Sickle Cell Disease Awareness

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

Needs a Marrow Match NOW!!!

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. . . . 

Videos that tell you more about marrow donations

 ABC News about Bone Marrow and Minorities Videos and Article on Sickle Cell and Leukemia - 9 2011

http://abcnews.go.com/Health/florida-girl-sickle-cell-disease-suffers-stroke-age/story?id=14500849

6:49 mins from WSB Atlanta Channel 2 news on African American Marrow Donors and Recipients:   http://www.wsbtv.com/video/23505060/?taf=atl

The following patients need or needed a marrow or stem cell transplant.  Read their stories:

 

 

 You can see Taylor's story thanks to Jocelyn Dorsey and Channel 2 for the presentation on marrow and stem cell donations. Please view and pass on.

 

Read her own words here:  http://www.ajc.com/opinion/donating-the-gift-of-550809.html?sms_ss=email

 

  

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What will it take for us to step us and help our people?  

How many more of us must die?

 

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4 The Love of Sam Project ~ RIP

 

 

It is with great sadness it is reported that Sam made her life transistion Sunday, May 22, 2011.

 

 

Samantha Dancer is awaiting a life saving bone marrow transplant, and we need your help.  Samantha turns 21 this month and we are celebrating her birthday at Westminster Presbyterian Church at 1787 No. Lake Ave., in Pasadena, on Jan. 21, 2011, from 6-11 pm.  Tickets are $21.00 and all are welcome.

 

However, as this is primarily an effort to raise much needed funds, if you are unable to attend we welcome your donation of $21.00 or more.  You can contribute on line at http://www.cotaforsamanthad.com/ or mail it in to the Children's Organ Transplant Assn., 2501 West Cota Dr., Bloomington, Indiana, 47403.  Your donation is tax deductible and will go directly for Samantha's transplant related expenses. Contact me for tickets - (818) 919-2961.

 

Update:  Samantha found a 10 out of 10 marrow matched donor, so she is waiting until the end of April 2011 when she will be having her marrow transplant!!!  Please keep her and her family in your prayers.

 

 

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Regarding Natasha ~ RIP

Natasha, was a warm, compassionate, summa cum laude graduate of Cornell University. She never met a person she would not call a friend, traveled the world having studied in Ireland and Spain while in college and taught at the Cornell Weill Medical College in Ad Doha, Qatar after graduating in 2005. She enjoyed the Middle East and fell in love with the kindness of the people and the richness of their culture. She, however, developed leukemia while teaching organic chemistry lab and had to return home when she became too sick to continue teaching. Leukemia is a deadly cancer that grows in the bone marrow.

Natasha beat the disease on two separate occasions, and we have learned a lot about the strengths and weaknesses of her treatment. The most important fact is that her chance for a cure is directly related to her ability to find a genetically matched bone marrow donor in the NMDP registry. The problem is that she is the child of an African American father and an Irish American mother, and it is almost impossible to find a perfect match in the NMDP registry if you’re Mixed Race. This flaw, no matter how complex the reason, is devastating when you need a bone marrow transplant to live.

Become My Hero was created in 2005 to find Natasha a bone marrow donor. We registered thousands of people, however, we were not able to find a single donor that was a genetic match for her among the 17 million people in the global donor registries or via our own efforts when she was initially diagnosed. All seemed lost until Natasha’s doctors decided to go with a experimental procedure and were able to find two newborn babies with umbilical cord blood stem cells that partially matched her cells. As a consequence, she became the first adult cancer patient to receive a cord blood transplant in Kentucky.

The transplant was cancer free for more than a year when she started as a first year medical student at Yale. She remained cancer-free until February 2009 when she relapsed. We have since learned that immune cells from cord blood do not effectively recognize cancer cells, and thus cannot kill the residual cancer cells left after the patient’s last chemotherapy. This may be due to the drug induced immunosuppression of transplant recipients and/or to the likelihood that the immune system is weakly responsive until a person is about 8 years old. Repopulating an adult with stem cells from a baby as opposed to bone marrow cells from an adult, therefore, makes them immunologically an infant. These may be the primary reasons that cord blood recipients, like our daughter, relapse.

We were able to locate a bone marrow donor in Germany in June - that’s one donor in almost four years and more than 17 million potential donors in the global bone marrow donor registries. It is a well known fact that Mixed Race people and many racial and ethnic minorities do not fare well when given unrelated allogeneic bone marrow transplants, especially when the donor is is not of the same race. It was a very difficult decision given that Natasha’s donor was Caucasian, however, she opted to have a bone marrow transplant rather than anothercord blood transplant. She received her transplant on July 3rd and fought valiantly until she died of transplant related causes on August 12th.

Natasha’s plight is emblematic of what happens to almost every hard-to-match person that needs a stem cell transplant to survive leukemia. To make matter worse, stem cell transplants are now used to treat more than 70 diseases besides leukemia. In fact, there is a 1 in 217 chance that you could use at least one stem cell transplant in your lifetime.

To right this situation, our family has started “Natasha’s Place - The National Minority Cord Blood Bank and Research Institute.” The state of the art storage facility, which is managed by Cryobanks International under the direction of Dr. Tedd Collins, Natasha’s father, is the first in the world to provide private, semi-private and public cord blood banking exclusively for racial and ethnic minorities. It’s research institute focuses on two areas - diminishing the innate graft verses host response of cord blood stem cells and training cord blood stem cells to kill cancer cells before they are transplanted or following an immunization with the patient’s tumor cells.

 

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Regarding Project Michelle ~ RIP


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/

 

 

MICHELLE WAS 26 YEARS OLD:

She was a healthy and happy daughter, sister, and friend until she was unexpectedly diagnosed with Leukemia, a cancer of the blood. Doctors don’t know how or why people get this disease, and it can happen to any of our loved ones. Michelle has been bravely fighting for her life for over two years. Thanks to the generosity of registered bone marrow and cord blood donors, Michelle received a stem cell transplant in October of 2008.

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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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