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.
Thursday, March 15, 2012
Sunday, March 11, 2012
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
Thursday, March 8, 2012
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"
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!”
Monday, March 5, 2012
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.
Friday, March 2, 2012
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.
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.
Tuesday, January 3, 2012
Preserve Our Legacy Forced by Be The Match to cover cost of registered bone marrow donors
Recently, we were informed that we as a grassroot organization, that receives no federal funding, would have to cover the cost of signing up bone marrow donors. Considering, we established NJ Bill A2168/S2038 - Jaden's Law, we have increased awareness about bone marrow and umbilical cord blood donation within various ethnic communities through out America and the world with the help of various celebrities and major networks.
In 2010, we were informed that the only way we could become a recruitment group for BE THE MATCH we would have to register 1500 donors for the year as a volunteer recruitment group for three years. Even though, we established legislation including the NMDP. We were emailed paperwork, that was different from what our boardmember Akiim DeShay found on their website. In addition in 2010, through various groups we were able to do so, however, we were informed that did not count. In addition, we worked with groups that were compensated for our efforts, meaning BE THE MATCH recruitment groups are paid per donor, which was unknown at the time, but we later found out.
In early 2011, after our appearance on BET we received thousands of calls from potenital donors, BE THE MATCH recruiters, emails and post that our appearance helped them with registering or signing up donors to register. However, we later found out our organization would not receive any credit for doing so, because we were NOT a recognized recruitment group for BE THE MATCH. Therefore, we decided to work with LINK TO LIFE NETWORK, INC (The only African-American Recruitment group for BE THE MATCH). While we thought this would be a perfect partnership and assist in increasing awareness within the African-American and various ethnic communities, unfortunately found out later, it was not in the eyes of BE THE MATCH. This partnership would consist of two minority underrepresented groups coming together and would mean the ability to recruit more ethnic donors, in addition to, increasing the available donors for various ethnic patients in need. Rationally, this would be something good, unfortunately, the result was LTLN funding was cut, which led to only allowing Preserve Our Legacy the ability to register 100 donors for free, anything over 100 we would have to pay $100 per donor, no matter if they are from the priority underrepresented Ethnic groups or Caucasian. However, based on the goal imposed by BE THE MATCH, which we are required to register 1500 people a year to become recognized by BE THE MATCH. While we understand that the economy has made it hard for not-for-profits, however, there are four recruitment groups based in New York State including LTLN, Inc. and LTLN receives the least amount of funding and recruitment goals of the four. Some groups are allowed funding and the ability to recruit 40,000 individuals in one year, while LTLN receives less than 1000 for the year. Even though they are the ONLY African-American recruitment group. New Jersey bill A2168/S2038, Jaden's Law, is historically the only legislation that speaks about educating individuals about bone marrow and peripheral blood stem cells (PBSC). Therefore, we are confused why we could not receive additional funding and increased recrutiment goals to assist in increasing the numbers of the underrepresented. The federal funding states these minority groups should be made priority. Here is part of the legislation H.R. 2520:
(e) Bone Marrow Recruitment; Priorities; Information and Education-
(1) RECRUITMENT; PRIORITIES- The Program shall carry out activities for the recruitment of bone marrow donors. Such recruitment program shall identify populations that are underrepresented among potential donors enrolled with the Program. In the case of populations that are identified under the preceding sentence:
(A) The Program shall give priority to carrying out activities under this part to increase representation for such populations in order to enable a member of such a population, to the extent practicable, to have a probability of finding a suitable unrelated donor that is comparable to the probability that an individual who is not a member of an underrepresented population would have.
(B) The Program shall consider racial and ethnic minority groups (including persons of mixed ancestry) to be populations that have been identified for purposes of this paragraph, and shall carry out subparagraph (A) with respect to such populations.
Therefore, for 2012 if we want to become a recruitment group for BE THE MATCH, we will have to cover 1400 individuals that we register in the amount of $140,000. Unfortunately, due to this new financial burden imposed to us, we will not be able or it will be difficult to register bone marrow donors!
Therefore, we are asking for financial support from our community to help cover these expenses as well as speaking to your local legislator, congress person, city council person or political leader to help us!!
If you are interested in assisting or interviews, please contact me shana.melius@preserveourlegacy.org or visit our website: www.preserveourlegacy.org.
In 2010, we were informed that the only way we could become a recruitment group for BE THE MATCH we would have to register 1500 donors for the year as a volunteer recruitment group for three years. Even though, we established legislation including the NMDP. We were emailed paperwork, that was different from what our boardmember Akiim DeShay found on their website. In addition in 2010, through various groups we were able to do so, however, we were informed that did not count. In addition, we worked with groups that were compensated for our efforts, meaning BE THE MATCH recruitment groups are paid per donor, which was unknown at the time, but we later found out.
In early 2011, after our appearance on BET we received thousands of calls from potenital donors, BE THE MATCH recruiters, emails and post that our appearance helped them with registering or signing up donors to register. However, we later found out our organization would not receive any credit for doing so, because we were NOT a recognized recruitment group for BE THE MATCH. Therefore, we decided to work with LINK TO LIFE NETWORK, INC (The only African-American Recruitment group for BE THE MATCH). While we thought this would be a perfect partnership and assist in increasing awareness within the African-American and various ethnic communities, unfortunately found out later, it was not in the eyes of BE THE MATCH. This partnership would consist of two minority underrepresented groups coming together and would mean the ability to recruit more ethnic donors, in addition to, increasing the available donors for various ethnic patients in need. Rationally, this would be something good, unfortunately, the result was LTLN funding was cut, which led to only allowing Preserve Our Legacy the ability to register 100 donors for free, anything over 100 we would have to pay $100 per donor, no matter if they are from the priority underrepresented Ethnic groups or Caucasian. However, based on the goal imposed by BE THE MATCH, which we are required to register 1500 people a year to become recognized by BE THE MATCH. While we understand that the economy has made it hard for not-for-profits, however, there are four recruitment groups based in New York State including LTLN, Inc. and LTLN receives the least amount of funding and recruitment goals of the four. Some groups are allowed funding and the ability to recruit 40,000 individuals in one year, while LTLN receives less than 1000 for the year. Even though they are the ONLY African-American recruitment group. New Jersey bill A2168/S2038, Jaden's Law, is historically the only legislation that speaks about educating individuals about bone marrow and peripheral blood stem cells (PBSC). Therefore, we are confused why we could not receive additional funding and increased recrutiment goals to assist in increasing the numbers of the underrepresented. The federal funding states these minority groups should be made priority. Here is part of the legislation H.R. 2520:
(e) Bone Marrow Recruitment; Priorities; Information and Education-
(1) RECRUITMENT; PRIORITIES- The Program shall carry out activities for the recruitment of bone marrow donors. Such recruitment program shall identify populations that are underrepresented among potential donors enrolled with the Program. In the case of populations that are identified under the preceding sentence:
(A) The Program shall give priority to carrying out activities under this part to increase representation for such populations in order to enable a member of such a population, to the extent practicable, to have a probability of finding a suitable unrelated donor that is comparable to the probability that an individual who is not a member of an underrepresented population would have.
(B) The Program shall consider racial and ethnic minority groups (including persons of mixed ancestry) to be populations that have been identified for purposes of this paragraph, and shall carry out subparagraph (A) with respect to such populations.
Therefore, for 2012 if we want to become a recruitment group for BE THE MATCH, we will have to cover 1400 individuals that we register in the amount of $140,000. Unfortunately, due to this new financial burden imposed to us, we will not be able or it will be difficult to register bone marrow donors!
Therefore, we are asking for financial support from our community to help cover these expenses as well as speaking to your local legislator, congress person, city council person or political leader to help us!!
If you are interested in assisting or interviews, please contact me shana.melius@preserveourlegacy.org or visit our website: www.preserveourlegacy.org.
HAPPY NEW YEAR 2012 - NEW ACTIONS...BONE MARROW DONORS COMPENSATED
HAPPY NEW YEARS FROM THE PRESERVE OUR LEGACY FAMILY!
I hope everyone obtained what they wanted for the holidays. I wanted to wait until after the holidays to discuss what has been an extreme topic from numerous of individuals that know the work that is done by our company. In December, the 9th circuit panel of three judges voted unanimously to overturn the ruling of the NOTA of bone marrow donors not being compensated.
According to the 9th circuit panel, due to new medical techniques, now,there is an essentially risk-free technique — called apheresis — for obtaining the stem cells not from hip bones but from the arms — the bloodstreams — of donors as they rest for six or so hours in a recliner (retrieved from http://www.newsmax.com/GeorgeWill/Bone-Marrow-Donors-Compensated/2011/12/30/id/422579).
From our perspective and our relationship with Kumud Majumder, we, as an organization, believe that compensation, will definitely increase the level of survival for patients in need. However, many must understand the odds of being a match are still very slim due to the limited number of donors from various ethnic communities. Presently, five ethnic groups, Hispanic, African-Americans, Asians, Pacific Islanders, American Indians are comprised between 28-31% of the National Registry for bone marrow & Umbilical cord blood donation, while Caucasians are between 61 to over 70% of the registry for bone marrow and umbilical cord blood donors. These staggering percentages have been in the same variation for over 20 years (since 1991 joining all groups together for National Efforts). Those from various ethnic diverse groups have increased the least, this is why my husband and I started Preserve Our Legacy to try to make a difference and increasing awareness in such ethnic communities and establish Jaden's Law throughout America.
This new ruling would possibly encourage more individuals to sign up, in hopes of being compensated. Although it is not a direct cash payment, it can be in a form of scholarships, housing allowances, or contributions to charities chosen by donors. The program would initially target potential minority and mixed-race donors who are likely to have marrow cell types that are the most difficult to match(retrieved from http://www.newsmax.com/GeorgeWill/Bone-Marrow-Donors-Compensated/2011/12/30/id/422579). Some believe this would be a wrong motive, however, in the possibility to save anothers life, what other option can be applied. Many are familiar with Jaden's story. In 2006, there was only 4% available for African-Americans. Imagine if this ruling pertaining to NOTA was established, maybe Jaden would be here today, along with the thousands that have lost their lives.
We just want people to be aware that you still have to be a genetic match in order to be a donor. The more ethnic people that register the better the odds of someone finding a match.
Preserve Our Legacy, Inc. has a lot on the horizon for 2012! Branching the Preserve Our Legacy Umbilical Cord Blood program to different states, establishing Jaden's Law in other states, and MUCH MORE to come. For more information about us: www.preserveourlegacy.org
I hope everyone obtained what they wanted for the holidays. I wanted to wait until after the holidays to discuss what has been an extreme topic from numerous of individuals that know the work that is done by our company. In December, the 9th circuit panel of three judges voted unanimously to overturn the ruling of the NOTA of bone marrow donors not being compensated.
According to the 9th circuit panel, due to new medical techniques, now,there is an essentially risk-free technique — called apheresis — for obtaining the stem cells not from hip bones but from the arms — the bloodstreams — of donors as they rest for six or so hours in a recliner (retrieved from http://www.newsmax.com/GeorgeWill/Bone-Marrow-Donors-Compensated/2011/12/30/id/422579).
From our perspective and our relationship with Kumud Majumder, we, as an organization, believe that compensation, will definitely increase the level of survival for patients in need. However, many must understand the odds of being a match are still very slim due to the limited number of donors from various ethnic communities. Presently, five ethnic groups, Hispanic, African-Americans, Asians, Pacific Islanders, American Indians are comprised between 28-31% of the National Registry for bone marrow & Umbilical cord blood donation, while Caucasians are between 61 to over 70% of the registry for bone marrow and umbilical cord blood donors. These staggering percentages have been in the same variation for over 20 years (since 1991 joining all groups together for National Efforts). Those from various ethnic diverse groups have increased the least, this is why my husband and I started Preserve Our Legacy to try to make a difference and increasing awareness in such ethnic communities and establish Jaden's Law throughout America.
This new ruling would possibly encourage more individuals to sign up, in hopes of being compensated. Although it is not a direct cash payment, it can be in a form of scholarships, housing allowances, or contributions to charities chosen by donors. The program would initially target potential minority and mixed-race donors who are likely to have marrow cell types that are the most difficult to match(retrieved from http://www.newsmax.com/GeorgeWill/Bone-Marrow-Donors-Compensated/2011/12/30/id/422579). Some believe this would be a wrong motive, however, in the possibility to save anothers life, what other option can be applied. Many are familiar with Jaden's story. In 2006, there was only 4% available for African-Americans. Imagine if this ruling pertaining to NOTA was established, maybe Jaden would be here today, along with the thousands that have lost their lives.
We just want people to be aware that you still have to be a genetic match in order to be a donor. The more ethnic people that register the better the odds of someone finding a match.
Preserve Our Legacy, Inc. has a lot on the horizon for 2012! Branching the Preserve Our Legacy Umbilical Cord Blood program to different states, establishing Jaden's Law in other states, and MUCH MORE to come. For more information about us: www.preserveourlegacy.org
Subscribe to:
Posts (Atom)