You Can Be a Superhero! Join the Marrow Registry!

Introduction  ·  Upcoming Marrow Drives  ·  Amy's Army  ·  Locate a Drive Near You
How to Join the Registry in Pittsburgh  ·  How to Join the Marrow Registry Outside of Pittsburgh
 How to Join the Marrow Registry Outside of the United States  ·  Private Testing Options
NMDP Recruitment Groups  ·  FAQs:  Eligibility Guidelines  ·  FAQs:  Donation Process
 Umbilical Cord Blood Donation  ·  Glossary of Terms
In Loving Memory of Rand E. Alansky  ·  Speaking Out for the NMDP!

Amazing Marrow Registry Videos!
Super cool YouTube Videos about the Marrow Registry!

Download & Read/Print Some Info
Marrow Registry Info Booklet-4 pages
Medical Eligibility Guidelines-3 pages
Description of Donation Process-1 page

Dear Friends of the Marrow Donor Registry,

I have created this web site as way to help educate people about
the importance of joining the National Marrow Donor Registry.

Through this web site, you can learn how to join the Registry,
what's involved in the actual donation process, and how to
locate a Bone Marrow Drive in the United States.

When you join the National Bone Marrow Registry, you become part of a world-wide database, with the potential to save someone's life anywhere in the world that you are found to be a match! Each day there are 6,000 people searching for a matching donor, and over 70 diseases that can be treated with bone marrow or adult blood stem cell transplants!

You might be someone's LIFE SAVING MATCH!
You can be a REAL SUPERHERO!

If you are unable to join the Registry due to age or health restrictions, you can still help support the National Marrow Donor Program simply by spreading the word! The more people who know about the program, the better! People can't join unless they know the program exists! Education is the key to increasing the number of people on the National Bone Marrow Registry. Together, we can help to educate our family and friends.

Together, we can help save lives! Thank you for visiting today!
Sincerely, Deena N. Alansky, Multimedia/Web Developer
deena@deenasportfolio.com  ~  www.deenasportfolio.com

Amy's Army is a dedicated group of volunteers, who are organizing Marrow Drives. Amy's Army has already added thousands of new names to the Marrow Registry, bringing new hope to the 6,000 people who are searching for a match each day! You can help 14 year-old Amy Katz, and so many others like her, by joining the National Marrow Donor Program!  www.amysarmy.org  ~  www.marrow.org

List of International NMDP Donor Centers:
www.marrow.org/HELP/Join_the_Donor_Registry/Join_in_Person/Intl_Donor_Centers/intl_dc_list.pl

Outside of the United States:  General Information:  612-627-5800

You're a busy person! Perhaps you are unable to attend a Marrow Drive or visit the Central Blood Bank. You can order a testing kit for yourself and get privately tested to join the Marrow Registry!

The Gift of Life Marrow Registry has received a grant to subsidize the cost of HLA Testing. You can visit their web site, and order a testing kit for only $36.00! The test is a simple cheek swab to collect cells, which can then be tested to determine your HLA typing. No blood is required. You can take this test in the privacy of your home, fill out the consent form, and mail it back to Gift of Life. www.giftoflife.org/donors/10.html

FAQs:  Frequently Asked Questions About Eligibility:

What Happens if I'm Ever Found to Be a Match?  ·  What's Involved in the Donation Process?
How Do They Get the Marrow?  ·  Will I Have to Travel if I'm Found to be a Match?
Is There Any Cost to Join the Registry?  ·  Is There Any Cost to Donate Stem Cells?
Visit These Sites to Learn More

If you are identified as a potential match for a patient, NMDP (National Marrow Donor Program) Donor Center representatives will further, more detailed testing to see whether you match well enough to be an actual donor for the patient. If you are indeed a match, you will receive further education about the donation process. You will be required to have a physical exam to determine your current health status, since the donor must be in good health to donate. See Donor Workup.

There are 2 donation methods commonly
used to donate Adult Blood Stem Cells:
Marrow Donation by Needle Aspiration &
Peripheral Blood Stem Cell Donation by Apheresis

Marrow Donation by Needle Aspiration
Marrow is found in the hollow cavities of the body's large bones. Donation involves withdrawing 2-3 percent of the donor's total marrow from the hip bone. There is no cutting, no stitching. The procedure involves a needle aspiration, performed using an anesthetic. Typically, the donor enters a medical center’s outpatient facility in the morning and goes home in the afternoon with the knowledge that he or she has helped to save a life! The marrow collection process usually takes approximately one to two hours, and your marrow naturally replenishes itself within four to six weeks.

Marrow donors can expect to feel fatigue, some soreness or pressure in their lower back and perhaps some discomfort walking for a period of a few days up to 3 weeks. Every person responds differently, so symptoms dissipate at different times for different people. Marrow donors can expect to be back to work, school and other activities within one to seven days.

My friend's sister was her marrow donor, and she described being sore for one week. She compared it to "working out hard at the gym when you haven't been to the gym in a year!" She also reported that she didn't need the pain medication that was prescribed, and only took Advil for mild symptoms for a few days. Of course, every individual will respond differently.

Peripheral Blood Stem Cell Donation by Apheresis
The majority of donations do not involve surgery. The patient's doctor most commonly requests a peripheral blood stem cell (PBSC) donation, which is non-surgical and outpatient. Using this method, adult blood stem cells are filtered from the circulating (peripheral) blood using an apheresis machine.

Peripheral blood stem cell (PBSC) donation is a newer procedure, but has now become more common than marrow donation. Data has shown greater survival rates among patients receiving PBSC transplants, so this method has gained acceptance and widespread popularity among doctors, patients, and donors alike. It's less invasive for the donor, yet still gives patients the critical chance for survival they so desperately need.

In order to collect a sufficient quantity of stem cells, injections of a medication called filgrastim must be administered. This mobilizes stem cells to travel from the bone marrow into the circulating peripheral blood. The stem cells are collected through a procedure called apheresis, which is similar to the process used in platelet donation. A cell separating machine filters out the stem cells, which can them be infused in the recipient.

Due to taking the drug filgrastim, PBSC donors may have symptoms such as headache, bone or muscle pain, nausea, insomnia or fatigue in the five days leading up to donation. These symptoms nearly always disappear one or two days after donating, and the donor is back to normal.

Both methods of donation result in a Stem Cell Transplant, where the healthy, donated adult blood stem cells are infused into the patient. They will then migrate into the patient's bone marrow, where they will (hopefully!) stimulate the production of new, healthy, disease-free blood cells! This procedure is often the very last chance of survival for patients with blood-related cancer.

6,000 people are in need of stem cell transplants each day. You might be someone's life-saving match!

You will NOT have to travel to the patient's location. You will only be required to go to the nearest hospital that offers the procedure. After he stem cells are collected, they are flown by courier to their destination anywhere in the world.

Is There Any Cost to Join the Registry?

Steps of Bone Marrow & PBSC Donation from www.Marrow.org

We are NOT referring to the issue of "embryonic"
stem cells that you hear about in the nightly news!

The cells used in blood stem cell transplants come from
three main sources:  bone marrow, peripheral (or circulating)
blood, and the umbilical cord of newborn babies.

Allogeneic transplantation    Autologous transplantation  ·  Apheresis  ·  Blast Cells
Blood Stem Cells  ·  Bone Marrow  ·  Chemotherapy  ·  Conditioning  ·  Cord Blood  ·  Cord Blood Bank
Cryopreservation  ·   Donor Workup  ·  DNA Based HLA Typing  ·  Engraftment  ·  Filgrastim
Graft Versus Host Disease  ·  Hematopoietic stem cells  ·  Human Leukocyte Antigens  ·   HLA Typing
Leukemia  ·  Marrow Donation  ·  Peripheral blood  ·  Peripheral Blood Stem Cell (PBSC) Donation
Peripheral Blood or Peripheral Blood Stem Cells (PBSC)  ·  Pre-transplant Conditioning
Radiation therapy  ·  National Marrow Registry  ·  Stem Cells  ·   Stem Cell Transplant
Transplantation  ·  Umbilical Cord Blood Stem Cell  ·  Volunteer Donor

Allogeneic Transplantation
In an allogeneic transplant, the patient gets blood stem cells from a donor. The donor's tissue type must closely match the patient's. The donor can be either related or unrelated. Related donors are usually a brother or sister, however, only 25% of all patients find a match in their own family. This means 75%, the overwhelming majority of patients, will need to find an unrelated donor! 6,000 people are looking for their life-saving match each day! That is why it's so important for every eligible adult to join the Marrow Registry!

Autologous transplantation
In an autologous transplant, the patient's own blood stem cells are collected from either the marrow or blood and frozen. The patient then receives high-doses of chemotherapy and/or radiation therapy to destroy the cancerous cells. The extracted stem cells are also treated to destroy the cancer cells, and then put back into the patient.

Apheresis
A procedure where blood is drawn from a patient's or donor's arm and circulated through a machine that removes certain cells such as stem cells, white blood cells or platelets. The rest of the blood is returned to the patient or donor. This is the procedure used for a Peripheral Blood Stem Cell Transplant.

Blast Cells
Blast cells are immature white blood cells. Healthy bone marrow makes stem cells that grow into the three types of blood cells: red blood cells, white blood cells, and platelets. A Leukemia patient's bone marrow makes too many blast cells (immature white blood cells). Normal blast cells turn into a type of white blood cell called granulocytes. Leukemic blasts are abnormal because they remain immature and do not function like mature white blood cells.

The main function of granulocytes is to destroy infection by bacteria and fungi. Immature blasts cannot carry out the functions of the mature granulocytes. This results is the patient becoming anemic and prone to infection. As the leukemic blast cells accumulate in the bone marrow, they begin to crowd out the normal blood cells that develop there. Eventually, they take up so much room that red blood cells, platelets, and normal white blood cells cannot be produced.

Blood Stem Cells
Stem cells are any of the cells in the body that can grow into other kinds of cells. Blood stem cells are one of several types of stem cell. Healthy blood stem cells are vital because they replace our supply of red blood cells, white blood cells, and platelets. Red blood cells carry oxygen throughout the body, white blood cells fight infection, and platelets clot blood (control bleeding) when the skin or other tissue is cut.

When a person's blood stem cells become diseased or cancerous, it is a life-threatening situation. Often, the only hope for a cure is a blood stem cell transplant, which replaces the patient's diseased cells with healthy new cells. For the transplant to be a success, however, these cells must match the patient's own cells as closely as possible.

Bone Marrow
A soft, spongy tissue that fills the cavities inside most bones in the human body. Bone marrow is a source of stem cells that manufacture red blood cells, white blood cells, and platelets. It is a conventional source for stem cell transplantation.

Chemotherapy
Treatment of cancer or other malignant diseases by the use of specific drugs that selectively destroy rapidly growing cells. Extremely high doses will also kill the body's stem cells in the bone marrow and peripheral blood stream. This is done in preparation for a bone marrow or stem cell transplant.

Conditioning
The chemotherapy and/or radiation that is given to patients before the marrow or blood stem cell transplant. The purpose is to kill diseased cells so the new cells can grow.

Cord Blood
Blood remaining in the umbilical cord immediately following the birth of the baby. It contains a rich concentration of stem cells and has other unique biological and therapeutic properties. Cord blood provides an alternative source of stem cells in many situations where bone marrow is used.

Cord Blood Bank
An organization that helps to collect and store umbilical cord blood for transplant. Cord blood banks recruit expectant mothers to donate their baby's umbilical cord blood for stem cell transplants. The blood in the umbilical cord and placenta is unique because it contains large numbers of blood stem cells. The cord blood banks collect, process, test and store the donated umbilical cord blood. Blood from each cord is frozen (cryopreserved) as an individual cord blood unit that is available to transplant.

Cryopreservation
Storage of biological materials in a constant steady state at extremely cold temperatures. The cells remain frozen at -196°C (-321°F) until needed.

Donor Workup
The process that a closely matched potential donor goes through to make sure he or she is healthy and ready to donate marrow or blood stem cells. Workup includes a detailed information session at the Donor Center, a complete physical examination and donation of blood samples for testing and research.

DNA based HLA Typing
Determining a person's HLA type by direct examination of the DNA. DNA-based typing is favored by the NMDP because it is very accurate and efficient.

Engraftment
The process by which newly transplanted stem cells migrate to and nest in the appropriate site of the recipient’s body and start producing normal quantities of normal mature cells.

Filgrastim
A protein that helps bone marrow make more white blood cells. Filgrastim is also known as GCSF (granulocyte-colony stimulating factor) or by the trade name Neupogen®. It is given to donors who have agreed to donate peripheral blood stem cells. This moves blood stem cells from the marrow into the blood stream so that they can be collected by apheresis. It is also given to patients to help increase their white blood cell count after the transplant.

Graft Versus Host Disease (GVHD)
A potential complication of transplants associated with the use of blood or tissue from a different person (allogeneic). In GVHD, the transplanted cells recognize the recipient’s tissue as foreign and attack the recipient. GVHD in stem cell transplants appears to be less severe with umbilical cord blood due to its immunologically immature cell content, that appears to be more tolerant of the new body’s environment.

Hematopoietic stem cells
The “Master” (blood forming) stem cells that are capable of recreating themselves and creating all of the other types of blood cells. They are a valuable but scarce resource, comprising only 1 in 10,000 cells in bone marrow, but 1 in 1,000 cells in umbilical cord blood.

Human Leukocyte Antigens (HLA)
Proteins on white blood cells that make each person's tissue unique. The HLA A, B, C and DR proteins are important in matching patients and donors for a marrow or blood stem cell transplant.

Human Leukocyte Antigens are specific cell surface molecules (antigens) that are found on almost all human tissues. These antigens are identified for both the potential recipient and donor candidates prior to any transplantation procedure. This identification process is known as “HLA typing”.

The more closely matched the recipient and donor’s HLAs are, the more likely the transplanted tissue will be compatible with and tolerated by the recipient. Registries, or databases, containing information on HLA-typed bone marrow and umbilical cord blood donors are maintained in many countries to help facilitate the location of an appropriately matched stem cell source for potential transplantation procedures.

The Wikipedia web site's entry on Human Leukocyte Antigens:
http://en.wikipedia.org/wiki/Human_leukocyte_antigen

HLA Typing
A person's own specific HLA A, B, C and DR proteins. Patients are matched with stem cell donors or cord blood units by comparing their HLA tissue types. HLA is the name given to the system used to identify the unique markers (antigens) that the immune system recognizes. These unique markers are found on virtually all cells in the body, including white blood cells. In a stem cell transplant, six HLA antigens are considered most important for matching: two A antigens, two B antigens and two DR antigens. HLA type is inherited through the genes passed down from parents. The genes are linked together in strands of three: three antigens from the mother and three from the father. This is why siblings are the first place to look for a match, since a brother or sister may have inherited the same HLA type. But even with siblings, there is only a 25% chance for a match, leaving 75% of all patients seeking a life-saving match from an unrelated donor.

Leukemia
A group of cancers of the white blood cells. Leukemias can be acute (fast forming) or chronic (slow growing). Leukemia causes excessive growth of immature white blood cells called "blasts." These blasts do not perform any of the beneficial functions of a healthy, mature white blood cell, such as fighting off disease and infection. Furthermore, they multiply in such enormous volume as to crowd out the healthy cells that remain. This often leads to anemia, impaired blood clotting, and bruising easily in the Leukemia patient.

Marrow Donation
A surgical procedure by which a person donates a portion of their bone marrow for a patient who has diseased marrow and needs a bone marrow transplant.

Peripheral blood
Blood derived from a patient’s blood stream, as opposed to blood in the bone marrow where it is made.

Peripheral Blood Stem Cell (PBSC) Donation
Hematopoietic stem cells are collected from a donor's circulating blood through an apheresis procedure following mobilization from the marrow with Filgrastim. The stem cells are then transplanted into a recipient.

Peripheral Blood or Peripheral Blood Stem Cells (PBSC)
Peripheral blood flows through the bloodstream in the body. Some blood stem cells are found in the peripheral blood.

Pre-transplant Conditioning
A regimen of chemotherapy with or without radiation therapy that destroys a patient's marrow. The marrow is then restored by transplanting stem cells.

Radiation therapy
Radiation is used to kill rapidly growing cancer cells or other malignancies. High doses of radiation, especially when used in combination with chemotherapy, also kills the body's stem cells in the bone marrow and peripheral blood stream. This is done in preparation for a bone marrow or stem cell transplant.

National Marrow Registry
A confidential national database of potential volunteer stem cell donors established and maintained by the National Marrow Donor Program.

Stem Cells
Certain cells in the body that can grow into other kinds of cells. Each tissue within the body contains a unique type of stem cell that can renew and replace that tissue (e.g. nerve, brain, cartilage, blood) when needed due to damage or wear. Stem cells of the blood (hematopoietic stem cells) generate all other blood cells in the human body, including red blood cells, platelets, and white blood cells. Sources of hematopoietic stem cells include umbilical cord blood, bone marrow, peripheral blood and embryos.

Stem Cell Transplant
The process of infusing healthy blood stem cells into persons who have undergone high-dose chemotherapy for one of many forms of leukemia, immunodeficiency, lymphoma, anemias, or metabolic disorders. There are three types of blood stem cell transplants: autologous, allogeneic and syngeneic. Healthy stem cells are collected from bone marrow, peripheral blood, and umbilical cord blood. Once the healthy stem cells are infused into the patient's blood stream, the cells move from the blood vessels to the center of the bones, where they begin making new blood cells.

Transplantation
The process of giving tissues or cells to treat a disease. The tissue or cells transplanted may come from the same patient (autologous) or from another person (allogeneic). A hematopoietic stem cell transplant procedure is used to replace dead or diseased stem cells with healthy stem cells capable of rebuilding the body’s blood supply and immune system.

Umbilical Cord Blood Stem Cell
A stem cell from the blood of the umbilical cord and placenta. These cells have the potential to produce all the components of blood in the same manner as stem cells derived from marrow.

Volunteer Donor
A person who has agreed to donate marrow or stem cells for transplant. Volunteer donors are listed in the National Marrow Donor Program (NMDP) Registry.

My Brother, My Inspiration

My brother was first diagnosed with Leukemia on April 2, 2003. A bone marrow transplant was his last hope for survival. My heart broke when my own test results came back, and I was not his match. Since I was the only sibling, we then had to search for an unrelated donor, but none could be found. My brother lost his battle with Leukemia on February 18, 2004.

There is only a 25% chance that siblings will be a genetic match for tissue typing, so that leaves 75% of patients in need of an unrelated donor! This is why the National Registry is so important! It gives hope to the 6,000 people who are searching for an unrelated donor each day!

Speaking Out for the National Marrow Donor Program!

In honor of my brother's memory, I have became an advocate for the National Marrow Donor Program. My goal is to raise awareness of the Registry, and encourage all eligible people to join. I myself did not know about the Registry prior to my brother's diagnosis of Leukemia. I believe that many more people would join, if they only knew about its existence, and the fact that you have the potential to save someone's life!

I believe that EDUCATION is the KEY to increasing the number of potential donors in the Registry. If your group or organization in the Pittsburgh area would like to learn about the National Marrow Donor Program, I am available for public speaking engagements. I can provide information about the Marrow Registry, the Donation Process, etc., and answer many commonly asked questions. I also have pamphlets provided by the Marrow Donor Program. Please contact me for further information. I can be reached at: deena@deenasportfolio.com.

Thank you for taking the time to visit this page!
Sincerely, Deena N. Alansky