The Project to Save Lives Leukemia, Sickle Cell anemia and other diseases can often be cured with a bone marrow transplant. However, African American patients with leukemia and Sickle Cell have only a 23% chance of finding a bone marrow match on the National Registry. For mixed race patients the chance of finding a match is even lower. Conversely, African American and mixed race patients with leukemia or Sickle Cell have a 77% or more chance of dying if the only treatment that will save their lives is a bone marrow match and transplant. Compare this to the 41% chance of finding a match for Asian or Pacific Islanders, 46% for Hispanics or Latinos, 57% for American Indian and Alaska Natives, and 77%f for whites. The only reason for these discrepancies is the lack of bone marrow donors from the African American and mixed race communities. The solution to this problem is simple. We can save lives by having more African American and mixed race bone marrow donors, and providing support
services to African American and mixed race children and adults in need of bone marrow transplants. This is the mission of “The Project to Save Lives”.
Doctors also use bone marrow transplants to treat aplastic anemia, autoimmune diseases (including scleroderma and multiple sclerosis), Hodgkin lymphoma, immune deficiency disorders, inborn errors of metabolism, non-hodkin lympohma, myelodysplastic syndrome, myeleproliferative neoplasms, multiple myeloma, myelofibrosis.
Thousands of patients with these diseases will need a bone marrow transplant to survive. Given the lack of African American and mixed race donors, the shortage of diverse donors costs lives. With ethnicity being the key to a perfect match between donor and recipient, we can change the odds only by increasing donors from the African American and mixed race communities. Increase the donors and the odds of finding matching donors will increase. You could save a life and become a hero by being a donor, and being a donor can be as simple as donating blood platelets.
ligible donors must be 18-44 years of age and in general good health. Donors must be willing and committed to donate to any patient they might match. Registration involves completing a consent form and a simple cheek swab test. Cheek swabbing is free. This can be done at an actual drive or by requesting a kit online to complete your swab. This places you on the Be The Match Registry for anyone you might match. While the current method of registration is digital The Project to Save Lives is working on a method of registration for those not equipped to register digitally.
If you match a patient in need, there are two ways to donate. The patient’s doctor chooses the method of donation that is best for the patient. 80% of the time Peripheral blood stem cell (PBSC) donation is used. This is the method of collecting blood-forming cells for transplants. The same blood forming cells that are found in marrow are also found in the circulating (peripheral) blood. PBSC is a non-surgical procedure, called apheresis. The donation takes place at an experienced facility that participates in PBSC collections. For 5 days leading up to donation you will be given injections of a drug called filgrastim to increase the number of cells in your bloodstream that are used for transplant. Some of your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm. The other 20% of marrow donations take place in a hospital under general anesthesia. Doctors use a needle to withdraw liquid marrow from the back of your pelvic bone. Donors feel no pain or discomfort during the donation. The procedure is out-patient. There is small discomfort to save a life. Further, donors never pay for donating and are never paid to donate. The amount of cells donated will not weaken your immune system. Most donors are back to their usual routine in a few days and your marrow naturally replaces itself within 4-6 weeks.
Some believe that donors are usually found in their family. This is not true. 70% of patients do not have a matching donor in the family. Adding more registry members increases the ethnic diversity of the registry which increases the variety of tissue types available, which helps more people of ethnicity and ethnic diversity find the match they need. Additionally, members of the LGBTQ+ community can join the registry and donate. The African American and mixed race communities need members who are committed to helping save a life. This means being willing to donate to anyone in need. If you are called as a potential match for a patient, your commitment means that you’re willing to take up to 20-30 hours spread over 4-6 weeks to: attend an information session, attend appointments, and donate. You are also committing to keeping your contact information up-to-date so that the registry can find you to quickly get a blood sample for further match testing.
There are many myths about bone marrow donation:
MYTH: Donating is very painful.
FACT: Donating is less painful than you think.
MYTH: Donating involves opening up or removing bones.
FACT: This is not true. Most blood stem cell donors (80%) give PBSC – a process similar to platelet donation. This is a non-surgical, out-patient procedure and no bone is removed. The donor
receives a drug for 5 days to increase the number of cells in the bloodstream. The cells are then collected during donation. The donor may experience head or muscle aches that disappear
shortly after the donation, and are typically back to their normal routine in 1 to 2 days.
The other procedure (20%) is a surgical, out-patient procedure that takes place in a hospital operating room. While the donor is under anesthesia, the doctors collect marrow from the back of
the donor’s pelvic bone. After donation, donors may feel soreness in the lower back. Donors are typically back to their normal routine in 2 to 7 days.
MYTH: Donating is dangerous.
FACT: There are few risks to donating.
MYTH: Donating takes a long time.
FACT: It doesn’t take long to save someone’s life.
MYTH: Donating is expensive and you need medical insurance.
FACT: Donating is absolutely free to the donor.
MYTH: Sharing your personal information and DNA is risky.
FACT: Be the Match and HIPPA will protect your privacy and
MYTH: Asking about a donor’s ethnic background is racist.
FACT: Ethnic background is an important factor for matching donors to patients. When it comes to matching human leukocyte antigen (HLA) types,a patient’s ethnic background is important in
predicting the likelihood or finding a match. This is because HLA markers used in matching are inherited.
MYTH: Gay men cannot join or donate.
FACT: Gay men and others in the LGBTQ+ community CAN join the registry and donate.
MYTH: Be the Match discriminates against people age 45+.
FACT: Age guidelines protect the safety of the donor and provide the best possible outcome for the patient. They are not meant to discriminate.
More Important Facts:
1. Every 3 minutes, someone is diagnosed with a blood cancer like Leukemia. For many of these and other patients with diseases like Sickle Cell anemia, a marrow transplant is the only lifesaving treatment-their only chance for a cure.
2. Every year, more than 14,000 patients are diagnosed with life-threatening blood cancers—like leukemia and lymphoma—or other diseases for which a marrow or cord blood transplant from an unrelated donor may be their best or only hope of a cure.
3. 70% of all patients who need a transplant do not have a matched donor in their family. They depend on Be The Match Registry® to find an unrelated donor or cord blood unit.
4. Approximately 70 % of transplants facilitated by the National Marrow Donor Program® are for patients diagnosed with leukemia or lymphoma.
5. Every 10 minutes, someone dies from a blood cancer. That’s more than six people each hour, or 148 people each day.
6. More than 70 diseases can be treated & cured by an unrelated donor transplant.
7. Leukemia causes more deaths than any other cancer among children and young adults under the age of 20.
8. Be The Match Registry works tirelessly on behalf of patients in need of a life-saving transplant. Through successful partnerships with organizations, more volunteer donors step forward, more funding becomes available to support critical outreach and more advances are made in the science of transplants. We all have the power to heal, the power to save a life. Take the first step.
9. African Americans and people of mixed race are particularly at risk of dying due to inability to find a match.
10. Due to significant medical achievements in recent decades, survival rates are higher than ever for bone marrow and PBSC transplants. There are Health Benefits of Diets That Increase Bone Marrow in Donors. There are health benefits to diets that will increase your Red Blood Count to make you a more valuable donor. The “Be the Match” registry can give you information on what to eat to increase your Red Blood Count which will, in turn, greatly improve you health.
Join the “Be The Match” Registry
“Be the Match” is the largest, most diverse registry of potential marrow donors and cord blood units in the world. “Be the Match” offers one-on-one support, education and guidance before, during and after transplants. But first a marrow match must be found. And there are many patients in need of a donor. The ICLA DA SILVA FOUNDATION, INC. is A Recruitment Center for the Be the Match Registry. The Icla da Silva Foundation is the largest recruitment center for the Be The Match Registry in the United States. It recruits over 38,000 new potential bone marrow donors every year, with a strong focus on minority communities. The Icla da Silva Foundation was established in 1992, in memory of the 13-year-old Brazilian girl named Icla da Silva. After two years of fighting leukemia, Icla passed away in New York City, where she came hoping to get her life saving treatment: a bone marrow transplant. The young girl never found a matching donor.
With offices across the United States and Puerto Rico, the Foundation is continuously expanding its efforts in providing assistance and hope to thousands of families in the United States and all over the world. The mission of the Icla da Silva Foundation is to save lives by recruiting bone marrow donors and providing support services to children and adults with leukemia and other diseases treatable by marrow transplants. The Icla da Silva Foundation is a nonprofit organization under section 501(c) 3 of the IRS Code. Eligible donors must be 18-44 years of age and in general good health. Be willing and committed to donate to any patient that you might match. Registration involves completing a consent form and a simple cheek swab test. This places you on the Be The Match Registry for anyone you might match. You can contact the ICLA/Be the Match organization through the following:
https://bethematch.org/support-thecause/donate-bone-marrow/donation-faqs/. You can also contact “The Project to
Save a Life” through its two community volunteers: John-Michael Lawrence at
firstname.lastname@example.org and Rhoda London at email@example.com.
What You Can Do Besides Being a Donor:
If you are not able to donate or are younger than 18 or older than 44, you can:
1. Host an actual cheek swabbing drive in you place of worship, school, business organization;
2. Publicize a digital drive in any of the above on Facebook or any other social media;
3. Share the information with other groups,family and friends;
4. Make a financial donation in honor of your own good health or in honor of your recovery from and illness. Since swabbing and medical expenses are free, financial donations go to support analyzing the swabs and medical expenses for the donor and recipient;
5. For a PHYSICAL Drive, register online at Join.Bethematch.org/JaxDonors for information and videos on how to hold a drive. Please join the effort, you can save a life.