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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.