DKMS AMERICAS Bone Marrow Donor Registration Training DKMS

______________________________________ DKMS AMERICAS _____________________________ Bone Marrow Donor Registration Training

DKMS Mission The DKMS mission is to save lives by recruiting bone marrow donors for leukemia patients. More than 18, 000 DKMS donors have helped save lives by donating their bone marrow. DKMS is the largest and most experienced bone marrow donor center in the world with close to 2 million registered donors.

About DKMS was founded in 1991 by Peter Harf and his wife's physician, Prof. Dr. Gerhard Ehninger. Their goal was simple: to build a bone marrow donor center to help other leukemia patients around the world find their life-saving match. In 2004, Katharina Harf and her father founded DKMS Americas in memory of her mother, Mechtild, opening an office in New York City to diversify the donor pool. DKMS Americas has registered over 100, 000 donors in the U. S. , which allowed more than 100 patients to receive a life-saving transplant.

Why Are Bone Marrow Donors Needed? • Every year, more than 10, 000 men, women and children could benefit from a bone marrow transplant. • Each year, more than 140, 000 people are diagnosed with blood cancer, such as leukemia or lymphoma. • Every 5 minutes someone is diagnosed with blood cancer and every 10 minutes, blood cancer takes a precious life. • Leukemia is the most common disease children in the U. S. die of. Many could be saved by a bone marrow transplant

The Donor Registry There are 7 million volunteer bone marrow donors registered in the United States. • Only 30% of patients will find a donor match within their family. • 70% of patients depend on a complete stranger; they need you to be the one to give them a second chance at life. • Only 3 out of 10 patients will receive the transplant that can save their life. Patients are most likely to match donors of their same race and ethnicity. Minorities are under-represented in the national registry.

How You Are Helping • Your pharmacies’ participation will help increase the number of bone marrow donors on the national registry • More donors will increase the likelihood of finding compatible matches and increase the number of life-saving transplants The more donors who register, the more lives can be saved.

Registration Process 1. Ask the donor if they have already registered as a bone marrow donor If the person says yes, let them know that he only needs to register as a bone marrow donor ONCE. If he is unsure, the donor should call 1 -800 -MARROW-2 to confirm whether he is already registered. 2. Inform the donor that he will be on the national Be The Match Registry, until his 61 st birthday, and can be matched with any patient in need. Not just one specific person. 3. Have the donor review the eligibility criteria. (Sign 1) Ask the donor if he has a medical condition that is not listed. If he does, then please refer to the assessment tool that will be sent to you with the shipment of donor drive supplies. 4. Have donor review the height and weight guidelines (Sign 2) 5. Have the donor read about the donation process (Sign 3). This is VERY important.

Eligibility Requirements

Height and Weight Guidelines

Donation Process

Donation Process (cont’d) • • The previous slide is VERY important It is imperative that the donor understand the two ways to donate stem cells and that they are comfortable with either procedure as the patient’s doctor determines the method of donation • • We need to be sure that our donors give informed consent If donors seem very apprehensive or unsure, do NOT sign them up. They can always sign-up on-line at www. dkmsamericas. org/marrow-donor-form

Filling out the Registration Form 1. After the donor has confirmed that he meets the eligibility requirements, knows about the two ways to donate and understands their commitment, proceed with filling out the registration form with the donor (write clearly) 2. All fields are required except for: Social Security Number, Driver’s License and Employer information, however, the SS# is extremely helpful in locating the donor quickly. All information collected is confidential. 3. At least two telephone numbers and one non-academic e-mail address must be recorded 4. The contact person should be someone who DOES NOT live with the donor, but will know where they are in future years 5. We cannot register donors with missing information or a missing signature 6. Please ensure that the donor signs and dates the form. You or another volunteer will sign as the witness

SAMPLE – Completed Registration Form

Tissue Sample Collection- A Simple Cheek Swab 1. Have the donor swish and swallow a small amount of water. 2. The volunteer will place one bar code sticker from the registration form onto the top right-hand corner of the white envelope provided. This is how we know the tissue sample belongs to the donor. 3. The donor will carefully open the packet of cheek swabs. One packet contains two swabs. Please discard the wrapper. 4. Make sure the swabs do not touch any surface other than the inside of their cheek. 4. The donor will take one swab and rub it against the inside of one cheek in a circular motion for about 10 seconds. Then, they will repeat with the second swab on the other cheek. Wait a few seconds for the swabs to dry. 5. The donor will place each swab DIRECTLY in the envelope with the barcode sticker. 6. Seal the envelope.

Financial Contributions/Fundraising • • • Ask the donor if they would like to make a monetary contribution to help DKMS finance the $65 registration cost. DKMS will use 100% of all donations to register donors and continue our life-saving work. (E. g. if 100 people register, it costs $6, 500; 500 donors = $32, 500; 1, 000 donors = $65, 000, etc. ) DKMS accepts cash, credit card, and checks made payable to: DKMS Americas. Donations are tax-deductible. Enter the donation amount in the monetary donation field on the registration form and check the payment type. You can also help DKMS fundraise by: (Some examples) - Working with other local business and ask if they would be willing to give a portion of the days sales - Send letter to local business asking for a donation to support the drive (DKMS can provide you with this) - Hold a silent auction, raffle, etc.

Final Steps • • Give the donor the pink copy of the registration form. The white and yellow copies (separated) are returned to DKMS. Forms and envelopes with the swabs inside, and all unused materials must be returned to me via Fed Ex (Fed Ex labels provided). You can either drop it off at a Fed Ex location or call 1800 -GO-Fed-Ex to arrange a pick up. PLEASE RETURN ALL MATERIALS BACK TO DKMS BY NOVEMBER 30 th, 2009!

THANK YOU Thank you for joining DKMS in the fight against leukemia. Together we can help make a difference.

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