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bone_marrow_manual

VIEWS: 9 PAGES: 24

									Minority Bone Marrow
 Registration Drive
       Manual
                             Table of Contents

   I.     Important Contact Information And Resources

   II.    Background Information

   III.   Brief Overview Of The Minority Bone Marrow Registration And
          Donation Process

   IV.    How To Run Your Own Minority Bone Marrow Registration Drive

   V.     Frequently Asked Questions

   VI.    Sample Publicity E-Mail

   VII.   Sample Flyers For Publicity Efforts

   VIII. Sample Handouts For Publicity Efforts




We would like to extend a special thank you to Michelle Khan, UMDNJ student and MSS
Minority Issues Committee member, as well as the student organizations at Robert Wood
Johnson Medical School in New Jersey that provided this packet. Your hard work and
dedication will make this venture possible for other medical students around the country.
Important Contact Information and Resources
National Marrow Donor Program
       http://www.marrow.org

NMDP Recruitment Groups
(Sorted alphabetically by name)

       Asian American Donor Program
       7700 Edgewater Drive, Suite 265
       Oakland, CA 94621
       800-593-6667
       http://www.AADP.org

       Located in Oakland, Calif. with a satellite office in New Hampshire, the Asian American
       Donor Program works with the Asian/Pacific Islander community to recruit new potential
       donors to the Registry. AADP began its NMDP affiliation in 1991. The group primarily
       recruits in the New Hampshire, Massachusetts, Rhode Island and Northern California
       areas.

       Asians for Miracle Marrow Matches
       231 East Third Street, #G107
       Los Angeles, CA 90013-1444
       888-A3M HOPE
       http://www.AsianMarrow.org

       Asians for Miracle Marrow Matches began its NMDP affiliation in 1991. Also known as
       A3M, this group is based in Los Angeles, Calif. They primarily work with the
       Asian/Pacific Islander community. The group recruits in the Southern California area.

       Because I Care
       P. O. Box 6525
       Longview, TX 75608
       903-753-7326

       Because I Care started recruiting donors to join the NMDP Registry in 1992 and
       currently focuses on the African American community. The group educates and recruits
       throughout the state of Texas and is based in Longview, Texas.

       Cammy Lee Leukemia Foundation, Inc.
       16 West 32nd Street, Suite 10D
       New York, NY 10001-3808
       800-77- CAMMY
       http://www.CLLF.org

       The Cammy Lee Leukemia Foundation works primarily with the Asian/Pacific Islander
       community and is based in New York City. The Foundation began its NMDP recruitment
       work in 1993. This group recruits in the New York, Massachusetts, New Jersey,
       Pennsylvania, Maryland and Virginia areas.
Icla da Silva Foundation, Inc.
Goldwater Memorial Hospital
1 Main Street, Room EC-9
Roosevelt Island, NY 10044
866-336-4252
http://www.icla.org

The Icla da Silva Foundation began working with the Hispanic/Latino community in 1995.
It is based in New York City and recruits in the New York, Pennsylvania, Massachusetts,
Connecticut, New Jersey, Maryland, Delaware and Florida areas.

Kids Beating Cancer, Inc.
4448 Edgewater Drive
Orlando, FL 32804
407-513-3138
http://www.kidsbeatingcancer.com

Based in Orlando, Fl Kids Beating Cancer works with the African American and Hispanic
communities. This recruitment group began its NMDP recruitment work in 1995 and
recruits throughout the state of Florida.

Link to Life Network, Inc.
107-36 135th Street
Suite LL1
Richmond Hill, NY 11419-3218
718-659-5883

The Link to Life Network began its NMDP recruitment work in 1994. The group works
with the African American community. The group is based in Richmond, New York and
recruits throughout the New York, New Jersey, Massachusetts, Connecticut,
Pennsylvania, Maryland and Delaware areas.

Maine Leukemia Foundation
P. O. Box 56
North Monmouth, ME 04259
207-933-2116

Located in North Monmouth, Maine, the Maine Leukemia Foundation works with the
American Indian/Alaska Native community. Approved as an NMDP recruiter in 1996, the
group recruits in the Maine and New Hampshire areas.

South Asian Marrow Association of Recruiters, Inc. (SAMAR)
55-13 96th Street
Flushing, NY 11368
866-592-5848
http://www.samarinfo.org

SAMAR works with Asian/Pacific Islanders and is based in Rego Park, N.Y. SAMAR
began recruiting for the NMDP in 1995, the group recruits in the New York,
Massachusetts, Vermont, Connecticut, New Jersey, Pennsylvania, Maryland and
Delaware areas.
                                    Background
       Blood stem-cell/bone marrow transplantation has been used to treat a wide
variety of diseases including acute and chronic leukemias, aplastic anemia,
myeloproliferative disorders, and other fatal blood diseases. With hopes of facilitating
potentially life-saving stem-cell transplants (i.e. bone marrow transplants) for patients in
need, the National Marrow Donor Program (NMDP) Registry was created in 1986. Since
its inception, the NMDP has facilitated approximately 13,000 transplants between
patients and compatible unrelated volunteer donors. The NMDP maintains an
internationally searchable database of over 4 million donors, which usually becomes the
primary lifeline for patients in need of marrow transplants. In fact, more than three
thousand patients are searching the Registry at any given time. Patients needing
transplants first search their families while seeking a matched donor, since the odds of
matching are highest within one’s group of relatives. Only about 30 percent of patients
find a related match, while 70 percent must turn their hopes towards the NMDP for
finding a compatible unrelated donor.

        The chances of identifying an unrelated matched donor are best within one's own
racial group. Currently, 69 percent of NMDP volunteer donors are Caucasian, leaving a
critical shortage of minorities (i.e. African-Americans, American Indian/Alaska Natives,
Asian/Pacific Islanders, and Hispanics) in the Registry. As a result, minority patients
have an extremely difficult time in finding compatible unrelated transplant donors. While
great progress has been made over the past decade, much needs to be done in
assuring that the NMDP Registry is a racially diverse resource.

        In order to understand the impact of the unequal access to transplants, one must
first describe the issue of bone marrow transplantation via unrelated (i.e. allogeneic)
donors. Patients requiring life-saving bone marrow transplants are fairly common. The
NMDP Registry estimates that each year, 30 thousand patients in the United States are
afflicted with diseases that can be cured by bone marrow transplantation. In a given
year, a major teaching facility such as the Robert Wood Johnson University Hospital
treats forty to fifty patients that require bone marrow transplants. Furthermore,
allogeneic transplantation may potentially cure a wide variety of diseases. However, the
decision to transplant is highly specific to factors such as patient age, disease status,
and quite importantly, the availability of a matching transplant. Certain diseases such as
Chronic Myelogenous Leukemia are cured only through transplants, while post-
transplantation results often demonstrate an excellent prognosis marked by disease-
free survival. Other diseases (e.g. multiple myeloma) are also only cured by
transplantation, but are characterized by a high risk of treatment-related mortality. It
should be noted that certain complications (e.g. graft rejection) are commonly
manifested in the recipients of mismatched transplants. Nevertheless, it is apparent that
bone marrow transplantation is the most effective treatment for a number of different
malignancies. With this in mind, it is important to recognize that the NMDP provides an
invaluable resource in facilitating potentially curative bone marrow transplants. Patients
unable to find matching unrelated donors through the NMDP are often forced to settle
on less than optimal alternate treatments.
       In order to increase the numbers of minorities in the NMDP Registry, national
recruitment groups are actively advocating on behalf of minority patients. For example,
organizations such as the South Asian Marrow Association of Recruiters (SAMAR), Icla
da Silva Foundation, and Cammy Lee Leukemia Foundation organize minority donor
recruitment campaigns. Such efforts have been quite effective since groups such as
SAMAR have registered over 35 thousand minority donors over the past decade.
Nevertheless, minority patients are still much less likely to find compatible transplants
than Caucasian patients. Our project goals are to:

    rally student and community leaders behind the cause of minority donor
     registration,
    assist organizations/individuals in coordinating drives while increasing public
     awareness regarding the need for minority donors,
    advocate on behalf of patients needing transplants, while directing them to
     medical professionals who can answer any questions,
    reduce the racial disparity in minority patients’ access to transplants,
    establish a cohesive Network through which numerous groups can unite.

As ever increasing numbers of minority individuals are registered through our efforts, we
hope that lives will be saved.
National Marrow Donor Program Registry
     Volunteer Donors Distribution




    Caucasian                                          African American
      68%                                                     10%




   Other/Multirace                                       Hispanic
         2%                                                10%

                                                    Asian Pacific
                        American                     Islanders
                                      South Asian
                     Indian/Alaskan                      7%
                                          1%
                           2%
     Brief Overview of the Minority Bone Marrow
         Registration and Donation Process

                        Registration (at a drive)

Donor Eligibility     Age: 18 to 60 years

                      Good general health

                      Individual need only register once


Factors to Consider   Those at-risk for HIV/Hepatitis - ineligible
                      Read information materials before registering

                      Make a moral commitment to the cause


Donor Consent Form    Demographic information

                      2 contact addresses of friends/relatives living in the U.S.

                      Brief health-history questionnaire

                      Signature


Blood Test            2-3 drops of blood collected by finger-prick method

                      Finger Prick & spots on filter paper
                        Blood Tests following Registration
   The registrant’s blood is typed for Human Leukocyte Antigen (HLA) and the results are
    entered into the National Marrow Donor Program Registry.

   The registrant can potentially make a difference for the 3 thousand patients searching
    the Registry every day.

   If the individual is a potential match, further confirmatory tests will be performed with
    new samples.


             Marrow Donation Process (if selected as a ―match‖)

If all tests confirm that an individual is the best possible donor, an information session is
scheduled to educate the potential donor on the two types of donation processes (described
below). A complete health check is done to ensure there is no danger to either the recipient
or the donor.

Marrow donation: The marrow collection process usually does not require an overnight stay
in the hospital. The procedure itself is painless, because it is performed under anesthesia. It
should be noted that adverse reactions to anesthesia are the most significant risk of marrow
donation. For an average of two weeks following the procedure, most donors experience
sore hips and some must restrict their activities. Most donors report that donating marrow is
a very positive experience, since they have been given the chance to save a life. Many
marrow donors are willing to donate again in the future.

Peripheral Blood Stem Cell (PBSC): A few days before the PBSC donation, the donor is
given an injection of a medication (Filgrastim) to increase the number of stem cells released
into the blood stream. After receiving the medication, peripheral blood stem cells are
collected by apheresis: The donor's blood is removed through a sterile needle placed in a
vein in one arm, and passed through an apheresis machine that separates out the stem
cells; the remaining blood (minus the stem cells) is returned to the donor through a sterile
needle in the other arm. Unlike marrow donation, PBSC donation does not require
anesthesia, which is the most significant risk of marrow donation. PBSC donors experience
symptoms such as bone pain and muscle pain prior to the collection while receiving
Filgrastim.
                 How to Run your Own
        Minority Bone Marrow Registration Drive
Please note that the following section has been adapted from communities where drive turnouts
have been successful. Since all organizations vary in structure, please feel free to modify the list
in any way, as these are simply suggestions for the drive-coordinating process. Please also let
us know if you have any questions!

1) Identify drive coordinator(s) within your community organization.

2) Inform Minority Recruitment Group that you are planning on coordinating a drive
   within your community.

      What is the role of the Minority Recruitment Group? The minority recruitment groups
       perform the actual services of providing registration paperwork, doing the blood testing,
       and sending information to the National Marrow Donor Program (NMDP) Registry.
      What is your role? Your organization's role is to organize the drive, provide a location
       to hold the drive, and publicize the drive within your community. The minority recruitment
       group will show up and do the rest!
      The Minority Recruitment Group can be ANY of the above-mentioned
       organizations (for example, Cammy Lee Leukemia Foundation, SAMAR, Icla da
       Silva), or any others you may find. Many of the organizations offer multi-lingual
       services, so you may want to choose a specific group based on your organization's
       needs. If you do not have a minority recruitment group in your area, please remember to
       utilize the services of donor centers scattered throughout the United States. You can
       locate a donor center by visiting the NMDP website. www.marrow.org

3) Decide upon Drive Date/Time/Location and make necessary reservations (ideally 1-2
   months in advance). After deciding upon the date, please confirm with the minority
   recruitment group to ensure that they will be available.

      please obtain the drive confirmation in writing
      if possible, coordinate the drive in conjunction with a multicultural fair/event or large
       community event (or annual convention)
      possible drive venues: health fairs, cultural events, religious programs, organization
       meetings.

4) Establish Drive Task Force (core coordinators) – 3-5 dedicated individuals. Try to
   gather the active support of an entire organization within the community (or co-
   sponsorship by multiple organizations would be helpful)

   Task-force/Organization duties:

      pre-drive publicity
      day-of-the-drive support
      good organizations to ask for support: health-related groups, cultural associations,
       community service organizations, religious groups, minority organizations, student
       groups
5) Recruit Volunteers (Minimum: 5-8. Maximum: as many as possible)

   Volunteer duties:

      Multiple organization announcements in the weeks leading up to the drive
      posting flyers before the event
      spreading word of the drive throughout the community (or organization)
      other pre-drive publicity
      day-of-the-drive support.

   How To Recruit Volunteers:

      Send out e-mails to all donors/volunteers that have participated in previous drives – build
       a volunteer base with time!
      Publicize the minority bone marrow registration cause amongst your organization’s
       members, and explain how a drive can potentially help save lives. Emphasize that the
       effort will only be possible if volunteers step forward and help out.
      Assign specific duties (e.g. distributing flyers during organization meetings, announcing
       the drive at organization meetings, posting flyers and publicizing around the community,
       day-of-the-drive help) to each volunteer. Try to have multiple volunteers per duty.
      friends, family-members, colleagues

6) Effective mass-publicity (posting flyers around the community, organization
   announcements/e-mails, community calendars, radio/television promotion, word-of-
   mouth publicity)

   Suggested flyer distribution locations:

      community centers, religious centers, health centers, neighborhood stores

7) Involving other community organizations

      contact officers of any other organizations that you think may want to help; ask for their
       support in recruiting registrants and volunteers
      ask if the drive can be announced at their organization meetings (Please let us know if
       we should send publicity materials for other participating organizations)
      ask if they can distribute drive flyers at their meetings
      ask if they can mass e-mail all the members of their organization to promote the drive

8) Other suggestions for publicizing the drive (recommended but only if you have ―extra
   resources‖)

      Include drive information (date/time/location/need for donors) in organization newsletters
      Publicize the drive on any relevant organization websites
      Take the message to local newspapers.

9) Day-of-the-Drive Volunteer Duties

   a) All volunteers - Explain the blood stem cell/marrow donation process to potential
      registrants and ensure that everyone who registers fully understands the cause. Our
      main goal is educated donors who will go beyond the blood test and actually donate to
      patients in need when called upon.
   b)   Distribute handouts to minority bystanders at the drive location.
   c)   Greet donors/volunteers at the drive location
   d)   Help donors fill out health history forms
   e)   Set-up/Clean-up

10) Drive Expenses (please discuss with the Minority Recruitment Group any projected
    expenses, they may reimburse you)

   a) photocopy flyers/handouts
   b) cut handouts (Kinko’s offers a good deal)
   c) try to get a drive story on the cause (i.e. need for minority donors) in organization
      newsletters or local newspapers
   d) day-of-the-drive sugar-rich food & drinks (suggested budget: 40 to 70 dollars)
   e) day-of-the-drive table posters/materials
   f) Please SAVE ALL RECEIPTS!!

11) Key Advice:

       It is always better to have more flyer/handout copies (for the day of the drive) than to fall
        short
       Try to recruit as many day-of-the-drive volunteers as possible, so that there will be
        several people publicizing the drive at the drive site.

12) Drive-Coordinating Time-Frame

   a. 2 months before drive

           inform the minority recruitment group that you would like to coordinate a drive
           reserve and confirm drive date/time/location
           if your organization requires insurance, please discuss with the Minority Recruitment
            Group
           begin publicity (steps 3 through 10)
           begin preparing flyers/handouts, and mass photocopying

   b. 1 month before drive

           distribute flyers/handouts around your community
           begin drive-related announcements at your organization’s meetings (please sign-up
            all interested volunteers and registrants)
           continue publicity (e-mails, word-of-mouth, etc.)
           continue to meet regularly with your fellow Marrow Coordinators

   c. 2 weeks before drive

           make table posters/banner for day-of-the-drive
           increase publicity within your organization (make sure all organization members are
            aware of the upcoming drive)
d. 1 to 1.5 weeks before drive

        estimate number (within 10 percent) of minority donors so Minority Recruitment
         Group knows how many supplies to bring
        continue increased publicity
        schedule day-of-the-drive volunteers, and inform them of the schedule
        remind pre-registered donors of the upcoming drive; ask if they will also volunteer.
        e-mail Minority Recruitment Group directions for the drive

e. 2 to 3 days before drive

        call (or e-mail) volunteers to confirm that each volunteer that signed up will be
         present at the drive
        remind the donors to show up
        continue posting flyers
        last-minute publicity
        buy sugar-rich food & drinks for drive (suggested budget: 40 to 70 dollars)

f.   After the drive

        Congratulate yourself and all volunteers/donors that made the drive possible; send
         out thank you e-mails/letters to everyone.
                      Frequently Asked Questions (FAQs)

Q: What is the National Marrow Donor Program (NMDP) Registry?

A: The National Marrow Donor Program (NMDP) maintains a database of registered potential donors,
which usually becomes the only lifeline for patients requiring marrow transplants. 3000 patients search
the Registry each day, with hopes of finding a compatible life-saving match. For more information on the
NMDP Registry, please visit www.marrow.org

Q: Who is being asked to register?

A: All minorities (African-Americans, Latinos, Asian/Pacific Islanders, South Asians, Native Americans,
and Multiple Races) between the ages of 18 and 60, who are in good general health.

Q: What is involved in registering at a drive?

A: Filling out a brief health history form, around 5 minutes of one’s time, and giving 2-3 drops of blood by
finger-prick. After registering, one’s blood is tested for the Human Leukocyte Antigen (HLA), and then
entered into the NMDP Registry. If one matches, he or she is contacted, counseled, and makes the final
choice on whether to give.

Q: Can you register more than once?

A: Once you are registered into the NMDP Registry, your results are in the national database until you are
61 years old and you don’t need to register again.

Q: How does someone know if they’ve been registered already?

A: They should have a donor card (sent to them in the mail about a month after registering) and/or
receive mailed newsletters from the National Marrow Donor Program Registry. To verify that you are
registered, you can also e-mail the NMDP (for their e-mail address, please check the website
www.nmdp.org). It is very important to notify the NMDP every time you change your address.

Q: Why are we especially asking minorities to register?

A: There is a critical shortage of minorities in the NMDP Registry; as a result, minority leukemia patients
have an extremely difficult time finding a life-saving transplant match. Check out the figures for yourself
(www.marrow.org)!

Q: Are there any limitations to physical activity after registering at a drive?

A: No, none at all.

Q: How is a marrow registration drive different from a blood drive?

A: At a marrow registration drive, a much smaller amount of blood—only a few drops—is taken. Also, the
same restrictions do not apply at a marrow registration drive, as when donating blood for a blood drive.
For example, it doesn’t matter if someone is underweight or if he/she has traveled outside the country.

Q: What if you match?

A: If a preliminary match is determined, additional blood tests are taken to determine if you are a precise
match for a patient. If the match is perfect, special counselors will give you detailed information and
answer your questions. A doctor will ensure you are in excellent health to donate. After being fully
informed, YOU MAKE THE DECISION to become a donor. Upon donation, 3-5% of marrow will be
collected from your hip by a needle and syringe. The procedure is done at a hospital under anesthesia
and is almost painless. All donated marrow will regenerate within a few weeks. After the procedure you
may experience soreness, like if you fell on your butt when rollerblading. Most donors can carry on a daily
routine almost immediately after the procedure. An alternate procedure to marrow donation is the PBSC
(peripheral blood stem cell) method in which no anesthesia is required The donor is required to take 4-5
injections of Filgrastim (a naturally occurring growth factor), and then stem cells are removed by
apheresis. The donated stem cells are immediately sent to the transplant center and infused into the
waiting patient, with hopes of saving the patient’s life.

Q: What can you do to help?

A: Please coordinate a Minority Bone Marrow Registration Drive within your community. The ―How to run
your own Minority Bone Marrow Registration Drive‖ section of this packet lists the steps involved in
coordinating a well-publicized drive. If you are unable to coordinate a drive, please tell other community
leaders about our organization.

Q: If you don’t have time to coordinate a drive, how else can you help?

A: Please join our efforts to network communities with significant minority populations. If you are a
member of a community, health-related, cultural, or religious organization, please consider contacting the
leadership, and asking them to think about coordinating (or encouraging others to coordinate) a drive at
their events. For more information, please refer to the ―How To Help‖ section at www.marrow.org.

Q: What is the first step in coordinating a drive?

A: First identify a community organization (or even better, multiple organizations) that would help sponsor
the minority bone marrow registration drive. Then, set up a task-force (4-5 chief coordinators should be
plenty) that will be in charge of the drive logistics, publicity, and heightening awareness surrounding the
cause. While setting up the task-force, please also contact one of the minority recruitment groups to let
them know that you’re planning on doing a drive.

Q: What are the next steps?

A: Please schedule a drive date/time/location AS EARLY AS POSSIBLE (ideally: 1.5-2 months in
advance). In the weeks leading up to the drive, it would be very effective to maximize drive publicity
(through meeting announcements, posting flyers, word-of-mouth, etc).

Q: What kind of room space is needed for the drive?

A: A room big enough to fit 3-4 tables (and the accompanying chairs) is needed. The room should also be
large enough to fit 20 individuals at any given time. As possible drive locations, please also consider
buildings where community-members normally go (e.g. health centers, community centers, etc).

Q: Is any paperwork/insurance-work required?

A: If your community organization requires that NMDP provide insurance for the drive, please contact a
Minority Recruitment Group to begin planning. They may have access to medical insurance, which can be
provided at no cost to your organization. After fulfilling the paperwork, the Minority Recruitment Group will
take care of phlebotomists (trained individuals that collect the small amount of blood) being present at the
drive. They will also arrange for the phlebotomists’ transportation to the drive location. Please fulfill the
paperwork requirement as early in the drive-coordinating process as possible.

Q: Which types of campus organizations have coordinated successful drives in the past?

A: Minority (African-American, Latino, South Asian, Asian, and Native-American) organizations,
premedical societies, community service organizations, and minority-oriented fraternities/sororities.
Medical student organizations have also coordinated successful drives.
Q: Is it a good idea to do drives at special events—cultural shows, health fairs, religious
gatherings, annual conferences, etc.?

A: At these venues, successful drives have been done in the past, especially if there’s a very large
turnout (400+) for the event. In this case, it is important to highlight the drive in the program guides, make
announcements at several points during the show/event, and heavily recruit donors before/after the show
and during intermission. At conferences and health fairs, we have often set up booths in order to publicize
the cause. At all large venues, it is effective to contact the organizers before the event, and ask if the
event’s Master of Ceremonies can announce the cause and how individuals can register.

Q: Does organizing a drive require funds?

A: If your organization requires funds in order to coordinate the drive, please let the minority recruitment
group know as early in the drive-coordinating process as possible. Some groups may reimburse for your
expenses. For example, the publicity process may require funds for photocopying flyers/handouts. Since
individuals will give a small blood sample at the drive, we recommend that sugar-rich foods (e.g. cookies,
candies, etc.) are provided for all registrants. Purchasing sugar-rich foods for the drive will require funds,
however minimal. Please save all receipts so your costs can be reimbursed on the day of the drive. In the
past, community organizations have used their budget’s advertising fund to help offset costs;
alternatively, mini-grants (from local health centers) are often available to fund a drive.

Q: What are the suggested ways to publicize?

A: Please check out the ―How to run your own Minority Bone Marrow Registration Drive‖ section within
this booklet. Please also try to gather as many volunteers for the drive as possible.

Q: What are the keys to an excellent drive turnout?

A: When considering the ―secret‖ of having a successful drive turnout, a few things are important: go all
out to publicize the cause, and the need for minority donors (when minority individuals realize what a
good cause it is, how registering will benefit them and all minorities in the long-run, and how little initial
effort there is on their part, they will most probably choose to donate); establish a ―reminder effect‖ so
individuals understand the cause, and hear about it over and over (and over) during the publicity efforts;
recruit as many volunteers as possible (there are never ―too many‖), since there’s always something to be
done; it’s also better to have extra flyer/handout copies than to fall short (on the day of the drive, these
materials will be extremely important, and you will need a lot); other than that, try to organize publicity
efforts around the ―How to run your own Minority Bone Marrow Registration Drive‖ section of this booklet,
try to take care of as many of the listed publicity suggestions as possible, and please feel free to contact
us if you have ANY questions.

Q: How many volunteers are needed for the drive-coordinating process?

A: As many as possible! Before the drive, volunteers (10+ dedicated volunteers would be great) are
needed for flyer-posting, announcing the drive at organization meetings, making posters, etc. On the day
of the drive, please try to get 5-10 volunteers for any given time slot throughout the day.

Q: What are good ways to recruit volunteers?

A: Announce at organization meetings, and sign up those interested. Ask organizations to mass e-mail
the standard drive message in this booklet to all members of their organization. Urge your friends, family,
and colleagues to help out. Local newspapers (especially a poignant pre-drive article) are also an
excellent way to reach out to potential volunteers/donors. Try to have multiple organizations co-sponsor
the drive, while urging the members of each organization to lead in the efforts and/or volunteer. Please
remember that we are attempting to register minorities, but strongly encourage both minorities and non-
minorities to volunteer. As you coordinate drives within your community, you will build a strong volunteer
base with time. Also see Step 5 within the ―How to run your own Minority Bone Marrow Registration Drive‖
section of this booklet.
Q: When is a good time to start rounding up volunteers?

A: As soon as the drive details (date/time/location) are confirmed! The earlier you finalize the details, the
more time you will have to plan/publicize the drive. It’s usually helpful to round up everyone initially
interested in helping out, and plan regular meetings (once a week or once every two weeks) to delegate
duties and update each other on the progress.

Q: What is the suggested time-frame for the entire 6-8 weeks of pre-drive publicity?

A: Please refer to the ―How to run your own Minority Bone Marrow Registration Drive‖ section of this
packet.

Q: While announcing the drive at organization meetings, what are the ―take home‖ points?

A: There is a critical shortage of minority donors in the National Marrow Donor Program Registry. Minority
leukemia patients have a very difficult time in finding life-saving transplants. The cause affects all
minorities—African-Americans, Latinos, Asian/Pacific Islanders, South Asians, Native Americans, Multiple
Races---and each minority individual should consider registering. Registration involves giving a very small
amount of blood, and only 5 minutes of one’s time. Those that register can possibly save a life, especially
that of a young child in need. Please note that every registrant counts, and that each individual who
registers at a drive should be fully aware of the reasons for registering (i.e. to increase the chances of
minority patients finding compatible life-saving transplant donors).

Q: What other materials can you bring to organization meetings to make the announcement
effective?

A: Pre-plan a brief announcement—based on the ―take home points‖---for the beginning of the
organization meeting. It’s also a good idea to bring flyers, which can be distributed to all members
present. Flyers are also a good visual aid for the announcement, since they display the pictures of
minority patients, while emotionally appealing to those present. It is also a good idea to bring a sign-up
sheet to collect the names of those interested in registering and/or volunteering. Please note that
minorities are encouraged to register, but non-minorities and minorities are encouraged to volunteer.
Also, template flyers are available in this packet.

Q: What are suggested formats for the posters/handouts/flyers? What is the purpose of each?

A: We have included a template flyer and handout in this booklet. They can be xeroxed and/or modified
through MS Word (please let us know if you have any questions), in order to make them specific for your
drive. Flyers are good for posting around community centers, health centers, and the drive site.

Q: How can you obtain National Marrow Donor Program pamphlets for advertising the cause?

A: Please contact the Minority Recruitment Group to obtain the pamphlets/brochures.

Q: What are the time-frames for organization announcements, campus flyering, stuffing
mailboxes, etc?

A: Please try to announce the drive as often as possible; this can be done way before the drive or even a
few days before. While announcing, please sign-up any individuals who may be interested in volunteering
or registering. It is a good idea to smother the community with flyers from 3 weeks to a few days before
the event. Anytime before 3 weeks may not be helpful, since flyers tend to get ripped down or forgotten.

Q: What are the steps to be taken care of in the week preceding the drive?

A: Please purchase sugar-rich foods (e.g. cookies, candies, soda) for day-of-the-drive donors. Also
remind the volunteers/donors that the drive is coming up. Please ask everyone to report to the drive site,
and include directions if necessary. Please also contact the minority recruitment group with a rough
estimate—within 10 to 20 percent---of the expected turnout, so they know how many supplies to bring. It
would also be helpful if you e-mail directions to the drive site.
Q: What are the day-of-the-drive volunteering duties?

A: Recruiting minority passerbys (through tabling and distributing handouts), welcoming
donors/volunteers to the drive, helping donors fill out health history forms, and collecting/labeling vials. It
is a good idea to ask all volunteers/donors to first report to the drive, and then check-in with a drive
coordinator, who will direct each volunteer to the specific duty. It’s also a good idea to ask all donors to
also volunteer. Please refer to the ―How to run your own Minority Bone Marrow Registration Drive‖ section
of this booklet for the complete list of drive volunteering duties.

Q: What are effective ways to publicize/recruit donors on the day of the drive?

A: Maximize the numbers of volunteers (there can never be too many!). Actively recruit minority
passerbys and urge them to register.

Q: While tabling, how can you ―actively‖ urge minority passerbys to register?

A: Place drive posters, handouts, and flyers at the table. Effective posters usually display photos of
minority patients, and brief information on the minority marrow registration cause. Volunteers should
actively get the attention of minority passerbys. Slogans to keep in mind are ―Only 5 minutes of your time
can save a life‖, ―Help save a life‖, ―Help these patients find a match‖, ―Show a little love, give some
blood‖, or anything else you can think of. While tabling, it will be effective to put 4-5 volunteers at a table,
so the message will be that much stronger (and better get the attention of the passerbys).

Q: What if a non-minority individual wants to donate?

A: Since there’s a critical shortage of minority donors in the NMDP Registry, federal funding is only
allocated for the registration of minorities. Non-minorities aren’t funded for, and for each individual that
registers there is a charge of 50-80 dollars. The only reason for this is that non-minorities are well
represented in the Registry, and the vast majority of non-minority leukemia patients often find a
compatible match. If a non-minority individual offers to register, thank them for their help, and please take
down their name/e-mail address. After the drive, send them an e-mail with the details regarding non-
minority registration (please see the ―Information for non-minority registrants‖ section of this booklet for
the non-minority letter). There is a national ―waiting list‖ for non-minority registration until private funds are
available; or if the individual chooses, he or she may register at a local NMDP center for a discounted
cost.

Q: What are the post-drive steps?

A: Thank the volunteers, donors, and community leaders that helped make the drive possible. Please
also decide upon coordinators for future drives. One of our main goals is to ensure long-term success by
coordinating at least one drive per year.

Q: Aside from coordinating a drive with your organization, what are other ways to spread word of
the cause?

A: Please help us in networking with other communities. By contacting organizations like yours, we are
attempting to reach out to the community at large. Please help us encourage drives at cultural association
gatherings, youth conventions, professional conventions, and any other programs that you can think of.

Q: Who can you contact for more information?

A: Please feel free to contact any of the minority recruitment groups listed on the contact sheet for more
information. The National Marrow Donor Program Registry site also has detailed FAQ sections, especially
on the medical aspects of the cause. For more information on medically-related issues, the registration
process, and bone marrow transplantation, please visit http://www.marrow.org/FAQS/faqs_idx.html
                    Sample E-mail for Publicity
Did you know:

* Minority leukemia patients are less likely than non-minority patients to find life-saving bone
marrow transplants.
* Minority leukemia patients have a 1 in 20,000 to 1 in 80,000 chance of finding a life-saving
bone marrow transplant.
* Leukemia is the most common malignancy in children younger than 10 years.
* Bone marrow transplants present an effective treatment for leukemia and over 60 other fatal
diseases.

              Please keep reading for ways in which you can help reduce this
                               disparity in only 5 minutes!!!

                          TEST TO BE A LIFE-SAVING MATCH!
                   MINORITY BONE MARROW REGISTRATION DRIVE AT
                             [YOUR COMMUNITY EVENT]!

Where:
When:
Who: All healthy minority individuals between the ages of 18 and 60

Minorities (African-Americans, Asians, Latinos, and Native Americans) are needed to
REGISTER as potential bone marrow donors at this drive. A critical shortage of minorities in the
National Marrow Donor Program Registry has made finding a compatible donor extremely
difficult for minority patients suffering from leukemia or other fatal blood diseases.

Registering as a potential donor at the drive involves giving a few drops of blood via finger-prick,
understanding the blood stem cell/marrow donation process, and filling out a short health history
form. The registration process will take no longer than 5 minutes. You DO NOT give marrow
during the drive and are not under the same restrictions as for a blood drive.

In the event that you match with a patient, you will be contacted to donate either peripheral stem
cells or marrow to a patient in need. You will also be counseled and given a final opportunity to
make an informed decision whether to donate or not.

For additional information and/or to indicate that you would like to register or volunteer at the
drive, please contact: ____________________. Please pass this message on to any other
interested organizations/groups.

                      YOUR EFFORTS COULD SAVE SOMEONE'S LIFE.

Thank you for your time and attention. We hope to hear from you soon.

Sincerely,
Your Name, Your E-mail Address
Drive Co-coordinator
                                                                     Daniel De-Gale, 12
                                                        Diagnosed with Acute Lymphoblastic Leukemia




                 Daniel Lu, 3                                                                                    Krupal Desai, 8
 Diagnosed with Acute Lymphoblastic Leukemia                                                                 Diagnosed with Leukemia



                                    2-3 drops of blood collected (by finger-prick) for tissue type testing
                                          Normal Blood Donation Restrictions do not apply
          Minorities include: Native Americans, African-Americans, Latinos, Asian/Pacific Islanders, and Multiple Races

   DATE/TIME:______________________________________________________________________
                                         ___
LOCATION___________________________________________________________________________

                                                               To pre-register or, for more information contact: _______________
     Sponsored by:                                             Email: ___________________________
                                                               Phone Number:____________________
                                                              Daniel De-Gale, 12
                                                 Diagnosticado con Leucemia Aguda Linfocítica
                  Daniel Lu, 3                                                                        Krupal Desai, 8
  Diagnosticado con Leucemia Aguda Linfocítica                                                  Diagnosticado con Leucemia




                     Solo se necesitan 2-3 gotas de sangre vía pinche dedo
                      Su sangre será analisada para sacar su tipo de tejido
                     La cantidad no sobre pasa una cucharada en volumen
       Las restricciones normales para la donación de la sangre no aplican en este caso
                Las minorías incluyen: Nativo Americanos, Africano-Americanos, Latinos, y Asiáticos Nativos

   FECHA/HORA:___________________________________________________________________
LUGAR:________________________________________________________________________
                                                 Para preregistrarse o para más información, llame: ______________
   Sponsored by:                                 Correo electrónico: ______________________
                                                 Número de teléfono:_____________________
       2-3 drops of blood drawn (by finger-prick) for tissue type testing

   !!! Normal Blood Donation Restrictions do not apply !!!
     Minorities include: Native Americans, African-Americans, Latinos,
                 Asian/Pacific Islanders, and Multiple Races

                         >>> SPREAD THE WORD <<<
Date/Time: __________________________________________________________________

Location:
____________________________________________________________________

Sponsored by: _________________________ and the National Marrow Donor Program

                                   To pre-register, or for more information contact: ______________________
                                   Email: _________________________ Phone: _______________________
       LIFE SAVING EFFORT!!!                                                    LIFE SAVING EFFORT!!!
  Minority Bone Marrow Registration Drive                                  Minority Bone Marrow Registration Drive
 Come and Get Registered with the National Marrow Donor Registry          Come and Get Registered with the National Marrow Donor Registry
     Only 2-3 drops of blood required for tissue type testing.                Only 2-3 drops of blood required for tissue type testing.

                         Minorities include:                                                      Minorities include:
Native Americans, African Americans, Latinos, Asian/Pacific Islanders,   Native Americans, African Americans, Latinos, Asian/Pacific Islanders,
                         and Multiple Races                                                       and Multiple Races




                                                                                    For more Information or to pre-register contact:
           For more Information or to pre-register contact:                               _______________________________
                 _______________________________
                                                                                    For more info on the donation process, check out:
           For more info on the donation process, check out:                         http://www.marrow.org/FAQS/donor_faqs.html
            http://www.marrow.org/FAQS/donor_faqs.html




       LIFE SAVING EFFORT!!!                                                    LIFE SAVING EFFORT!!!
  Minority Bone Marrow Registration Drive                                  Minority Bone Marrow Registration Drive
 Come and Get Registered with the National Marrow Donor Registry          Come and Get Registered with the National Marrow Donor Registry
     Only 2-3 drops of blood required for tissue type testing.                Only 2-3 drops of blood required for tissue type testing.

                         Minorities include:                                                      Minorities include:
Native Americans, African Americans, Latinos, Asian/Pacific Islanders,   Native Americans, African Americans, Latinos, Asian/Pacific Islanders,
                         and Multiple Races                                                       and Multiple Races




           For more Information or to pre-register contact:                         For more Information or to pre-register contact:
                 _______________________________                                          _______________________________

           For more info on the donation process, check out:                        For more info on the donation process, check out:
            http://www.marrow.org/FAQS/donor_faqs.html                               http://www.marrow.org/FAQS/donor_faqs.html
                                                     Krupal Desai, 8
                                               Diagnosticado con Leucemia


                Daniel Lu, 3                                                             Daniel De-Gale, 12
Diagnosticado con Leucemia Aguda Linfocítica                                Diagnosticado con Leucemia Aguda Linfocítica




         Solo se necesitan 2-3 gotas de sangre vía pinche dedo
         Su sangre será analisada para sacar su tipo de tejido
         La cantidad no sobre pasa una cucharada en volumen
         Las restricciones normales para la donación de la sangre no aplican en este
          caso
         Las minorías incluyen: Nativo Americanos, Africano-Americanos, Latinos, y
          Asiáticos Nativos

FECHA/HORA: _____________________________________________________
LUGAR: __________________________________________________________

                                 Para preregistrarse o para más información, llame: ___________
Sponsored by:                    Correo electrónico: ________________________
                                 Número de teléfono:________________________

Transplante de médula ósea
Los transplantes se realizan en pacientes selectos que sufren de las siguientes enfermedades: Leucemia
aguda linfocítica, leucemia aguda mielogénica, leukemia crónica mielogénica, linfoma de Hodgkin,
linfoma no Hodgkin, mieloma múltiple, anemia aplásica y cancer del seno.

Mitos y realidades

Mito: Es cierto que el transplante de médula ósea es una operación muy complicada?

Realidad: El transplante de médula ósea en la actualidad es procedimiento de alta tecnología biomédica
pero no es una operación. Se hace en forma ambulatoria y la médula ósea es obtenida por medio de
punción ósea o aféresis que es un procedimiento similar al de donar sangre. Posteriormente, el paciente
recibe el transplante como estar recibiendo una transfusión de sangre. Eso sí, se debe realizar estando el
paciente hospitalizado.

								
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