 3/12/2011)

College Student - Just Graduated

*

Ellen Anthony, believed born in 1885,

Public records reported no birth or death, a cook and housemaid

*

Linda Antrum

*

Marie Arbuckle

*

Alana Archer

*

Kenyon Archer

*

William Artis

*

Rodrick Asberry

*

Vanessa Baker

*

Anthony Baptist

*

Vanessa Baker

*

Clayton Barnes ~ Coach

*

William Todd Beach

*

Calvin Bell, 40

(Brother of Vanessa Bell Calloway)

*

Ona Berkeley-Gaither

*

Bertha ?

*

Roderick Wayne Bing

*

Deborah Black-White (10/22/09)

‘76 GWHS Homecoming Queen

 

*

Joann Black

*

Cherlynn Bowman

*

Erick N. Bradley

*

Yesenia Bridges

*

Tia Bright, 40

*

Perry Briscoe

*

Brett Brooks

*

Keith Brooks

*

Ashley Brown

*

Ralph Coleman Brown Jr.

*

Asheley Bruce

*

Yokiesha Bryant

*

Denise Burrell

*

Andre C. Byrd

*

Brehelia Caesar

*

Laura Caldwell

*

Roy E. Canton

*

William Captain

*

Jolind Clark

*

Linda Collins

*

Mr. Ansara Collin

*

Josie Cook, 76

SCDFC Board Member

*

Olin Cook, Jr.

*

Kenneth Dwane Cooks, 49 (6/30/60 – 7/5/09)

*

Ellouise Coyne

*

Samantha Dancer (1/1989 – 5/22/11)

*

Marquis Daniels

*

Craig L. Davis

*

Herbert E. Davis

*

Miles Dewey Davis III (5/26/26 – 9/28/91)

 American jazz trumpeter, bandleader, and composer

*

Belinda Dean

*

Leona Dehaney, 18

*

DeJanae Dixon, 16

*

DeJanette Dixon, 9

*

Lavadia D. Dixon

*

Shirley Dockins

*

Deidre Dockins

*

David Eugene Dong-Yuenmei

*

Dr. Kathleen Dotson

*

Timika “MiMi” Doughty

*

Michael Duke

*

Kathryn “Kathy” Dunn, 46

*

Mrs. Frances Edwards

*

Debbie Espino

*

Thelps Alexander Evans, III

*

Jan Dafina Freeman, 56

*

Sealray Funderburg

*

Amanda J. Gale-Pyka

*

Gerald Ray Gendrett, 22

*

LaTonya Goodou, 22 (-2011), Georgia State University Student

*

Janita Greene

*

Mark Greene

*

Tiffany Griffin

*

Dannelis Guzman

*

Mrs. Handsome Mae Hall

Calvert Hamlet

Elliot Couston Hamlet

 *

Cookie Harris

 *

LaBrent Harvey

Russell M. Haygood

Mary C. Headley

Christine Hearns

George Roger Hentz Jr.

Araceli Hernandez

Jean Hicks

*

Louella Hightower

*

Chandra Holmes-Brainsford

*

Frederick Douglas Holmes

*

Margaret Holmes

*

Vernice Joyner Hopkins (1920-1994), 74!!!

*

Brandon Hubbard

*

Mark Hull

*

Cedric Lawton Huntley

Felicia Denise Huntley-Wilson

*

Dr. Umo Isong

*

Dallas M. Jackson

*

Elaine Jackson

Lisa Jefferson

*

Paul Johnny

*

Ashley Monique Johnson-Patterson

*

Brandon Johnson

*

Kimberlyn Johnson

*

Matthew Johnson

*

Patience H. Johnson

*

Shanequa Johnson

*

Patterson Johnson

*

Ashley M Jones

*

H.C. Jones

*

Melvyn Kyle Jones

*

Walter G. Jones

*

Algernon Jordan III, 5 (9/27/05 – 1/30/11)

*

Felecia Jordan

Portia Justice

Wayne K. Kelley

Charlene K. Kenlock

*

Dorethia Key

*

James T. Lane

*

Arthur Lester

*

Henry Lesure

*

Nicole Lewis

*

Arti Lilly

*

Tesa Lilly

*

Curtis Lipkins

*

Quiyana N. Lloyd

*

Michael Lockett

*

Delores Locklear

*

Juvenal Lorenzo

*

Pete Lorrime

*

Mrs. Francine Lyle

*

Jamala Mathis

*

Lodusky McCowen

*

Bridget Bailey Meier

*

Dwight Eric Middleton

*

Charnell Mims

*

LeJay Robin Miner

*

Chloe Minor

*

Tyrone Mitchell

*

Era Moore

*

Kanetta Moore, 28 ( - 2011)

*

Lubertha Moore

*

Antoinette Morgan

*

Jocelyn Njambu Muhoro

*

Stephanie Mulkey

*

Nichole Yvonne Murphy Braxter

*

Lola Dejoon Murray

*

Dr. Kermit B. Nash, Jr.

*

Isidero Nelson

*

Edward Nixon

*

*Dr. Walter Clement Noel, June 21, 1884May 1, 1916

(Dentist and first USA case study for SCD in the USA)

 *

Kate Obuong, (2007 -2010)

*

Jon A. Page

*

Ivor Balin Pannell, (5/18/64 – 5/5/09)

Sickle Cell Advocates for Research and Empowerment, Inc. (S.C.A.R.E.), Founder

*

Fitzroy Parker

*

Quiyana Nichell Pierce-Lloyd

*

Pamela Pinkney

*

Marcus Pitts Robinson (12/17/67 – 1/9/98)

*

Patricia Portley

*

Kristian Olivia Posey

*

Yorika Powe

*

Tanish Presley

*

Amanda Pyka

*

Abigail Quist

*

Grace Edith Ramsey

*

Roselyn Richardson, 11/13/52 - 12/18/09

Mother, Greeting Cards Merchandiser, USPS Employee, Substitute Teacher

*

Lisa Robinson

*

Diamond Rogers

*

Roshaunta Rose

*

Garland M. Ross

*

Ryan Andre Rudder

*

Vanissa Sampson

*

Melinda Scott

*

Nathaniel G. Shaw, II

*

Marcus Simmons

*

Patrick Sinclair

*

Elizabeth Michelle Smith

*

Eulvon Sheilariesse Smith

*

Tamara Smith

*

Celestine Spriggs

*

Dominique Starks

*

 Terrell Starks 

*

 Antoine V Swann

Terrance N. Talley

*

Anne Taulbert

*

 Keith Allen Taylor

*

Lillian Teague

Georgeanna Tillman (2/6/43 – 1/6/80)

 An original member of Motown's legendary girl group, the Marvelettes

*

Marc Thomas

*

Nicole Thomas

*

Wathinia Thomas

*

Dorothy R. Thompson

*

Tyrcha Thompson

*

Georgeanna Tillman

*

Lamount Tolbert

*

Dewayne R Tryon

*

Otis Uduebor

*

Tamiko Urbino

*

Lakisha Utendahl

*

Anthony Venters

*

Cleopatra Wade

*

Aileen Walker-Simmons

*

Sheila Mae Walls

*

Jay Warren

*

Mrs. Willene Warren

*

Angel Washington

*

Latoya Watson

*

Wendell Watts

*

Joyce L. Webster-Sherrill

*

Quijah Weeks

*

SanTrisha Weldon

*

Lisa Wethers

*

Carlton Williams II (79 – 10/03)

Actor Clinton in "Crooklyn"

*

Nacole Williams-West

*

Paul Williams (7/2/39 – 8/17/73)

A founding member, original leader baritone singer and

choreographer of the Motown group The Temptations

*

Sherri Lajune (Hobson) Williams

*

Shirley Williams

*

Ali "Ollie" Woodson (9/12/51 – 5/30/10)

A former lead singer of The Temptations

*

Dr. Anna Yvonne Wray-Geer

*

Richard Andre Wright

*

Kimberly Dana Zachery

*

Phyllis Zackary–Thomas, 47 (5/9/1964- 3/9/12)

Founder of The SCD Soldier Network

*

Thomas “Scott” Zuniga ~ College Student

 

If you would like to add names to our list of loved ones please feel free to submit their names by email (AA4SCDAwareness@aol.com). 

If you knew any of the people on this list and would like to add information like their dates here on earth, age, something about who they were or what they did, we would appreciate it. 

Each of these people added positively to our society, they were love and are missed!  It is just that our society is opinionated, not factual or understanding when it comes to Sickle Cell Disease!

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)

Upcoming Events

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

Recent Videos

No new videos