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WMDD Training

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Adriana Estrada

on 13 December 2017

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Transcript of WMDD Training

For patients diagnosed with leukemia, lymphoma and other life-threatening diseases, a marrow transplant may be their only hope for a cure.

70%
of patients who need a transplant to do not have a matching donor in their family.

They depend on Be The Match® and our supporters to find a match to save their life. Lets take a look at the history of Be The Match:
The Need
Only 50% of patients receive the transplant they need to save their life

Some patients find a match but the donor declines.

For some a match is never found

Others learn that transplant is no longer a treatment option for them.

Committed Donors Only
Younger Donors are Needed
Doctors request younger donors 90% of the time.
• Younger donors provide the best chance for transplant success.

• Younger donors provide higher volume of bone marrow and stem cells.

• 25% of all donors are current college students
The Need For Diversity
Minority donors currently represent only 39% of the Be the Match the Registry.
PBSC Donor

2 Ways to Donate:
PBSC Donation -- 75%
Marrow Donation -- 25%
Marrow Donor
Finding A Match Is HARD.
A patient’s body will only accept marrow or stem cells that closely matches the patient.
Highly specialized testing is performed to determine compatibility between a donor and patient.

1 in every 540 that join will be a match


The Registration Process
1. Educate/ Commit
2. Complete Form
Step 1: Educate
• Tell potential donors that they can help patients in need of a transplant
– Leukemia, Lymphoma, Sickle Cell Anemia and other blood diseases
– For some, it may be only hope for a cure
• Registry Guidelines
– Be between the ages of
18 and 44 (45 &up can register online at bethematch.org)
– Be willing to donate to any patient in need
– Meet health guidelines
Step 2: Complete Registration Form
• Give donors instructions on how to complete the registration form
− Contact information (personal email, not work or school on pg.1) Social Security is not required. Liscence helps locate donor years from now.
− Race/Ethnicity- hispanic or not and any/all that apply
− 1-2 contact person(s)- who can help locate you if matched?
− Page 3 questions: offers volunteer opportunities or to be contacted for future blood donations. Most of our patients use blood products throughout their treatment!
− Back of Middle page: Signature -
no signature= not added to the registry!

Donor Concerns
• What if my boss won’t allow the time off or I have young children?
– We help with obtaining employer support and offer childcare funding
• What if I get time off but it is unpaid?
– NMDP Donor Assistance Fund
• Where do I have to go to donate?
– San Antonio for PBSC or Fort Worth for Bone Marrow
• What if I live far away?
– Airfare, hotel and meal expenses are covered
• What if I don’t have transportation?
– Car rental, taxi service, or we’ll pick you up
"If you can't see the good, MAKE the good!" -Rowan Windham

Start Time: 10:00 AM

End Time: 4:00 PM

Dress: Comfortable, breathable outdoor clothes, Tennis shoes.

Please remember to wear sunscreen!

Welcome to the Cancer Advocacy Movement!
Questions?

Adriana Estrada
adriana.estrada@gencure.org
210.857.5990
Sharing is Caring!
Search connectforlife on Facebook
or @connectforlife on twitter

Before, During and After:
Please post pictures, share stories, SPREAD THE WORD!

Patients and their families are watching. Let them know
"no one fights alone."

3. Swab Cheek
Step 3: The Cheek Swab

Collecting cheek cells with swab kit
– One swab per region
– Four “corners” of mouth
– Swallow before each swab
– Back and forth movement for 10 seconds

Place swab in holder (no specific order)
The Power of Social Media
Tag yourself at your HEB to let friends and family know where they
can get swabbed!

Send photos to angelica.sandoval@gencure.org

Take photo or video horizontally not vertically

Always have 3 or more non-employees people in a photo. Employees can
be photographed alone.



From Our Team and Our Patients -- Thank you!!!
Commitment
How willing are you to donate to someone that you don't know?
How likely are you to agree to give a blood sample for further testing if you were a potential match for a patient?
If you were told that you were a match for someone, how likely is it that you would actually follow through and donate?
If you are selected as the final match for a patient, the average time involved is 20 to 30 hours spread over a 4 - 6 week period. How willing would you be to make that time commitment to donate?
You will get very limited information about your patient when you are called as a potential match. Age, gender and diagnosis. After your donation, you will be asked if you would like to write anonymous letters for 1 year.

One year after the donation, you will be asked if you would like to know more about them or even
meet them!!
(check out meetings on youtube!)

You don't have to be strangers forever!
The blood sample is very simple and usually take under 10 minutes! This very small blood sample is required to make sure that you are the best match for your patient and we make sure to schedule it at a time that works best for you.

Matching means your cells wont realize they are not in you and they will give your patient a new, healthy working blood system!
Before you join the registry, it is very important that you are committed and willing to donate if you are a match. Some patients only have one donor on the registry. If that one person declines to donate, there is no back up plan.

Ask:
If Be The Match was willing to pay for everything, work around your schedule and make it as free, easy and safe as possible for you, would step up to save someone's life?

Explain:
We will work around your schedule and will not ask you to donate unless we are confident that it is the best option for the patient and that it is safe for you.
20-30 hours seems like a lot, but it is spread out over about a 2 month period. Usually well over a month. Furthermore, this time commitment is broken into tiny pieces of time.

Things Considered:
"you are a possible match" call (maybe you have lots of questions)
information session (maybe your family has a lot of questions)
blood sample/ travel time is accounted for
medical evaluation (determines if donation is safe for you)
donation travel time
donation day
travel home
A little of your time could give someone else a LIFETIME

-Goal: 10 new registered donors per store
-Raise awareness for organ, tissue and cornea donation
-Invite the community to write thank you cards to donors

is celebrated globally on the third Saturday of September in more than 50 countries around the world! Our objective? To celebrate those who gave the gift of life to a stranger and invite others to join our community of registered members spreading awareness and hope.
WMDD Training 2017
Who Are We?
As we invite the community to join the registry as a potential life saving donor, we want to ensure they are
committed.


Each person registering will be required to fill out the survey on the front of the registration form. If someone seems uncertain, or answered anything not sure to not at all willing, please clarify the questions with the cheat sheet at your table.


Lets go over how you can help answer some of these questions
This World Marrow Donor Day, we would like to celebrate the donors who said yes to saving a life!

GenCure Community Engagement Results:
Second highest in nation for Hispanic donor search requests
More then 1,200 donations of marrow and peripheral blood stem cells (PBSC) for patients in 44 countries; 30% of donations are for pediatric patients. On Sept. 16th our awareness efforts will make these numbers grow!



How do I know a potential donor is committed?

Outpatient surgical procedure
Post-donation side effects; soreness in lower back and hip
Avg. 3-7 day Recovery

Filgrastim injections
Pre-donation side effects; bone and muscle ache
4-6 hour apheresis procedure
Avg. 1-2 day recovery

Travel expenses
(airfare, hotel) paid

Mileage, out-of-town meals and other reasonable expenses such as child care, dog kennel etc.. are reimbursed to the donor

Unpaid time off may be paid; grant
State employees have up to 40-hours benefit for donating marrow/stem cells

Don't Worry

Our Mission on WWMD:
Raise awareness about the need: There are thousands of patients hoping for their cure.

Thank the undercover heroes if/when they approach you! There are also thousands out there! They each have a story.

Invite the community to join the registry. The power to save patients lives in your voice!

Invite everyone to write a thank you note to all our future donors! We will deliver them as they donate.
To-date,
250,000
members in local donor base; 80% ethnically diverse
60-county service area from Austin to the Rio Grande Valley
Focus on Donor Commitment;
55%
of donors will decline when contacted
https://www.donatelifetexas.org/
We would also like to offer an opportunity for the public to register as organ, tissue and cornea donors.
Are you a donor? Check your ID for the heart! Forms will be available to register if they wish or they can register online.

Organ, Tissue and Cornea Donation
Did you know you can opt in/out of specific donations at any time? For more info visit:
And now lets close with the story of Samuel and Sarah- with your help this WMDD more stories just like this will be made possible!
Click the video to see a donor's vlog of his experience!
Volunteer keeps: form and swab envelope

Donor keeps green sheet: temporary ID/ Mail in opt out card in case they change their mind.
Soonest they can match=2 months from submission. They stay on the registry until 61st birthday.
Full transcript