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.

PRESERVE OUR LEGACY PARTNERS WITH LINK TO LIFE NETWORK TO EDUCATE AND INCREASE AWARENESS ABOUT BONE MARROW DONATION

Historical Partnership to increase awareness

New York, NY – Individuals with an ethnic background are at a disadvantage when it comes to finding a bone marrow match on the National Registry. According to the U.S. Census report, there are 311,899, 603 people in the United States and out of population, only 9 million people are registered on the National BE THE MATCH Registry as bone marrow donors. According to the C.W. Bill Young Transplantation website, in 2010, out of 9 million registered volunteers, only 28% (approximately 2.5 million volunteer donors) are represented by individuals from ethnic backgrounds. However, there is a new historical partnership that will embark on increasing the numbers of ethnic volunteer donors – that is Preserve Our Legacy and Link to Life Network, Inc.

Link to Life Network, Inc. (LTLN), is a 501(c)(3), not-for-profit organization, which was formed in 1992 to assist the NMDP in its efforts to register minority bone marrow donors. LTLN is the “only” African American official recruitment group of the National Marrow Donor Program/BE THE MATCH registry. Their mission is to increase the opportunity for minorities with life threatening diseases to obtain bone marrow transplants by increasing public awareness of the need for minority potential bone marrow registrants.

Preserve Our Legacy, Inc. (POL) is a 501 (c)(3), not-for-profit organization that was started after the devastating loss of a friend’s son named Jaden Hilton. The mission of the organization is to educate (edu-tain) individuals and create awareness about the benefits of stem cells and treatment options they provide, through peripheral blood stem cells (PBSC), bone marrow and umbilical cord blood donation. In efforts to increase awareness, POL founders fought and co-wrote A2168/S2038 in New Jersey. This historical legislation was established when NJ Governor Christie signed their legislation into law on August 25, 2010. The organization also received a resolution from New York Assemblyman Keith L.T. Wright naming May 3, “Bone Marrow and Umbilical Cord Blood Day” officially for New York State.

These organizations have joined forces to increase awareness within the ethnic community about the benefits of becoming a registered volunteer to help save a life. Both organizations have a calendar full of events that will be announced in the near future.

For more information about Preserve Our Legacy, Inc. log onto to or contact 877.778.3623: Shana Melius, ext 702 or shana.melius@preserveourlegacy.org, for more information about Link to Life Network, Inc. log onto or contact 917 593-4174 or michaelmarrowman@aol.com. For more information about C.W. Bill Young Transplantation Program Registry Data log on to: http://bloodcell.transplant.hrsa.gov/RESEARCH/Registry_Data/index.html
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