1. Piner High School - Be THE MATCH. Save a life.
6/25/2018
Piner High School - Be THE MATCH. Save a life.
Community engagement representative: Jennifer Sawle
How many of you know someone who has or has had cancer?
And how many of you, who are raising your hands, would save their life if you could or could have? That’s kind of no-brainer, right? But it’s usually not that simple.
Okay, that leads me into my last question. How many of you know that for many patients with blood cancers like leukemia or lymphoma, their life could be saved through marrow donation?
All of us here could be a possible match for someone battling blood cancer… we could be their cure. That’s what I’m here to talk to you about today.
Operated by the National Marrow Donor Program®

2. Every 3 minutes Each hour more than 6 people die 152 people each day.
6/25/2018
Every 3 minutes
someone in the United States is diagnosed with a blood cancer.
Each hour more than 6 people die
from a blood cancer — that’s nearly
152 people each day.
Operated by the National Marrow Donor Program®

3. 6/25/2018
Be The Match® is the world’s leading nonprofit organization focused on saving lives through marrow and cord blood transplantation
That’s where Be The Match comes in.
Since 1987, 74,000 people have received marrow transplants facilitated by Be The Match.
Be The Match® facilitates more than 6,000 transplants per year, connecting patients with their donor match for a life-saving marrow or umbilical cord blood transplant. You could be someone’s cure as a member of the Be The Match Registry®, a financial contributor or a volunteer. Be The Match provides patients and their families one-on-one support, education, and guidance before, during and after transplant.
Operated by the National Marrow Donor Program®

4. 6,400 In 2015 alone… 200 research studies underway
patients received a marrow transplant
6,400
added to Be The Match Registry, including
537,000 new potential donors
50% with diverse ancestry
Volunteers donated
131,000 hours, a
value of more than $3 million
$3.4 million in patient
assistance to 2,000 families
In 2015 alone:
6,400 patients received a marrow transplant
More than $3.4 million was provided to more than 2,000 patients to help ease the financial burden of uninsured costs associated with treatment
More than 200 research studies were underway through our research program. These studies continue to help more patients get the transplant they need and improve transplant outcomes.
537,000 new potential donors were added to the Be The Match Registry – 50% of them with diverse ancestry
And, volunteers donated 131,000 hours — a value of more than $3 million
Our goal is to see these numbers even higher next year!
Operated by the National Marrow Donor Program®

5. How does “the match” happen?
6/25/2018
How does “the match” happen?
Donors and patients are matched by their human leukocyte antigen (HLA) type.
More complex than matching blood types
HLA is inherited
70% of patients don’t have a fully matched donor in their family
The closer the match, the better
the outcome.
Donors and patients are matched by their HLA type (basically their “tissue type”). When people join Be The Match Registry, they provide a sample of their DNA by swabbing their cheek, which is what helps determine whether you could be a close bone marrow match for a patient.
The best marrow transplant outcomes happen when a patient’s HLA and the HLA of a registry member or cord blood unit closely match. This is much more complex than matching blood types. HLA is a protein – or marker – found on most cells in your body. Your immune system uses HLA markers to know which cells belong in your body and which do not. There are many HLA markers that make a person’s tissue type unique; however, matching certain markers is what is critical to a successful transplant.
HLA markers are inherited, but 70% of patients who need a transplant do not have a fully matched donor in their family.
If a registry member is asked to donate, that means they are the closest HLA match to the patient – the best donor. A close match between a donor’s and a patient’s HLA markers is essential for a successful transplant outcome.
Operated by the National Marrow Donor Program®

6. 6/25/2018
MYTHS VS. FACTS
So now I want to walk through a few common myths and facts regarding marrow donation – I know there’s a lot of assumptions out there about marrow donation – regarding pain, recovery time, etc. – but I want to set the record straight. Before we dive in, I’m curious if anyone here has heard negative things, or assumptions, about marrow donation and would be willing to share? (Leave time for student’s responses)
Operated by the National Marrow Donor Program®

7. MYTH All donations involve surgery.
6/25/2018
All donations involve surgery.
MYTH
The first is the assumption that ALL marrow donations involve surgery.
(CLICK)
That’s a myth.
Operated by the National Marrow Donor Program®

8. FACT The majority don’t.
6/25/2018
The majority don’t.
Most are done using a peripheral blood stem cell (PBSC) donation procedure. Whichever way you donate, you’d typically go home the same day.
FACT
The fact is that the majority of donation procedures DO NOT involve surgery.
Most are done using a peripheral blood stem cell (PBSC) donation procedure. But, whichever way you donate (through PBSC or Marrow procedure) you’d typically go home the same day.
So let’s touch on the two ways to donate quickly…
Operated by the National Marrow Donor Program®

9. PBSC (peripheral blood stem cell) donation MOST COMMON WAY TO DONATE
6/25/2018
There are two ways to donate.
 PBSC (peripheral blood stem cell) donation
 MOST COMMON WAY TO DONATE
MARROW donation
If you match a patient in need, there are two ways to donate. The patient’s doctor chooses the donation method that is best for the patient.
PBSC (which stands for “peripheral blood stem cell”) donation is a non-surgical, outpatient procedure. The donor receives daily injections of a drug, called filgrastim, for 5 days prior to donation to increase the number of blood-forming cells in the bloodstream. These cells are then collected during donation through apheresis (A procedure where some of the donor’s blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is then returned to the donor through the other arm). The donor may experience headaches, bone or muscle aches for several days before collection. These are side effects of filgrastim and typically disappear within six days of donating. Donors are typically back to their normal routine in 1 to 2 days. This is the most common way to donate today, and is requested by patient’s doctors 75% of the time.
Marrow donation is a surgical, typically outpatient, procedure that takes place in a hospital operating room. In this type of donation, the donor is under anesthesia and feels no pain during the procedure. While the donor is under anesthesia, doctors use a special needle to collect marrow from the back of their pelvic bone. After donation, donors may feel soreness in the lower back. Typically, the hospital stay for marrow donation is from early morning to late afternoon, or occasionally overnight for observation. 63% of donors don’t spend the night in the hospital; 36% are hospitalized overnight; 1% spend two or more nights in the hospital. Donors are typically back to their normal routine in 2 to 7 days.
Operated by the National Marrow Donor Program®

10. Transplants by Cell Source Nearly 6,400 in 2015
Total of 74,000 transplants since 1987

11. We need to increase the ethnic diversity of the registry.
6/25/2018
We need to increase the ethnic diversity of the registry.
Black/African Americans, 71 find a match … 29 do not
Hispanic/Latino, 83 find a match … 17 do not
Asian/Pacific Islanders, 80 find a match … 20 do not
American Indian/Alaska Native, 84 find a match … 16 do not
Caucasian, 97 find a match … 3 do not
In addition to the need for young potential donors, we also need to increase the ethnic diversity of the registry.
Right now, a patient’s likelihood of finding a matching bone marrow donor or cord blood unit on Be The Match Registry® ranges from 66% to 97%, depending on ethnic background.
Adding more members who increase the ethnic diversity of the registry increases the variety of tissue types available. This helps more patients find the match they need.
Operated by the National Marrow Donor Program®

12. MYTH Donating is painful and involves a long recovery.
6/25/2018
Donating is painful and involves a long recovery.
MYTH
Another common assumption is that donating is painful, and that it involves a long recovery time.
(CLICK)
Again, that’s a myth.
Operated by the National Marrow Donor Program®

13. 6/25/2018
Some PBSC donors report mild flu-like symptoms that vanish within a few days.
Typically back to normal routine: 1-2 days
Marrow donors can expect to feel some soreness in their lower back for one to two weeks afterwards.
Typically back to normal routine: 2-7 days
FACT
The facts are that there can be minor symptoms or soreness as a result of marrow donation, but they are typically mild and the recovery times are short. It is important to remember however that every donor’s experience is different, and perceptions of discomfort can vary from person to person.
Some PBSC donors report mild flu-like symptoms as a result of the filgrastim drug that they take in the 5 days leading up to their donation. But those flu-like symptoms usually vanish within 6 days of donating. And they are typically back to their normal routine 1-2 days after donation.
Marrow donors won’t have any pain during donation because they would be under anesthesia. They can expect to feel some soreness in their lower back for one to two weeks after their donation, but they are typically back to their normal routine only 2-7 days after donation.
Operated by the National Marrow Donor Program®

14. MYTH Donating is dangerous and weakens the donor.
6/25/2018
Donating is dangerous and weakens the donor.
MYTH
Another common assumption is that donating is dangerous, and that it weakens the donor.
(CLICK)
Once again, that is a myth.
Operated by the National Marrow Donor Program®

15. FACT PBSC and Marrow donation are very safe.
6/25/2018
PBSC and Marrow donation are very safe.
Only a fraction of a donor’s marrow is needed – the immune system stays strong and cells replace themselves within a few weeks.
FACT
While no medical procedure is without risk, whether donation is done through the PBSC or the marrow method, there are rarely any long-term side effects.
The amount of marrow donated is only a fraction of the body’s total marrow. So, the amount donated does not weaken the donor’s immune system, and the marrow naturally replaces itself within a few weeks.
Additionally, Be The Match carefully prescreens all their potential donors to ensure they are healthy and that the procedure is safe for them. And they are there for you every step of the way with support and information.
Operated by the National Marrow Donor Program®

16. MYTH Donating is expensive and it’s difficult to make time for it.
6/25/2018
Donating is expensive and it’s difficult to make time for it.
MYTH
Another assumption is that donating is expensive and that it’s difficult to make time for it.
(CLICK)
So you are probably catching on and can guess, that is a myth.
Operated by the National Marrow Donor Program®

17. FACT Donors never pay to donate.
6/25/2018
Donors never pay to donate.
Out-of-pocket expenses are covered.
Be The Match provides scheduling support.
Toolkits and other resources are available to donors as they discuss their time commitment with employers and educators.
FACT
The fact is that donors NEVER pay to donate. Any out-of-pocket expenses like travel and lodging (if needed) are covered by Be The Match.
Donors are also never paid FOR their donation.
Although the commitment to donate does require 20 – 30 hours over 4 – 6 weeks (for appointments and the actual donation procedure), employers and teachers are typically very accommodating to donors. Plus, Be The Match provides toolkits and other resources to support donors as the discuss their time commitment with employers and educators. If needed, Be The Match staff can also reach out to those people on behalf of the donor.
Other notes to consider:
Essentially you would be taking one trip to the hospital to give blood and get a physical (doctors want to be sure there is no risk to you)
The second trip is going in to the hospital for your actual donation
If you will do PBSC, we will send a home health nurse to you to administer your Filgrastim shot – can visit you in your dorm, class, sporting event, what have you!
In addition to reimbursing donors for any expenses incurred, we will also pay for you to bring a close friend or family member to your appointments. Consider this a “donor buddy”.
Hopefully walking through some of these common misconceptions about donation helped to dispel those myths for you and ease any concerns you may have had.
Operated by the National Marrow Donor Program®

18. Meet health guidelines
WHO CAN join?
6/25/2018
Fully committed
Meet health guidelines
AGE
So hopefully by now you’re thinking, “This sounds great - can I join?”.
Well, as long as you are between the ages of (CLICK), fully committed to helping ANY patient in need (CLICK), and meet the health guidelines (CLICK), joining is easy.
The age range limit is in place because of the stat that we touched on earlier – marrow transplant doctors request young donors over 95% of the time. It costs Be The Match money to add each new member to the registry, so we want to make sure we’re paying to add people that will have the best chance of helping to save a life.
And we just discussed the importance of bringing fully committed potential donors onto the registry – we don’t want people joining who may ultimately let a patient down by backing out or not responding.
The health guidelines exist to make sure that a possible marrow donation would be safe for both the donor and the patient - the guidelines are part of the registration process and are provided to potential donors before joining the registry.
--If you meet these guidelines, you may have the “hero gene” 
Operated by the National Marrow Donor Program®

19. HEALTH GUIDELINES
6/25/2018
THESE CONDITIONS PREVENT YOU FROM JOINING:
Hepatitis B or C
HIV
Organ, marrow or stem cell transplant recipient
Stroke or TIA (transient ischemic attack)
THESE CONDITIONS REQUIRE FURTHER EVALUATION:
Autoimmune illness
Brain injury or surgery
Blood cancer or disorder
Cancer
Chronic neck, back, hip or spine pain
Diabetes
Heart diseases, a heart attack, or other heart-related issues
Currently taking certain prescribed medications on a regular basis for pain, heart issues, cancer, and other serious diseases
Here is a general overview of the health guidelines for joining the registry. There are height and weight guidelines to ensure safety for the donor. There are also certain conditions that prevent someone from joining the registry – like Hepatitis B or C, HIV, a past organ, marrow or stem cell transplant, and a stroke or TIA. Other conditions that require further evaluation prior to joining include autoimmune illnesses, cancers, chronic neck, back, hip or spine pain, diabetes and heart related issues (like heart disease or a heart attack).
Operated by the National Marrow Donor Program®

20. HOW DO I JOIN? join.bethematch.org PROMO CODE: PinerHigh
6/25/2018
SWAB KIT WILL BE MAILED TO YOU 1
SWAB YOUR CHEEKS 2
join.bethematch.org
PROMO CODE: PinerHigh
MAIL YOUR KIT BACK 3
Joining is simple. Just visit join.bethematch.org, and use this promo code to get started!
(Insert promo code on this slide)
During the registration process you will:
Learn more about the commitment you are making.
Complete a confidential consent form.
And answer brief health questions.
Then, a swab kit will be mailed to you. You’ll swab the inside of your cheeks to provide a tissue sample (this adds your tissue type to the registry – it is not an actual marrow donation) – there are step by step instructions inside the kit to guide you. After you’ve swabbed your cheeks, you simply mail your kit back – no postage required!
Operated by the National Marrow Donor Program®

21. 6/25/2018
Then what? ANSWER THE CALL IF YOU ARE IDENTIFIED AS A POTENTIAL MATCH GIVE AN ADDITIONAL cheek swab or blood sample to confirm you are the best match ATTEND AN INFORMATION SESSION DONATE THROUGH THE PBSC OR MARROW METHOD (BASED ON THE DOCTOR’S REQUEST) RECOVER & RECEIVE FOLLOW-UP SUPPORT FEEL GREAT, KNOWING THAT YOU GAVE SOMEONE A SECOND CHANCE AT LIFE
Andrew: donor, student at Clemson University
So what happens after you join?
Once you are on the registry, your tissue type will be included in searches for patients in need. If you are identified as a potential match for a patient in need, you will be contacted – it’s important to answer and respond as soon as possible.
You would then be asked to give an additional cheek swab or blood sample – this is to confirm that you are the best possible match for the patient.
Once the match is confirmed, you would attend an information session to learn more about the donation process.
The patient’s doctor will request whichever donation procedure is needed for their patient – either the PBSC or marrow method.
Between the appointments and the donation procedure itself, the process will take approximately 20 – 30 hours, spread out over 4 – 6 weeks.
After donation, all that’s left is a short recovery, during which you will receive follow-up support from Be The Match.
That fairly simple process will result in a second chance at life for a patient in need – someone who’s best chance at survival hinges on the marrow donation of a stranger.
As you can see here, this is Andrew – a student at Clemson University who donated through the PBSC method to a patient in need.
Operated by the National Marrow Donor Program®

22. THERE’S MORE WAYS THAN ONE!
6/25/2018
WANT TO GET INVOLVED?
THERE’S MORE WAYS THAN ONE!
I hope at least some of you are interested in getting involved with Be The Match, and contributing to this life-saving mission. If you are, there’s more than one way you can do so!
As I’ve touched on already, when you turn 18 you can join the Be The Match Registry and be available as a potential donor for patients in need who are searching for a cure – but remember, commitment is important, so only consider joining if you are fully committed to following-through.
And not to worry – if joining the registry isn’t right for you, that’s okay. It’s a commitment, and it isn’t right for everyone. But if you’re still interested in helping to save lives, there are plenty of opportunities to get involved with Be The Match in other ways. One way, is to support our Be The Match Intern, Cedrick Macanas, this Friday at the Cancer Awareness Event on campus.
Operated by the National Marrow Donor Program®

23. bethematch.org/getinvolved
6/25/2018
RAISE
ADVOCATE
VOLUNTEER
bethematch.org/getinvolved
You can raise funds for Be The Match, which would be used to connect more blood cancer patients to the marrow transplant they need, help more patients overcome financial barriers to transplant, and fund more life-saving research.
You can advocate on behalf of Be The Match – spread the word and help educate your peers, just like I’m doing today.
There are also numerous volunteer opportunities with Be The Match no matter what your skills and interests may be, or how much time you can offer.
Operated by the National Marrow Donor Program®

24. VOLUNTEER bethematchvolunteer.org SERVICE INTERNSHIPS
6/25/2018
VOLUNTEER
bethematchvolunteer.org
SERVICE INTERNSHIPS
HELP AT A LOCAL EVENT
You can also Volunteer for Be The Match. And as I mentioned earlier, no matter what your skills and interests may be, or how much time you can offer, there’s a volunteer opportunity that could be right for you.
You could volunteer to assist at a local event (like a Be The Match Walk+Run, Gala or marrow registry drive.
We also have Service Internships available for college students which can provide valuable career training and experience, helping you to build your resume. From business management and finance to marketing and medical research, a range of internships are available across the country.
If you’re interested in volunteering with Be The Match – or would simply like to learn more – please provide your address on the short evaluation form that I provided, and we’ll be sure to follow up with you! You can also visit bethematchvolunteer.org to find the most up to date opportunities and create a volunteer account where you can list your skills and experience. 
Operated by the National Marrow Donor Program®

25. 14,000 patients are WAITING FOR A MATCH…
6/25/2018
14,000 patients are WAITING FOR A MATCH…
Operated by the National Marrow Donor Program®

26. 6/25/2018
Adam 31 years old myelofibrosis, a Rare bone Marrow cancer DIAGNOSED IN July OF currently undergoing chemotherapy but Doctors say he is going to need a life- saving, bone marrow transplant. Adam is waiting for his match.
This is Adam.
Adam is a 31 year old father of three young children. He loves nothing more than spending time with his family and friends. He was recently diagnosed with myelofibrosis and is currently undergoing. Doctors have said that he is going to need a life-saving, bone marrow transplant. With over 25 million donors in the world not one is a perfect match for Adam.
Operated by the National Marrow Donor Program®

27. 6/25/2018
BUT THERE IS HOPE. MORE THAN 14,000 PATIENTS, EVERY YEAR, WHO ARE DIAGNOSED WITH LIFE-THREATENING BLOOD CANCERS OR OTHER DISEASES ARE RELYING ON MARROW TRANSPLANT AS THEIR BEST, AND SOMETIMES ONLY, HOPE FOR A CURE.
Dalton: Marrow transplant recipient
But there is hope.
More than 14,000 patients, every year, who are diagnosed with life-threatening blood cancers or other diseases are relying on marrow transplant as their best, and sometimes only, hope for a cure.
Operated by the National Marrow Donor Program®

28. PATIENTS depend ON all of US
6/25/2018
PATIENTS depend ON all of US to
JOIN, GIVE AND VOLUNTEER.
And together, we are saving lives.
It’s important to remember that patients depend on all of us (CLICK) to join, give and volunteer. (CLICK) And by doing those things, we are all saving lives!
Operated by the National Marrow Donor Program®

29. THANK YOU questions? Jennifer.sawle@nmdp.org 510.427.9336 6/25/2018
Operated by the National Marrow Donor Program®