Sickle Cell Disease Awareness

As I said before, "We work so hard to help save a patients' life who has been diagnosed with Sickle Cell, Leukemia, Thalassemia, Multiple Myeloma, Lymphoma and the many other illnesses that need blood transfusions, and can be cured by bone marrow or stem cells. . . . " 

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Meet Natasha Collins.  Read her full story at http://www.news.cornell.edu/stories/May09/CollinsDonor.html

Subject: Re: World Sickle Cell Day, Activities and AB52

Date:  5/2/2009 1:04:00 P.M. Pacific Daylight Time

From:  janice.chang@gmail.com

To:     MsStar4U2@aol.com

CC:     aprasad413@gmail.com

Hi Nita,

It is good to hear from you and glad to see all your efforts coming to fruition! I spoke with one of our Project Michelle volunteers the other day, and she brought my attention to a woman named Natasha Collins who had been battling AML (Acute myeloid leukemia) but recently relapsed. She is the same age as Michelle, 26, is a Yale Medical School student, and is half Caucasian and African American. Time is running out for her to find a marrow match. We have been supporting a lot of A3M drives that target the Asian community, but I was wondering if you had connections to any groups that target the African American community for marrow registration, or know of any upcoming marrow drives.

I have copied our volunteer, Amitha, on this email. Any suggestions you could give us would be much appreciated.

Take care,

Janice

 UPDATE ~

Regarding Project Michelle

It is with deep sadness that I'm telling you about Michelle Maykin's passing last Friday, July 24, 09. Diagnosed in February 2007, Michelle and the efforts of Project Michelle has since registered close to 20,000 people! Their novel efforts of outreaching via various forms of media awarded Project Michelle the NMDP's Excellence in New Media Award in 2008. Michelle's positive spirit and superhuman strength has touched and will continue to inspire the lives of patients, the NMDP staff, and strangers all over the world. Please keep Michelle and her family and friends in your thoughts and intentions.
        Website: http://projectmichelle.com/

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II 

I'm not understanding . . . I guess the question I really want answered is,"Why do people have to beg?"

For any one of the many people who have been diagnosed . . .  

Please every life is worth saving . . . .

and will be missed if they can't find a match!

They need you to make the difference . . donate, register & be the light, please!

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Friday, August 08, 2008 12:11PM Young Hayward Boy Desperately Needs Marrow Donations OAKLAND, Calif. (KCBS)  -- A bone marrow drive was held Friday to find a match to save the life of a little Hayward boy, who is counting on the African American community to step up and register. Three and a half year old Stephon Williams was diagnosed with a rare blood disease.

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UPDATE

JASMINA DID HAVE A MARROW TRANSPLANT!!! 

We are in prayer that it worked!

Satuday, April 4, 2009 - Trenton, NJ:  Jasmina was diagnosed with a rare and aggressive form of leukemia on January 20th, 2009. Her doctors immediately determined her only chance for survival is a bone marrow transplant.

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September 4, 2002 Doctors seek African American bone marrow donors for infant with rare disorder  The best chance for a cure for a ten-month-old Chicago area boy may be a bone marrow transplant -- but his doctors have not yet found a compatible donor and are asking the African-American community to help.  Jacob Davis was born with adenosine deaminase (ADA) deficiency, a disorder so rare that he is the only child in the Chicago area with this disease. As few as 10 to 20 people are diagnosed with ADA in the United States each year.

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African-Americans are dying for bone marrow donors      - a call to action

When I recovered from the shock of learning that my Mom had acute myeloid Leukemia, I set to work on learning more about it, and trying to find what part I could play.

It was evident early on that my Mom would need a bone marrow transplant to survive more than one or two years. AML is a vicious disease that can only be repressed by intense chemotherapy. It comes back, and the chemo treatments quickly lose potency. So I saw the part I would play, and knew it would be a lifetime endeavor.

With the help of Pat Conlee of the National Marrow Donor Program, I began to learn about the bone marrow registry. I worked with Conlee, my Father and friends and family to put together a bone marrow drive for my mother in Victorville, Calif. But I knew that was not to be a one-time effort, and that the NMDP needed help from wherever it could find it.

As I learned about the NMDP, one fact struck me extremely hard. For Caucasians in need of a bone marrow transplant, 88 percent find a suitable donor. For African-Americans, that number tumbles to 60 percent.

While any person of any race can be a suitable person for anyone in need, the simple fact is this: ethnicity matters when it comes to bone marrow. A Caucasian person has a much better chance of getting a match from another Caucasian. An Asian person has a much better chance of being matched with another Asian. An African-American has a better chance of being matched with another of African descent.

According to the NMDP, there are just 11 million people on the bone marrow donor registry. And that’s not in the U.S. That’s in the world. In the U.S., there are five million white people on the registry. There are 500,000 blacks. There lies the difference between the 88 percent and 60 percent figures.

This is a call to the black community. The National Marrow Donor Program needs you. And those of African descent need you even more. They are literally dying for a better representation of blacks on the bone marrow registry.

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                                                    In December, Townsend - of Montreal - was told that he had AML, as well as a disorder called monosomy 7. He was told he needed a bone marrow transplant to survive. He was also told that due to his African-Caribbean heritage, his chances of finding a donor were much less than if he were white.  Townsend did not waste his time with self-pity. He immediately began to champion the cause, and his efforts to get more blacks on Canada’s bone marrow registry have been covered in newspapers, radio and on television. He is a true inspiration, going so far as spending days working to get his message out while he is receiving chemotherapy. And he is still without a matching donor. His site - HealEmru.com - tells his story and has valuable information on how one can get on the bone marrow registry.

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 June 13, 2008 Eunique Darby, 14, was 8:10AM diagnosed with acute lymphoblastic leukemia five years ago. She's relapsed after two chemotherapy treatments. In February, doctors told her mother that bone marrow transplant is her only hope for a cure.

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If you can have a baby or if you can find a match:

Olivia, Quinnlyn and Madison Tate enjoy an outing to the park. . . . Then there are the trips to Fairview Children's Hospital two to three times a month for follow-up appointments and blood transfusions because both Madison and Olivia have sickle cell anemia, a potentially life-threatening genetic disease found primarily in people of color. The only potential cure is a bone-marrow transplant.

After suffering several strokes caused by the disease, Madison had a bone-marrow transplant in 2004, which failed. That's when doctors told the Tates the only hope for Madison was a sibling bone-marrow match. Her sister Olivia was ruled out because she was sick, too. Their only recourse: Have another baby.

The Tates underwent in vitro fertilization, and tested more than 20 of Yalonda's eggs before they found one free of the sickle cell trait. Baby sister Quinnlyn was born in November of 2005; six months later, stored stems cells from her umbilical cord were used to save Madison's life.

Getting Quinnlyn here proved to be anything but normal from beginning to end. An induced labor left Yalonda in intensive care for three days and unable to have any more children.

'I didn't hesitate at all'
Looking back, Yalonda says, "I didn't hesitate at all. This is what we had to do. The end result was great, the process was hectic."

Madison is now considered to be in remission, but the Tate family saga is far from over. Olivia's condition has since progressed to the point where she, too, needs a bone-marrow transplant. The Tates turned to the National Marrow Donor registry with the hopes of finding a donor, knowing that the odds were against them. Most of the people in this country who have sickle cell anemia are, like the Tates, African-American, but according to the National Marrow Donor Program, only 2 out of every 10 African-Americans who search the national bone marrow registry for a donor actually find a match.
 
This time, however, luck was on their side. After just one month on the national registry, not one but two donors were found for Olivia, one of them a perfect match. The Tates were amazed at their good fortune.

"We were told that there is apparently a grouping of people out there that match our DNA," said Gary.

Olivia is scheduled for her transplant this July at the University of Minnesota.