The Importance of College Students Joining the NMDP
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This is my work product from my internship course that I took over the summer last year. In this presentation, I discuss the importance of why college students should become bone marrow/stem cell donors and describe how a bone marrow drive works.
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The Importance of College Students Joining the NMDP
- 1. Meagan Rudy
- 2. What is the NMDP and Be the Match? How important are these drives in general? How important is it for college students to join the NMDP at these drives? Examples of drives Other ways that college students can help Outline of Presentation
- 3. National Marrow Donor Program ◦ Founded in 1987 ◦ 9 million donors on the registry Most ethnically and racial diverse registry in the world ◦ Have facilitated 43,000+ transplants ◦ 5,200+ transplants per year
- 4. Be the Match Registry ◦ New name for the NMDP Registry ◦ Created in 2009 ◦ Combined with other registries, more than 16.5 million donors (About Be the Match)
- 5. Kids Beating Cancer ◦ Founded in 1992 ◦ NMDP donor recruiter for Florida ◦ Has funded more than 2,000 drives ◦ Have helped 5,400 children and their families 31 marrow and blood stem cell donation requests in 2010 ◦ $8 million raised since its founding
- 6. “Fund the Match” ◦ Kids Beating Cancer’s source of funds ◦ Funds all out-of-pocket expenses that the family of the sick child and Medicaid cannot cover, including: Lab testing on family members Donor search and procurement Patient pre-workup costs Transplant procedure
- 7. Hats & Heroes Ball ◦ Annual gala held to raise funds for “Fund the Match” program Started in 2004 Seventh year ◦ Silent auction, live auction, and main raffle prize ◦ Expected revenue to be generated = $250,000 ◦ 400 guests expected to attend
- 8. Very important to get marrow/stem cell donors ◦ 70% of patients will not find a match in family (Who We Are) ◦ 75% of sick children will not find a match in family (Kids Beating Cancer – Step by Step Diagnosis to Transplant) Very important to get financial donors ◦ Total cost for one child depends on many factors, including: If he/she needs a bone marrow, a PBSC, or an umbilical cord blood transplant; If his/her insurance or Medicaid will cover any of the costs; and If the donor is related to him/her Very important to get the word out (and have the word spread around)
- 9. Education ◦ Reminding people that they could save a life ◦ Explaining that more minorities are needed on the registry ◦ Enlightening people that more than one procedure exists PBSC versus Bone Marrow donation ◦ Informing people about our organization Internship and volunteering opportunities
- 10. PBSC Donation ◦ More common than bone marrow donation ◦ Non-surgical ◦ Steps: 1. Injected with fligrastim 5 days prior to donation 2. Blood will be removed through one IV on one arm with a machine similar to one used for dialysis 3. Stem cells will be filtered out while blood is given back to donor through the other IV in the other arm ◦ (Possible) side effects: Headache Bone aches Muscle aches
- 11. Bone Marrow Donation ◦ Less common than PBSC donation “Last resort” transplant for recipient ◦ Outpatient surgery ◦ Needle will be used to extract bone marrow from pelvic bone ◦ Side effects: Minor soreness in lower back
- 12. 21,287 42,443 4% 8% 18-24 181,861 74,548 25-34 36% 15% 35-44 45-54 55-60 187,267 37% Number of Deaths in 2009, both genders and all races (Kochanek, Xu, Murphy, Miniño, & Kung, 2010, p. 33)
- 13. 18-24 25-44 45-60 Number 1 cause of death Accidents (Motor Accidents (Motor Any cancer vehicle + all other) vehicle + all Death rate per 100,000 other) 126,035 8,646 28,844 Number 2 cause of death Assault (Homicide) Any cancer Any heart disease Death rate per 100,000 3,374 16,236 82,963 Number 3 cause of death Intentional self- Any heart All other causes harm (Suicide) disease Death rate per 100,000 3,039 3,039 14,053 Top 3 Causes of Death by Age Group (Kochanek, Xu, Murphy, Miniño, & Kung, 2010, pp. 53-54)
- 14. 35.00% 29.52% 30.00% 25.00% 24.16% 20.00% 15.00% 12.44% 10.16% 10.00% 7.76% 6.00% 4.36% 5.00% 3.56% 2.22% 1.60% 1.84% 2.10% 0.78% 1.24% 0.26% 0.74% 0.21% 0.59% 0.00% Diabetes Ulcers Kidney disease Liver disease Arthritis Chronic joint symptoms 18-24 25-44 45-60 Percentage of individuals 18 and older with certain chronic conditions (Pleis, Ward, & Lucas, 2010, p. 157)
- 15. 69.33% 70.00% 65.92% 60.00% 50.00% 40.00% 30.00% 24.27% 20.00% 14.08% 13.68% 10.00% 4.74% 4.52% 1.66% 1.58% 0.00% 18-24 25-44 45-60 Not limited Limited Limited due to 1+ chronic conditions Percentage of individuals 18 and older who are limited in doing daily activities due to at least one chronic condition (Adams, Martinez, & Vickerie, 2010, p. 84)
- 16. 14.00% 12.00% 10.00% 8.00% 6.00% 4.00% 2.00% 0.00% Any physicial difficulty 1/4 of a mile 10 steps without rest2 hours kneel & reach over head (combined)or carry 10 Push or pull large objec Walk Climb up Stand and sit for Stoop, bend, or (combined)Grasp or handle small objects Lift pounds 18-24 1.56% 0.52% 0.34% 1.27% 0.98% 0.16% 0.34% 0.57% 25-44 4.44% 1.48% 0.96% 3.63% 2.82% 0.24% 0.96% 1.63% 45-60 15.04% 6.24% 4.56% 13.20% 11.60% 1.68% 3.92% 6.08% Percentage of individuals 18 and older who have difficulty doing certain physical tasks (Pleis, Ward, & Lucas, 2010, p. 172)
- 17. 26.08% 25.00% 20.00% 15.00% 10.48% 10.00% 6.44% 5.76% 5.00% 3.26% 2.26% 2.00% 1.14% 0.82% 0.28% 0.16% 0.44% 0.00% All Types Coronary Disease Hypertension Stroke 18-24 25-44 45-60 Percentage of individuals 18 and older with certain heart diseases (Pleis, Ward, & Lucas, 2010, p. 148)
- 18. 12.00% 10.59% 9.84% 10.00% 8.00% 8.00% 6.24% 6.00% 5.63% 4.74% 4.48% 4.00% 3.71% 2.08% 1.97% 1.88% 2.00% 1.66% 0.72% 0.08% 0.22% 0.00% Emphysema Had asthma Still has asthma Hay fever Chronic bronchitis 18-24 25-44 45-60 Percentage of individuals 18 and older with certain respiratory diseases (Pleis, Ward, & Lucas, 2010, p. 151)
- 19. 8.00% 7.52% 7.00% 6.00% 5.00% 4.00% 3.00% 2.00% 1.44% 1.26% 1.20% 1.12% 1.00% 0.59% 0.44% 0.15% 0.21% 0.05% 0.00% 0.00% 0.00% Any cancer Breast cancer Cervical cancer Prostate cancer 18-24 25-44 45-60 Percentage of individuals 18 and older with cancer (Pleis, Ward, & Lucas, 2010, p. 154)
- 20. Valencia College ◦ Occurred on 7/5 and 7/6 ◦ Obtained 50 donors (38 at Valencia East & 12 at Valencia West)
- 25. Donate money Volunteer Host a bone marrow/stem cell donor drive Help spread the word through Facebook and Twitter
- 26. About Be the Match. (n.d.). Retrieved July Kids Beating Cancer – Step by Step Diagnosis to 8, 2011, from Transplant. (n.d.). Retrieved July 20, 2011, from http://www.marrow.org/ABOUT/About_Be_The_M http://www.kidsbeatingcancer.com/medicalresour atch/index.html ces/step-by-step-diagnosis-to-transplant.html Advances in Transplant. (n.d.). Retrieved July Kochanek, K., Xu, J., Murphy, S., Miniño, A., & 13, 2011, from Kung, H. (2010). Death: Preliminary Data for http://www.marrow.org/PATIENT/Undrstnd_Dise 2009 [Electronic version]. National Vital Statistic ase_Treat/Undrstnd_Treat_Opt/Lrn_BMT_Cord/Ad Reports, 59(4), 33, 53-54. Retrieved June vances_in_Tx/ 30, 2011, from Adams, P., Martinez, M., & Vickerie, J. (2010). http://www.cdc.gov/nchs/data/nvsr/nvsr59/nvsr5 Summary health statistics for the U.S. population: 9_04.pdf National Health Interview Survey, 2009 [Electronic Pleis, J., Ward, B., & Lucas, J. (2010). Summary version]. National Center for Health Statistics: health statistics for U.S. adults: National Health Vital and Health Statistics, 10(248), 84. Retrieved Interview Survey, 2009 [Electronic version]. June 27, 2011, from National Center for Health Statistics: Vital and http://www.cdc.gov/nchs/data/series/sr_10/sr10 Health Statistics, 10(249), 148-157, 172. _248.pdf Retrieved June 27, 2011, from Grow the Registry. (n.d.). Retrieved June http://www.cdc.gov/nchs/data/series/sr_10/sr10_ 30, 2011, from 249.pdf http://www.marrow.org/HELP/Recruit_Donors/in Steps of Bone Marrow & PBSC Donation. (n.d.). dex.html Retrieved July 27, 2011, from Kids Beating Cancer – About Us. (n.d.). Retrieved http://www.marrow.org/DONOR/When_You_re_As July 18, 2011, from ked_to_Donate_fo/Steps_of_Donation/index.html http://www.kidsbeatingcancer.com/aboutus.html The Need for Donors. (n.d.). Retrieved July Kids Beating Cancer – Message from our Founder. 9, 2011, from (n.d.). Retrieved July 19, 2011, from http://www.marrow.org/HELP/Recruit_Donors/Nee http://www.kidsbeatingcancer.com/aboutus/foun d_for_Donors/index.html dermessage.html Who We Are. (n.d.). Retrieved July 3, 2011, from http://www.marrow.org/ABOUT/Who_We_Are/inde x.html
Editor's Notes
- Point #1 of the presentation: the NMDP, which stands for the National Marrow Donor Program, and the Be the Match Registry. There will also be details on Kids Beating Cancer, one of four of Florida’s main bone marrow and stem cell donor recruiters.Point #2 of the presentation: the importance of these drives. There are thousands of patients, both children and adults, who have conditions that can be treated and cured with a stem cell or bone marrow transplant. Out of all the patients who needs transplants, 70% of them will not find a match within their own families (Who We Are). Therefore, they must find an unrelated donor who is in good health and is between 18 and 60 years old. This section will go into much more detail, including details about both procedures.Point #3: how important it is for college students to join the NMDP. Out of any age group, 18-24 year olds are the healthiest age group to procure stem cell and bone marrow from. This section will present reasons why it is important for them to donate.Point #4: two examples of drives at local colleges. These two were conducted at both the East and West campuses of Valencia Community College after the Fourth of July weekend. This section will explain how these drives work.Point #5: other ways students can help out, if—for a specific reason (or reasons)—they cannot donate
- The National Marrow Donor Program was started by Dr. Robert Graves and Mrs. Sherry Graves after their 10-year-old daughter Laura, who was diagnosed with leukemia, was able to live for 1.5 years after being given a bone marrow transplant (Who We Are). In 1979, this kind of treatment for leukemia patients was unheard of until Laura received one at Fred Hutchinson Cancer Research Center in Seattle (Who We Are). Since being founded in 1987, the registry has grown to 9 million members and has helped provide more than 43,000 patients—both adults and children—with life-saving bone marrow and stem cell transplants (Who We Are). More than 5,200 transplants are facilitated every year by the program (Who We Are). Despite these amazing figures, the registry needs to be more culturally diversified with minorities such as Africans, African Americans, Hispanics, and Asians. Why? For one, many patients who are in need of a transplants are from “racially and ethnically diverse communities” (The Need for Donors). So, they need donors who are from the same racial and ethnic backgrounds as them. This leads to the second point. Second, a patient’s body is less likely to reject a transplant from a donor who is of the same race(s) and/or ethnicity(ies). Each individual carries within their DNA genetic markers that are unique to specific races and ethnicities (The Need for Donors). No two are the same; for instance, a black individual will not have the same genetic markers as a white individual.
- In the last 24 years, there have been many medical advances, such as new vaccines (swine flu, lyme disease, Hepatitis A, and HPV) and laser eye surgery. During this time span, clinical trials and medical studies have helped doctors understand the transplanting process better, including how to take better care of patients who receive transplants and which patients will do well after a transplant (Advances in Transplant). Another new discovery was also made: stem cells taken from the blood can cure the same amount of diseases as marrow and can be taken in a non-surgical manner. This procedure—called peripheral blood stem cell (PBSC) donation—is more common in practice now than bone marrow donation. In fact, approximately 76% of donations by registered donors are PBSC donations while only about 24% are bone marrow donations (Advances in Transplant). With these medical advances came high demand for more donors to help a growing number of patients with diseases such as leukemia and sickle cell anemia. In 2009, the NMDP re-designed its registry and program to meet this demand; with the re-design in 2009 came a new name: Be the Match (About Be the Match). This new registry allows doctors to access any donor’s provided information—specifically, their race and ethnicity—to determine if they are a match for their patient or not (About Be the Match). 16.5 million donors is an impressive number; however, it does not include the huge number of volunteers who help run marrow drives and the huge number of people who have financially contributed to the NMDP. Financial donation and volunteering will be covered later on in this presentation.
- In 1992, Dr. Benjamin Guedes and his wife, Margaret Voight Guedes, lost their son, John. He was only nine when he lost his battle with leukemia. Shortly after his death, Mrs. Guedes founded Kids Beating Cancer and has been helping children like John fight life-threatening diseases with life-saving marrow & stem cell transplants (Kids Beating Cancer – Message from our Founder). Since its inception, it has helped many children and their families down the road towards recovery by testing donors and raising funds. More than 2,000 drives have been held, and more than 34,000 individuals have been tested (Kids Beating Cancer – About Us). Thanks to charitable donors over the years, the organization has raised $8 million that goes towards the “Fund the Match” program, which will be discussed in the next slide.Photo credit: Kids Beating Cancer – Facebook page, profile picture
- After a child is diagnosed with a life threatening disease, the parents will learn that the only way their child can be cured is with a bone marrow or stem cell transplant. Then, they will learn that even with insurance or Medicaid coverage, the multiple costs involved with transplants—including testing potential donors, harvesting donor marrow or stem cells, transplant procedures, hospital stays, and prescriptions—could place the family into financial turmoil. The costs can mount up quickly; in fact, the transplant procedure alone can cost an average $450,000 when not covered by insurance or Medicaid (Kids Beating Cancer – Step by Step Diagnosis to Transplant). This is where Kids Beating Cancer steps in. Through the use of its “Fund the Match” program, the organization will help pay for what is not covered by either Medicaid or another form of insurance. Thanks to this program, 5,400 children have been able to get the treatment they need (Kids Beating Cancer – About Us).
- There are three ways the organization gets funds for the “Fund the Match” program. The first way is through marrow drives. Hundreds of drives are held every year to not only recruit donors but to also gather donations from individuals who pass by a Kids Beating Cancer booth. The second way is having people donate through both KBC’s official website and Facebook page. The third and final way is rather unique to the organization: through a themed charity ball. Since 2004, Kids Beating Cancer invites donors & their guests, vendors & their guests, and other important guests—such as physicians from nearby hospitals—to a gala that revolves around a theme. This year, the theme is Hats & Heroes. The heroes honored on this night are:the children who fight and beat life-threatening diseases every day,the donors who give such an amazing gift to these children, andthe financial donors who help make transplants possible. The gala consists of a silent auction, of a live auction, and of a raffle. The raffle prize is a designer item (i.e.: a handbag, a pair of shoes). All of the funds from the event, which are expected to total $250,000 this year, will go to the “Fund the Match” program. The gala is held at a different location every year; this year, it will be held at the Reunion Resort (pictured on the right) in Orlando.Photo credit: flickr.com
- Generally, it is very important to recruit healthy individuals between the ages of 18 and 60. It is very rare for a patient, young or old, to find a match within their families. In fact, only 30% of patients overall and 25% of patients who are children will find a match within their families. For the other 70% and 75% respectively, they must turn to the NMDP to find an unrelated donor for a match. Even with 9 million donors on it, the Be the Match Registry needs more racially and ethnically diverse donors to join. Why? As stated in an earlier slide, many of the patients come from more than one racial and ethnic background, so it is harder to find a compatible donor match for them. It generally is also important to find financial donors because of the cost for each children to get treatment. The total cost to each child varies based on what type of transplant he/she need, what type of insurance he/she has, and whether the donor is related to him/her (Kids Beating Cancer – Step by Step Diagnosis to Transplant). In the end, it could add up to close to or could go over $1 million. Not all of those costs will be covered by insurance or Medicaid. The “Fund the Match” program will help the child’s family pay for unpaid & uncovered costs. However, those funds can only be stretched so far. That is why it is so important for people to donate money: so that these children can get the treatment they need. It is also important to get the word out about Kids Beating Cancer, Be the Match, and the NMDP. Many people do not know about any of these, so it is important to inform them at drives and online about each of these things—along with marrow and stem cell donation—and encourage them to spread the word.
- It is very important for us at Kids Beating Cancer, both at the drives and online, to educate people about donation. Not many people know that there is more than one way to donate—PBSC donation (pictured bottom right)—and that bone marrow donation (pictured top right) is far less common than it previously was. We have to explain the similarities of the procedures:Both are done in a medical setting,One’s body can replenish what is “lost” within 4-6 weeks,A donor may have side effects from either procedure,Both can cure 72 blood-borne diseases, andBoth could save lives.We also need to explain the differences between the procedures, which will be done in the following two slides. We also have to remind people that they could save a life, most likely a child’s, and that all of the patients that need the NMDP’s help cannot find a match within their own families. Not many people know that many of the patients have at least one minority background, so we have to explain that the more donors with ethnically and racially diverse backgrounds on Be the Match, the better. It is also very important that we, during these drives and online, inform people of our organization. It is also important that we inform them of internship and volunteering opportunities that the organization has throughout the year. We need to let them know that they can hold their own marrow/stem cell donor drives with their church, organization, or club. Some of the hundreds of drives held every year are not held by us; in fact, employees from organizations, college students, and others hold drives on behalf of KBC. These individuals will obtain the kits, forms, and literature (i.e.: handouts, pamphlets) from the organization, hold a drive, and send the kits & forms back to us to be processed after the drive is complete.Photo credits: drugs.com (Marrow); centerspan.org (PBSC)
- As stated in the previous slide, we have to educate people who either find the KBC page online or pass by our booth during a marrow drive that there is more than one type of donation beyond bone marrow. This type of donation, known as Peripheral Blood Stem Cell donation, is more common now (about 76% of donations are PBSC donations) than bone marrow donation and cures the same amount of diseases that marrow does (Advances in Transplant).This is the non-surgical route to donation. If it found that you are match to a patient and the patient needs a PBSC transplant, you will be contacted by a local blood center. At the center, they will inject you with a drug called fligrastim, which is used for the sole purpose of increasing an individual’s stem cell count in the blood, for five days (Steps of Bone Marrow & PBSC Donation). On the fifth day, the donor’s blood will be taken out of one arm, and the stem cells will be filtered out by way of a machine similar to a dialysis machine (pictured on the right) (Steps of Bone Marrow & PBSC Donation). The donor will not lose any blood; it will be returned through a second IV in the opposite arm. Donors can get back to their normal routines one to two days after the stem cells have been procured. There are some side effects from the fligrastim that donors may experience, including headache, bone aches, and muscle aches. These usually subside a few days before the donation.Photo credit: centerspan.org
- Bone marrow donation, unlike PBSC donation, is a less common form of donation. Only 24% of donations from individuals on the Be the Match Registry are bone marrow donations (Advances in Transplant). Usually, this is a last resort for a patient due to their body rejecting at least one transplant. Unlike PBSC donation, bone marrow donation is an outpatient surgery where the donor is placed under anesthesia and placed onto their stomach (Steps of Bone Marrow & PBSC Donation). The surgeon will then place a needle into the pelvic region, as pictured on the right, and withdraw some liquid marrow. After the procedure is done and the anesthesia has worn off, the donor can go home. He/she can get back to his/her normal routine within two to seven days. There is one side effect that the donor will feel: soreness in his/her lower back that can last anywhere from a few days to a few weeks.Photo credit: drugs.com
- As was stated in the notes from the presentation outline, 18-24 year olds—which are mostly college students—are the healthiest age group. The healthier the donor, the more likely they are able to heal from either donation procedure. Also, they are less likely they are to have complications. This section will show statistics to explain why. This first slide shows the number of deaths there were in 2009 for both genders and all races. As it can be clearly seen, an individual who is between the ages of 18 and 24 & is less likely to die than an individual that is between the ages of 45 and 54. An individual between 18 and 24 is also less likely to die than someone between the ages of 55 and 60. Using an example of two individuals who have signed up for the Be the Match Registry, what this statistic shows is:Individual A (between 18 and 24) will be more likely to be alive to donate either blood stem cells or bone marrow. Individual B (between 55 and 60) will be less likely to be alive to donate either blood stem cells of bone marrow.
- In this slide are the top three causes of death for three age groups with their death rate per 100,000. Like the previous slide, it shows that 18-24 year olds are less likely to die from natural causes than 25-44 year olds or 45-60 year olds. Certain diseases prevent one from signing up for Be the Match; those include HIV, hepatitis, heart disease, and cancer. As shown in red bold font, heart disease & cancer were found to be two of three leading causes of death in 25-44 year olds and 45-60 year olds. An individual from either age group with one or both diseases would be excluded. Do not think that the 18-24 age group is not being left out of this. All three causes for this group are all of unnatural origin; these can happen to anyone at any time. So, it is imperative that any individual from this age group join Be the Match.
- Certain chronic conditions, such as diabetes, chronic back problems, and rheumatoid arthritis, can also prevent an individual from joining. Any of these conditions can slow down the healing process from any type of medical procedure. In this slide, six chronic conditions are shown. In all six categories, the chance of an individual having the condition greatly increases with age. 18-24 year olds (college students) are the least likely to have any of these chronic conditions, so they are more likely to be able to join the registry. They will also be more able to heal from either the PBSC or bone marrow procurement procedure.
- As was stated in the last slide, certain chronic conditions can prevent an individual from becoming a donor. If the condition limits his/her daily routine, the individual will be prevented more so from joining the NMDP and Be the Match. This slide shows the percentages of individuals who are physically limited by at least one chronic condition within three age groups. Pay particular attention to the black arrows and the percentages (in bold and underlined font) underneath them. What can be seen? Like certain chronic conditions, physical limitation increases with age; in fact, it almost triples when one moves out of the 18-24 age group to the 25-44 age group. It almost triples again when one ages out of the 25-44 category and ages into the 45-60 category. Out of all three groups, college students are the least likely to be physically limited by a chronic condition and more likely to be fit enough to give a marrow or stem cell donation.
- As the previous slide stated, if an individual is limited in daily activities by at least one chronic condition, then he/she cannot join the registry. This slide further explains how chronic conditions can limit an individual from doing physical tasks. If an individual has any type of physical limitation (even if it is minor) when they sign up on the registry and then match a patient, his/her recovery time will be much longer than normal. It is also possible that side effects from either procedure will be worse for them than for a donor who had no physical limitations prior to either procedure. In all eight categories, college-aged students are the least likely to have any kind of physical limitations. Like the previous two slides’ statistics, any kind of physical difficulty triples when one ages out of the 18-24 age group and into the 25-44 age group. It triples again when one ages into the 45-60 group.
- Certain types of heart diseases can prevent an individual from joining the registry and becoming a donor. Like other chronic diseases, the age group the least likely to be stricken with any circulatory diseasees is the college-aged individuals, and the one most likely is 45-60 year olds. Again, the chances of an individual having any type of chronic disease, such as heart disease, goes up with age. In fact, the chance of one having any of these heart diseases when he/she is between the ages of 45 and 60 is about ten to eleven times higher than if he/she were between the ages of 18 and 24.
- Chronic lung disease, such as emphysema and asthma, can exclude an individual from joining the registry and becoming a donor. The disease, whatever it may be, can cause breathing problems for the individual during either procedure. However, the breathing problems could become much bigger when that individual is put under anesthesia for bone marrow procurement. While college students can suffer from asthma (as shown in the third category “Still Has Asthma”), they are not as likely to suffer it as an individual who is in either the 25-44 age group or the 45-60 age group. In all five categories, college-aged students are the least likely to have any of the respiratory diseases.
- If an individual has any form of cancer or is a cancer survivor, he/she must be excluded from the registry. The cancer could spread from his/her marrow or stem cells into an already sick patient and could possibly kill them. Like chronic diseases, college-aged students are the least likely to have cancer (although it can strike someone of any age at any time). In this slide and with these statistics, it is clear to see that healthy, college-aged males are asked to be donors because they will be least likely to have prostate cancer. College-aged females are still healthy enough, in terms of being cancer-free, to ask to be on the Be the Match Registry; however, they are at a slightly higher risk of getting cancer than men.
- This section will give an example of how a marrow drive works. The drives used in this section (combined) occurred after the Fourth of July weekend at both Valencia Community College campuses and their health fairs. In all, 50 college students signed up during these drives to be on Be the Match registry.
- About a half of an hour before the event starts, at least one intern or volunteer and Adele or Cecelia (Administrative Assistant at Kids Beating Cancer) will set up a booth consisting of one of the organization’s banners (pictured on the left); a tri-fold presentation board with pictures of past & current patients (pictured on the right); a donation box; and handouts about KBC, Be the Match, and the donation process. Everything at the booth has one message: one child lost is one too many.Photo credit: Ashley Kohrt
- When someone passes by our booth, we ask if they wish to join the Be the Match Registry. We explain that it is a very simple process: filling out a form and swabbing their cheeks (so that their tissue can be typed). If they have any questions, all they have to is ask, and we will do our best to answer any questions. If they are not sure about joining, they can take a Q & A booklet, provided by NMDP, that will answer any questions they may have. We also give them a KBC pamphlet that contains the organization’s contact information if they do decide to become a donor. If they do not wish to join, we ask if they want to donate any money or want to know about any volunteer opportunities. If they want to know more about how to volunteer, we hand them a KBC pamphlet and tell them to contact Adele Doctor, whose e-mail address is on the back.Photo credits: Adele Doctor, Ashley Kohrt
- If an individual does decide to sign up, we hand them a form and a pen. While they are filling the form out (pictured on the right), we will label the four swabs in the kit (pictured on the left). After they done filling out the form, we will look over to make sure everything is filled out. Once that is done, we make sure they take their copy of the form they just filled out (indicated by the black arrow). We will then explain to them how to properly do the cheek swab. Each swabbing is done with the same motion as if one is brushing his/her teeth but doing right against the inner cheek for ten seconds. There are four swabs, two on the top & bottom on the left side and two on the top & bottom on the right side, that have to be done. This is so there is a good cheek tissue sample that can be typed. Photo credit: Ashley Kohrt
- Once we have explained the swabbing process, we hand them one swab and repeat to them that they have to do for ten seconds. After they are done with one, we hand them another (pictured on the left); as they doing their second swab, we—or they can—place the first swab into the kit (pictured on the right). This process is repeated until they have done all four cheek swabs. After they are done, we hand them a card that goes over the main points of a phone survey they may or may not get from NMDP. They then sign and tear off the donor ID attached at the bottom of the card; this ID card is theirs to keep. We then hand them a Q & A booklet (the purpose of which was explained in slide 22). If they ever want to be taken off the registry before their 61st birthday or ever need to update their information, the number and website they need to visit is on the back. After that, we hand them a confirmation card, which they need to read over and check off “yes” or “no”. This is to make sure they understand what they just filled out and the responsibility they are taking on. If they check off “yes,” we take the form & kit back to KBC so that it can be processed and set to NMDP headquarters. If they check off “no”, we give back the form so that they can destroy it, and then we destroy their cheek swab samples.Photo credits: Erica Frommer, Ashley Kohrt
- If a student decides not to join the registry for any reason or cannot join due to a medical reason, there are other ways that he/she can help the NMDP, Be the Match, and Kids Beating Cancer. First off, they can donate money; even a small amount like $1, $5, or $10 is appreciated. All of it will towards helping individuals join Be the Match Registry, which costs $100 per person (Grow the Registry). Secondly, they can volunteer with Kids Beating Cancer—if they live in Florida—or with any other local marrow donor recruitment agency. They learn about these volunteer opportunities while visiting a Kids Beating Cancer booth and pick up a Kids Beating Cancer pamphlet. We let them know that volunteers & interns are greatly needed and are an appreciated help within the organization. They can also learn about other volunteering opportunities at the NMDP website. Thirdly, they can host a bone marrow/stem cell drive at their place of work, at their sorority/fraternity, or at their church. If they ever wish to do so, all they have to do while at our booth) is get a pamphlet, which has all of the organization’s contact information, and contact Adele Doctor (the Director of Programs) via e-mail for a Donor Recruitment in a Box. The box will contain a KBC t-shirt, buccal swab kits, forms, a clipboard, and pens. It will be sent to the individual’s mailing address, which should be given when he/she first contacts Adele. The fourth and final way to help is the easiest: spreading the word about marrow & stem cell donation, Be the Match & NMDP, and Kids Beating Cancer. We live in the age of Facebook and Twitter, where a comment about any subject can spread like fire. With these tools, educating others about bone marrow & stem cell donation, Be the Match, and donor recruitment agencies has become easier. It has also made educating people about these topics faster; however, the only way this can happen is with help from individuals who support bone marrow & stem cell donation but cannot join or choose not to join. It is easy: “like” Be the Match & Kids Beating Cancer on Facebook and start sharing educational posts with friends and family.Photo credit: Wikipedia user MesserWoland, article “Green Ribbon”
- These are all the articles and web pages referenced in this presentation. When photos are used in the slide, photo credits are at the bottom of the notes, in bold & underlined font.