Further, the Conkels’ journey with Amalya was the catalyst for the International Institute for the Advancement of Medicine to develop a new neonatal donor program; since Amalya’s initial donation, the program has helped forty-seven other families donate to research as of this writing. Many of those were research donors, and would not have otherwise been able to donate.
Donor families are also learning more about what happens after a loved one’s body is donated to a medical school to be studied by medical students. In an article in the Atlantic in July 2015, journalist John Tyler Allen addressed the issue of empathy for deceased donors. Dr. Jerry Vannatta, the former executive dean of the University of Oklahoma College of Medicine, introduced the idea of the Donor Luncheon, at which the families of the deceased donors who were to be studied sat down with the medical students who would be doing the studying. In the past, some medical students have coped with the unusual stress of studying a dead body by referring to the body by a nickname related to the disease the donor had or to a physical characteristic. It is Dr. Vannatta’s opinion, and mine, that this is not productive for a medical student. Students need to learn not only anatomy and medical techniques, but also a kindly bedside manner and empathy. A doctor may meet a patient’s family in real life, too, so it is highly relevant training to meet the family of what are often referred to as the medical students’ “first patients.” I would venture to say that it might even be less stressful for the student to meet a family of this kind, because the student was not at all involved in the diagnosis or treatment of the deceased, or in any way connected with the reason why the person died.
“The Donor Luncheon,” Dr. Vannatta said, “provides a chance to close that gap, and to make it crystal-clear in [students’] minds that this was a person who lived a life—was a father, was an uncle, was an aunt, was a grandmother, was an engineer, was an architect.”
As these changes take place, members of the public who don’t have any point of reference in the world of medical science will start hearing about these personal stories. These positive interactions can help establish credibility, trust, and awareness in the community. This openness and transparency may lead to more confidence in making a donation for research. This awareness can help the public realize that donation to transplant isn’t the only option.
My intention is not necessarily to persuade people to donate, but to compel them to make a thoughtful decision—whatever that may be. If donation is not right for you, for whatever reason, then don’t do it. But if this story resonated with you, and you found yourself relating to this journey, then I recommend it. It’s a decision I will be forever proud of.
My son Thomas Ethan Gray donated his eyes, liver, and cord blood to medical research; in his short but treasured life, he contributed to the advancement of modern medicine.
I only hope my life can be as relevant.
ABBREVIATIONS AND ACRONYMS
AATB American Association of Tissue Banks
AOPO Association of Organ Procurement Organizations
CF cystic fibrosis
DLA Donate Life America ESRD end-stage renal disease GTEx genotype-tissue expression
HIPAA Health Insurance Portability and Accountability Act
IIAM International Institute for the Advancement of Medicine
IRB institutional review board
NAS National Academy of Sciences
NCI National Cancer Institute
NDRI National Disease Research Interchange
NIH National Institutes of Health
NISH National Industries for the Severely Handicapped
ODEF Old Dominion Eye Foundation
OPO organ-procurement organization
UNOS United Network for Organ Sharing
USCIS U.S. Citizenship and Immigration Services
WRTC Washington Regional Transplant Community
RESOURCES
For Donor Families Who Would Like More Information
If you would like to find out about the impact of your loved one’s donation, don’t be shy. Call the organization that arranged the donation (most have a Donor Family Services department; ask to speak with them), and explain that you would like more information. This happens all the time. Provide as many details and records as you can. If you like, ask them how you might be able to write a letter or even meet your loved one’s recipients. In the United States, organ, eye, tissue, and blood donations are tracked in case there is ever an FDA recall due to infectious disease.
For Human-Tissue Researchers Who Would Like to Thank the Donor’s Family
If you are a human-tissue researcher and you wonder about the donor or the donor’s family, write them a letter or an email. Tell the donor’s family what you are learning from the tissue, and invite the family to visit the lab if you like. Give your letter to the organization that provided the tissue, and ask them to deliver it to the donor’s family.
For Organ, Eye, or Tissue Recipients Who Would Like to Thank Their Donors
If you are the recipient of an organ, eye, or tissue donation and wish to connect with your donor’s family, contact your doctor or review your medical records to determine which organization provided the donation. Look for a donor ID number. Contact the organization that provided the tissue, provide as many details and records as you can, and let them know that you’d like to write a letter to your donor’s family.
Donations for Research, Training, and Education
If you or someone you know is interested in learning more about making an organ, eye, tissue, or whole-body donation, whether diseased or healthy, or for transplant, education, training, or research, you can consult the following list of organizations that may be able to help.
National Disease Research Interchange (NDRI)
8 Penn Center, 15th Floor
1628 JFK Boulevard
Philadelphia, PA 19103
Phone: (800) 222-NDRI (6374)
www.ndriresource.org/
Register to be a donor:http://ndriresource.org/Donor-Programs/ The-Power-to-Make-A-Difference/Register-to-Donate/145/
International Institute for the Advancement of Medicine (IIAM)
125 May Street
Edison, NJ 08837
24-hour service: (800) 486-IIAM
www.iiam.org
Non-Transplant Anatomical Donation
A search is available here: www.aatb.org/Accredited-Bank-Search Search for “Non-Transplant Anatomical Material” under “Tissue.”
Transplant Donation
If you live in the United States, and would like to learn more about organ, eye, and tissue donation and register your decision to be a donor, please visit DonateLife.net.
If you do not live in the United States, you can check the following website to see if your country has a registry:
International Registry in Organ Donation and Transplantation http://www.irodat.org/?p=database
In addition to registering online, it is a good idea to tell your family your wishes and leave them in writing in an advance directive along with your will and health-care proxy.
You can also designate your status as an organ donor on Facebook by following these instructions:
1. Click Life Event at the top of your Timeline.
2. Select Health & Wellness.
3. Select Organ Donor.
4. Select your audience, and then click Save.
Donate Life America
701 East Byrd Street, 16th Floor
Richmond, VA 23219
Phone: (804) 377-3580
http://donatelife.net/
Eye Bank Association of America
1015 18th Street NW, Suite 1010
Washington, DC 20036
Phone: (202) 775-4999
Fax: (202) 429-6036
www.restoresight.org
Organ-Procurement Organizations (OPOs) by State
For the most up-to-date information, see the Association of Organ Procurement Organizations website:
http://www.aopo.org/find-your-op
o/
ALABAMA
Alabama Organ Center
502 20th Street South, Suite 502
Birmingham, AL 35233
Phone: (205) 731-9200
Fax: (205) 731-6279
www.alabamaorgancenter.org
ALASKA
LifeCenter Northwest
3650 131st Ave SE, Suite 200
Bellevue, WA 98006
Phone: (425) 201-6563
Fax: (425) 688-7641
www.lcnw.org
ARIZONA
Donor Network of Arizona
201 West Coolidge Phoenix, AZ 85013
Phone: (602) 222-2200
Fax: (602) 222-2202
www.dnaz.org
ARKANSAS
Arkansas Regional Organ Recovery Agency
1701 Aldersgate Road, Suite 4
Little Rock, AR 72205 Phone: (501) 907-9150
Fax: (501) 372-6279
www.arora.org
Mid-America Transplant
1110 Highlands Plaza Drive East St. Louis, MO 63110
Phone: (314) 735-8200
Fax: (314) 991-2805
www.midamericatransplant.org
Mid-South Transplant Foundation, Inc.
8001 Centerview Parkway, Suite 302
Memphis, TN 38018
Phone: (901) 328-4438
Fax: (901) 328-4462
www.midsouthtransplant.org
Southwest Transplant Alliance
5489 Blair Road
Dallas, TX 75231
Phone: (214) 522-0255
Fax: (214) 522-0430
www.organ.org
CALIFORNIA
Donor Network West
12667 Alcosta Boulevard #500
San Ramon, CA 94583 Phone: (888) 570-9400
Fax: (925) 480-3843
www.donornetworkwest.org
Sierra Donor Services
1760 Creekside Oaks Drive, Suite 220
Sacramento, CA 95833
Phone: (916) 567-1600
Fax: (916) 567-8300
www.sierradonor.org/
LifeSharing—A Donate Life Organization
3465 Camino Del Rio South, Suite 410
San Diego, CA 92108
Phone: (619) 521-1983
Fax: (619) 521-2833
www.lifesharing.org/
OneLegacy
221 South Figueroa Street, Suite 500
Los Angeles, CA 90012
Phone: (213) 229-5600
Fax: (213) 229-5601
www.onelegacy.org
COLORADO
Donor Alliance
720 South Colorado Boulevard, Suite 800-N
Denver, CO 80246
Phone: (303) 329-4747
Fax: (303) 321-1183
www.donoralliance.org
CONNECTICUT
New England Organ Bank
60 First Avenue
Waltham, MA 02451
Phone: (617) 244-8000
Fax: (617) 244-8755
www.neob.org
LifeChoice Donor Services
340 West Newberry Road, Suite A
Bloomfield, CT 06002
Phone: (860) 545-4143
Fax: (800) 874-5215
www.lifechoiceopo.org
DELAWARE
Gift of Life Donor Program
401 North 3rd Street
Philadelphia, PA 19123
Phone: (215) 557-8090
Fax: (215) 557-9359
www.donors1.org
DISTRICT OF COLUMBIA
Washington Regional Transplant Community
7619 Little River Turnpike, Suite 900
Annandale, VA 22002
Phone: (703) 641-0100
Fax: (703) 658-0711
www.beadonor.org
FLORIDA
LifeQuest Organ Recovery Services
Ayers Medical Plaza, North Tower
720 SW 2nd Avenue, Suite 570
Gainesville, FL 32610
Phone: (352) 733-0350
Fax: (352) 733–0353
www.lifequestfla.org
Life Alliance Organ Recovery Agency
225 NE 34 Street, Suite 100
Miami, FL 33137
Phone: (305) 243-7622
Fax: (305) 243-7628
www.surgery.med.miami.edu/laora
TransLife
1560 Orange Avenue, Suite 400
Winter Park, FL 32789
Phone: (407) 644-3770
Fax: (407) 644-8876
www.translife.org/
LifeLink of Florida
409 Bayshore Boulevard
Tampa, FL 33606
Phone: (813) 348-6308
Fax: (813) 349-6515
www.lifelinkfoundation.org
GEORGIA
LifeLink of Georgia
2875 Northwoods Parkway
Norcross, GA 30071
Phone: (770) 225-5465
Fax: (770) 255-5454
www.lifelinkfoundation.org
Tennessee Donor Services
1600 Hayes Street, Suite 300
Nashville, TN 37203
Phone: (865) 588-1031
Fax: (865) 588-5903
www.dcids.org
HAWAII
Legacy of Life Hawai’i
405 North Kuakini Street, Suite 800
Honolulu, HI 96817
Phone: (808) 599-7630
Fax: (808) 599-7631
www.legacyoflifehawaii.org
IDAHO
Pacific Northwest Transplant Bank
2611 SW 3rd Avenue, Suite 320
Portland, OR 97201
Phone: (503) 494-5560
Fax: (503) 494-4725
www.pntb.org
Intermountain Donor Services
230 South 500 East, Suite 290
Salt Lake City, UT 84102
Phone: (801) 521-1755
Fax: (801) 364-8815
www.idslife.org
LifeCenter Northwest
3650 131st Avenue SE, Suite 200
Bellevue, WA 98006
Phone: (425) 201-6563
Fax: (425) 688-7641
www.lcnw.org
ILLINOIS
Gift of Hope Organ & Tissue Donor Network
425 Spring Lake Drive Itasca, IL 60143
Phone: (630) 758-2600
Fax: (630) 758-2716
www.giftofhope.org
Mid-America Transplant
1110 Highlands Plaza Drive East
St. Louis, MO 63110
Phone: (314) 735-8200
Fax: (314) 991-2805
www.midamericatransplant.org
UW Organ and Tissue Donation
450 Science Drive, Suite 220
Madison, WI 53711
Phone: (608) 262-3248
Fax: (608) 262-9099
www.uwhealth.org/organ-donation/organ-and-tissue-donation/10868
INDIANA
Indiana Donor Network
3760 Guion Road
Indianapolis, IN 46222
Phone: (317) 685-0389
Fax: (317) 685-1687
www.indianadonornetwork.org
Kentucky Organ Donor Affiliates
10160 Linn Station Road
Louisville, KY 40223
Phone: (502) 581-9511
Fax: (502) 589-5157
www.kyorgandonor.org
LifeCenter Organ Donor Network
615 Elsinore Place, Suite 400
Cincinnati, OH 45202
Phone: (513) 558-8997
Fax: (513) 558-8843
www.lifepassiton.org
Gift of Hope Organ & Tissue Donor Network
425 Spring Lake Drive
Itasca, IL 60143
Phone: (630) 758-2600
Fax: (630) 758-2716
www.giftofhope.org
IOWA
Iowa Donor Network
550 Madison Avenue
North Liberty, IA 52317
Phone: (319) 665-3787
Fax: (319) 665-3788
www.i
owadonornetwork.org
Nebraska Organ Recovery System
8502 West Center Road
Omaha, NE 68124
Phone: (402) 733-1800
Fax: (402) 733-9312
http://www.nedonation.org/
KANSAS
Midwest Transplant Network
1900 W 47th Place, Suite 400
Westwood, KS 66205
Phone: (913) 262-1668
Fax: (913) 262-5130
www.mwtn.org
KENTUCKY
Kentucky Organ Donor Affiliates
10160 Linn Station Road
Louisville, KY 40223
Phone: (502) 581-9511
Fax: (502) 589-5157
www.kyorgandonor.org
LifeCenter Organ Donor Network
615 Elsinore Place, Suite 400
Cincinnati, OH 45202
Phone: (513) 558-5000
Fax: (513) 558-8843
www.lifepassiton.org
Tennessee Donor Services
1600 Hayes Street, Suite 300
Nashville, TN 37203
Phone: (865) 588-1031
Fax: (865) 588-5903
tds.dcids.org
LOUISIANA
The Louisiana Organ Procurement Agency
4441 North I-10 Service Road
Metairie, LA 70002
Phone: (504) 837-3355
Fax: (504) 833-7894
www.lopa.org
MAINE
New England Organ Bank
60 First Avenue
Waltham, MA 02451
Phone: (617) 244-8000
Fax: (617) 244-8755
www.neob.org
MARYLAND
The Living Legacy Foundation of Maryland
1730 Twin Springs Road, Suite 200
Baltimore, MD 21227
Phone: (410) 242-7000
Fax: (410) 242-1871
www.thellf.org