Organizations that Promote CB Banking

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Voluntary accreditation standards are also available for medical websites.  For example, the accreditations earned by this website are listed on the  page "Honors and Memberships". The World Health Organization (WHO) has commissioned a review of 13 of these standards, including HON, URAC, AMA, BHIA, etc.
Reference:
A Risk & J Dzenowagis JMIR 2001;3(4):e28
Review of Internet Health Information Quality Initiatives 

Babies For Life registered in 2003 as a 501(c)3 human health and welfare nonprofit organization.  It is run by Dr. Gerardo  Sotomayor and his daughter Stephanie Sotomayor.  They help parents in the Atlanta area donate their child's cord blood to  Cryobanks International. 

"Babies for Life is a non-profit organization established to foster the adequately widespread collection and storage of cord blood stem cells to satisfy current scientific research and public storage needs."

Website: www.babiesforlife.org  
Phone: 770-939-6411 (office: Atlanta, GA)

Like this website, the Brady Kohn Foundation was established by parents as a public service in memory of a child who died of a blood disease.  At age two and a half, Brady Kohn acquired a virus which destroyed his immune system and gave him aplastic anemia.  He underwent a cord blood transplant with his own blood that had been saved at birth, but died of complications.  The Brady Kohn Foundation registered in 2003 as a 501(c)3 human health and welfare nonprofit organization.

The stated mission of The Brady Kohn Foundation is funding umbilical cord blood banking, research, and education.  They primarily promote public donation, and give out Viacord brochures to parents who wish to bank privately.  Their biggest achievement has been the establishment of a cord blood donation program at Delaware's Christiana Hospital, which delivers more than 7,000 babies a year.  The program is a collaboration between volunteer medical staff working with The Brady Kohn Foundaton and the Elie Katz Umbilical Cord Blood Program at Community Blood Services in Paramus, NJ.

Website: thebradykohnfoundation.org
Phone: 302-765-2875 (office: Wilmington, DE)

CareCure is a network of forums dedicated to patients suffering from Spinal Cord Injury (SCI).  This website is owned by Wise Young, Ph.D., M.D., Director of the W. M. Keck Center for Collaborative Neuorscience at Rutgers University.

The connection between this forum and cord blood banking is only indirect, but important:  Many SCI patients hope that regenerative medicine research will find a way to use stem cells to heal nerve damage.  At present (spring 2007), nerve repair has only been developed in animals, and the first human trial is just beginning in Taiwan.  In the meantime, many SCI patients seeking a stem cell "cure" have made pilgrimages to "clinics" in countries with loose medical regulations.  These clinics advertise infusions of stem cells, which may come from cord blood or from aborted fetuses.  The medical establishment believes that if these infusions are not preceded by chemotherapy to suppress the immune system, then the patient's body will simply destroy the foreign cells.  But patients continue to believe that miracle cures can be found in places like the Bahamas, India, even on boats in international waters. 

The CareCure forum contains many posts from patients seeking unregulated treatments and references to clinics which offer them.


Website: www.carecure.org

Formed in April 2005, the Coalition is organized and funded by the National Marrow Donor Program (NMDP). Numerous blood banks and medical centers have joined the Coalition.  The Mission of the coalition is to urge Congress to fund a national cord blood program under the auspices of NMDP. 

Quoting from the Coalition:
"Most importantly, we strongly believe these goals can be achieved without creating a new and unnecessary structure.  The existing national Registry already provides a single point of access to the largest listing of cord blood and adult donor options and is familiar to all within the transplant, patient, physician and research communities."

Website: cordcoalition.nonprofitoffice.com

Cord Blood Awareness was created by the private bank Cord Blood Registry.  This website tracks the status of federal and state legislation regarding cord blood banking and public education.  The Cord Blood Awareness "State by State" page is the best source of information on the web to track which states have passed legislation which requires physicians to educate pregnant women about cord blood.

Website: CordBloodAwareness.org
Email: Debbie Davis,  ddavis@cordblood.com  (office: San Bruno, CA) 

CordBloodBanking.net is a blog created by the private bank Cord Blood Registry.

Website: CordBloodBanking.net

Cord Blood Donor Foundation (CBDF) registered in 1996 as a 501(c)3 human health and welfare non-profit organization.  The mission statement and website of CBDF promote cord blood donation for transplants.  The director of CBDF is Gloria Ochoa and all members of the Board of Directors work for the private bank Cord Blood Registry.  In  recent years, CBDF has supported state legislation which will require parents to receive cord blood education as a routine part of prenatal care. 

Website: www.cordblooddonor.org  
Phone: 800-747-3319 / 650-635-1456 (office: San Bruno, CA)

Cord Blood Forum is a "non-commercial, non-political" affiliate of the for-profit public cord blood bank StemCyte. StemCyte also owns a subsidiary offering family banking, StemCyte Family.  The mission statement of the Cord Blood Forum says that their goals are to serve patients by disseminating information about cord blood transplants and to facilitate communication in the transplant community.

The Cord Blood Forum is perhaps best known for its comprehensive and searchable bibliography of medical publications about cord blood.  The bibliography is maintained by Lawrence Petz, M.D., a prestigious hematologist and Chief Medical Officer of Stemcyte.

The "forum" feature of the Cord Blood Forum is a set of question and answer pages, with separate categories for Medical Professionals, Patients, and Donors.  Questions submitted to the forum are answered by the Editorial Board.

Website: www.cordbloodforum.org

OK, readers, how many of you are gullible enough to believe that a website with a TradeMarked [TM] title is really a grassroots blog?  The mission of Cord Blood Rights[TM]  is to enact legislation which requires OB/Gyns to inform pregnant women, before their third trimester, about cord blood banking.

Website: www.cordbloodrights.org/blog/blog.asp
Phone: none (office: unknown)

A blog where all content is written by an anonymous Resident Expert who clearly works for a bank.

Website: cord-blood-info.blogspot.com
Phone: none (office: unknown)

This "free, unbiased source of information" does not reveal its owner or contact information. The website belongs to Jack Herrick. Cord-Blood.org earns income by selling advertising space on their website, and in turn Cord-Blood.org buys advertising space on other websites. Much of their content has been copied from other cord blood websites.

Website: www.cord-blood.org  
Phone: 404-303-9187 (office: Atlanta, GA)

The name of this foundation is a pun, because their mission is to fund research on the developing brain, and "CNS" is medical jargon for "Central Nervous System".  The primary focus of the CNS Foundation is to fund research on the developing brain.

The CNS foundation was formed in 2000 by the parents of Palmer Richmond, in partnership with Harvard neuroscientists Drs. Evan Snyder and Jeffery Macklis.  Dr. Macklis is on the Board of the CNS foundation and Dr. Snyder received a grant from the foundation to study the use of stem cells to repair brain damage in children.  As a result of that work, Evan Snyder, M.D., Ph.D., and lead author Jean-Pyo Lee, Ph.D.,  demonstrated that human neural stem cells slow the onset of Sandhoff disease when implanted in the brains of mice with the condition.  The study was published in Nature Medicine (2007) 13:439 - 447.

The CNS foundation is indirectly connected to groups promoting cord blood banking because the CNS foundation encourages research on cord blood stem cells for the repair of injury to the central nervous system.

Website: www.CNSfoundation.org
Phone:  866-267-5580  (office: Santa Barbara, CA)

The International Cord Blood Society (ICBS) is a Non-Profit organization founded in 1995 by Curtis L. Cetrulo, M.D., and Anthony J. Sbarra, Ph.D., both in the Dept. of Obstetrics and Gynecology at Tufts School of Medicine.  They are not registered as a 501(c)3 human health and welfare non-profit organization.  Dr. Cetrulo's son, Kyle Cetrulo, maintains the website of the ICBS.

The slogan of the ICBS is "Don't throw it away".

The Cetrulos have been active in various aspects of the cord blood industry.  The ICBS used to host an annual conference.  Currently the website hosts a forum.  In the early 2000's, Kyle worked for the private New England Cord Blood Bank, where he was responsible for setting up affiliate offices all over the world.  In 2005-05, Kyle was a consultant to the mixed public/private bank, Stemcyte, and Curtis was the medical director of a private bank in Spain, Safetycord.  In 2006, Curtis and Kyle edited a special issue of Stem Cell Reviews (vol.2, no.2) devoted to placental and pregnancy stem cells.  They contributed an editorial, "Everyone is, or should be, interested in the placenta".

Website: www.cordblood.org  
Email: kyle.cetrulo@cordblood.org

 This website belongs to the New York Blood Center, one of the world's first public cord blood banks and a founding member of NETCORD. Its mission is to promote public donation of cord blood and the role of the NY Blood Center in a national program of public banks.

Website: www.NationalCordBloodProgram.org  

Rayni Day Miracles is a non-profit fund affiliated with Cardinal Glennon Children's Hopsital in Saint Louis, MIssouri.  It was started by the mother of Rayni Worley, who received a cord blood transplant there in 1999 and is a survivor.  The mission of the fund is to support children at the hospital and to encourage cord blood donation.

Website: www.raynidaymiracles.org
Phone: 573-785-0946 (office: Poplar Bluff, Missouri)

Save the Cord Foundation was founded in 2006 by Charis Ober and Anne Sarabia.  They wish to promote cord blood awareness and advocacy among college students, by outreach through sororities and fraternities.  They support all forms of cord blood banking.

Website: www.savethecordfoundation.com
Phone:  none (office: Tucson, Arizona)

This is the only cord blood blog or forum which seems to have active reader participation.  It is run by the Malaysian cord blood bank StemLife.  The two main contributors are Sharon Low, founder of StemLife, and Kostas Papadopoulos, M.D., Ph.D., CEO of THAI StemLife.  Sharon Low, who was educated in the UK, has a very conversational writing style and often picks items of odd news to highlight (like the use of stem cells to heal anal fistulas).

Website: stemlife1.blogspot.com/
Phone:  none (office: Kuala Lumpur, Malaysia)