Congratulations to POL Board Member for Starting Bone Marrow Registry in Nigeria!

Yes you read that correctly Nigeria! Olympic hopeful Seun Adebiyi who is a native Nigerian was diagnosed with Leukemia just one month after receiving his law degree from Yale University. Doctors told him he needed a bone marrow or stem cell transplant to survive. Unfortunately he had no matching donor in his family or on the registry and his best chances of finding a match was from a fellow Nigerian. So Seun did what was unthinkable at the time. He held the first bone marrow drive ever in Nigeria. He has since received his transplant, resumed his Olympic training, and registered thousands of donors to the registry here in the US before starting his own.

The new Bone Marrow Registry in Nigeria (BMRN) launched February 24th, 2012 is only the second bone marrow registry in Africa and will give hope to so many people of African descent worldwide who need a life saving transplant. Seun sits on the board of directors for Preserve Our Legacy, INC as a legal adviser. Congratulations Seun, we are glad you are on our team!

Seun Adebiyi at a photo shoot promoting the POL "Got Bone Marrow?" fundraiser T-shirts
photo by Brett Melius

Is There Such Thing as a Half-Match?

There sure is but it's not available everywhere… yet. Over the years doctors and scientists have been hard at work looking for new ways to expand the donor pool. Recently they discovered that manipulating some of the procedures during the transplant process can produce successful results for related donors who have at least 50% of the identical HLA genes as the patient.

This is done by reducing the amount of chemotherapy administered before the transplant which is just enough to prevent rejection of the donor cells. Three days after the transplant doctors administer another chemotherapy drug called cyclophosphamide which helps to train the donated cells to accept their new body.  Only some hospitals across the nation offer this treatment, however if continued success is seen most patients with a healthy sibling, parent, or child should have a suitable matching donor.

According to Johns Hopkins, trials have seen similar success rates to that of fully matched transplants. Also according to their website “Johns Hopkins is currently the only center offering this type of transplantation for chronic leukemias, multiple myeloma and myeloproliferative disorders; other centers consider this treatment only for acute leukemias or lymphomas”

This is also great news for sickle cell and senior aged patients because of the reduced regiments of chemotherapy treatment.

This Mission is International!

What Preserve Our Legacy does can have implications world-wide. Most bone marrow registries around the globe are connected, meaning people who register may also have the opportunity to save the life of someone abroad. Watch how an African American New York postal worker saved the live of a man from England who is of mixed descent.

Visit msnbc.com for breaking news, world news, and news about the economy

Why I Choose to 'Preserve Our Legacy'

by Akiim DeShay

I remember the day I was told the chemotherapy wasn’t working. My doctor, who had previously been confident that I would go into remission after the first round of chemo, leaned up against the counter. Rather than standing or sitting directly across from my wife and I, she choose to position herself farther to the right as if to be not fully engaged. I remember as she folded her arms and in a tone I was not used to hearing told me that 40% of by bone marrow was still Leukemia. I remember her telling me that she was referring me to another doctor because my best chance was a bone marrow transplant. I don’t remember much else, because her voice began to fade away although she kept speaking. As reality began to set in I fell deeper and deeper into a trance-like state. It reminded me of the first time another doctor in the ER told me I had Leukemia but this time there were no tears. I went home and lay in the bed and stared into space until I fell asleep.

When I woke up I felt more determined than ever and by the time I went to visit my “bone marrow” doctor as I call him, I was greeted with more disparaging news. In an effort to stay positive I did no research on bone marrow transplants. So I naively believed this would be something that would be offered to me and it would be up to me to decide whether or not I would accept this treatment or choose something else.  Needless to say I was foolish. After he described to me what a bone marrow transplant was and I agreed to the procedure he leaned forward in his seat with his elbows almost resting on his knees. While staring me directly in my eyes he revealed to me that it wasn’t really a choice. It was only a possibility. Since I only have one sibling there was only a 25% chance of me finding a matching donor in my family. And that my chances of finding a donor on the national volunteer bone marrow registry was only about 25% because there are not enough African American donors.

For the first time I realized that I had a 75% chance of dying without treatment because I am Black. This was a reality that was hard to swallow. I had to reconsider my mortality and revisit my ‘If I die’ plan of what type of essay or video I would write or record for my newborn son and four year old daughter. What were the most important things they should read or hear from their father who they would have no memories of when they grew up?

Three weeks later while receiving my third round of chemo I remember the phone call and my wife’s words of excitement “She’s a match!” My sister Rashaan was a perfect match. I received my transplant on Good Friday 2004. But after all of that it wasn’t until 2007 when I was forced to revisit the truth for so many others who did not get the same news I did. I volunteered at a bone marrow drive for a preacher who had the same leukemia I did but had no match. This is when I began to think about that 75% figure again and decided to do something about it. By the way, that preacher Pastor Avril Royal never found a match and passed away a year later.

Akiim DeShay is a proud board member of Preserve Our Legacy, INC and runs the web site BlackBoneMarrow.com

Preserve Our Legacy Featured on a VH1 Episode of Basketball Wives

VH1 recently aired episode 3 of Basketball Wives which is now in its fourth season. During this episode (17:08) Royce Reed sat down with Preserve Our Legacy co-founders Brett and Shana Melius and New York City councilwoman Inez Dickens. Shana discussed with Royce the reason behind POL’s mission to increase awareness of bone marrow and umbilical cord donation in the minority community.  She asked her to host a fundraiser for POL and Royce cheerfully agreed.  

When the show gets to the actual event (27:31) Royce is almost moved to tears when she says…

 “Just to know that I can become registered and save a life means the world to me. What other feeling as a human is greater than that"

Basketball Wives (Season 4)

On the VH1 blog Royce recaps the episode where she dedicates a significant portion of her post to discuss the importance of this Preserve Our Legacy’s mission to  increase awareness of bone marrow and umbilical cord donation in the minority community. She says  

“I became a part of this organization because I have a four year old, and after hearing about Jaden whom the organization pushed for Jaden’s Law and the Jaden Hilton Initiative I was brought to tears.”

“…..it literally takes about 5-10 minutes out of your life to become register to SAVE A LIFE OF SOMEONE ELSE. What else could be more rewarding!”

Discovering the Types of Donors?

Due to the lack of available marrow donors, doctors have been hard at work over the years developing ways to increase the donor pool for those in need. This includes using innovative techniques to finding alternative sources of marrow stem cells. The following is a list of the five types of donors currently used for marrow transplants including the new Half-match technique that is only performed at select hospitals. On the next few posts we will discuss these in more detail.

PREFERRED DONORS

HLA-matched sibling donor

The optimal donor is a histocompatible (HLA) matched sibling (brother or sister). Because siblings can receive different HLA genes from their parents there is a one in four, or 25 percent, chance that any brother or sister will have identical HLA genes as the patient.

Matched Unrelated Donor (MUD)

A MUD donor is a volunteer located on the bone marrow registry who has matching identical HLA as the patient. This is a preferred donor if there is not a sibling match.

ALTERNATIVE DONORS

Umbilical Cord Blood (UCB)

UBC are stored cord blood collections retrieved from healthy baby births. The cord blood, which is normally thrown away after a baby is born, contains a large number of stem cells.

Mismatched Unrelated Donor (MMUD)

A MMUD also known as partial match is a volunteer located on the bone marrow registry with at least 66% of the identical HLA genes as the patient.

Haploidentical (Haplo)–related donor

A Haplo donor sometimes called a half matched related donor is a parent or sibling with 50% of the identical HLA genes as the patient.

Kevin Johnson, Sacramento mayor and former NBA star pledges to help 11 yr old needing a bone marrow donor

Just four weeks ago Lee Evans who is an African American sixth grade football player in Sacramento, Ca was diagnosed with acute lymphoblastic leukemia. Doctors have determined that he will eventually need a bone marrow transplant. Well Lee received a pleasant surprise when Sacramento mayor Kevin Johnson visited him in the hospital and pledged to help spread the word. Watch the video from KCRA... HERE

This is yet another example of why Preserve Our Legacy has been so dedicated to our cause so that more men, women, and children will have access to this life saving treatment.