Groups Promoting Cord Blood Banking

In the United States, Standards for Charity Accountability have been established by The BBB Wise Giving Alliance (also known as Give.org), a merger of the National Charities Information Bureau and the Council of Better Business Bureaus' Foundation and its Philanthropic Advisory Service.

All United States charities which are registered with the IRS as a 501(c)(3) human health and welfare nonprofit organization are required to make their tax returns, or form "990's", public record. The 990's may be viewed at Guidestar.org (registration is free), and instructions for interpreting form 990 are provided by the Nonprofit Coordinating Committee of New York.

Voluntary accreditation standards are also available for medical websites.  The most prestigious is Health On the Net, or HON, which this website has held continuously since 2001.

This is a very grassroots group started by Nita Thompson, "a racially mixed labeled 'African American' Mom, whose child is diagnosed with Sickle Cell Anemia."  This website does a good job of explaining that sickle cell disease is not just linked to your race, but also other features of your ancestry and genetics.  The group supports cord blood banking, registering bone marrow donors, and advocacy for legislation that will promote cord blood education and banking.  They participate in health fairs and register marrow donors.

Website: aablooddriveandmarrowregistry4sicklecellawareness.webs.com
Phone: 323-750-1087 (office: Inglewood, CA)
Email: AA4SCDAwareness@aol.com

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All About Cord Blood was launched in April 2010 to help Natalie Curry (this page) get more contracts as a spokesperson for cord blood banks.

Website: www.allaboutcordblood.com 
Email: Natalie@allaboutcordblood.com

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Babies For Life registered in 2003 as a 501(c)3 human health and welfare nonprofit organization.  It was 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.  Their website stated that they give parents collection kits and pick them up from these hospitals:

• Northside Hospital in Atlanta
• North Fulton Hospital in Roswell
• Kennestone Hospital in Marietta

However, in March 2009 Babies for Life stated that they are shutting down and as of July 2009 the website is vacant.  Stephanie Sotomayor now works with Connect to Cure (this page).

Website: www.babiesforlife.org  
Phone: 678-937-1706 (office: Atlanta, GA)

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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.  The Brady Kohn Foundation promotes public donation of cord blood.  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.  In June 2009, the Brady Kohn Foundation began a 2nd collection program at St. Frances Hospital in Wilmington, Delaware.

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

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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 stem cell research will find a way to heal nerve damage to the spinal cord. 

Around 2004, ChinaSCInet was organized to raise funding for a large clinical trial in China which would test the use of cord blood stem cells to heal SCI.  Dr. Wise Young is the Principle Investigator and the cord blood bank StemCyte, which operates in both the US and Taiwan, is one of the sponsors.  The incidence of SCI is 65 cases per million people in China, creating 85,000 patients per year as of 2005, whereas in the US there are 12,000 patients per year.  ChinaSCInet placed 6,000 patients per year into a double blind clinical trial which tested cord blood stem cells and/or Lithium treatments versus placebo.

The results of this trial were so encouraging that North American Spinal Cord Injury Network (NASCINet) was formed on March 17, 2009 to organize a second trial at 8 US Medical centers.  This trial relies on donated cord blood which is being provided free by StemCyte.

At the 2009 Cord Blood Transplantation Symposium, Dr. Wise Young gave a talk and stated, "90% of incomplete injury patients have a 90% chance of recovery".

Website: www.carecure.org

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After closing Babies for Life, Stephanie Sotomayer became involved with Connect to Cure,  which is also based in Atlanta, Georgia and also promotes cord blood donation.  There are two other founders, Noah Hanson and Sara Sanders.

The brochure of Connect to Cure states that "the umbilical cure is dedicated to bridging the gap between public awareness and public collection in order to meet the need of a racially diverse transplant demographic."  It is not clear what they do to bridge that gap...  Do they hand out Cryobanks collection kits? 

Website: theumbilicalcure.org
Phone: 770-828-4942 (office: Atlanta, GA)

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This site claims it is "an online resource created by parents for parents".  Too often, sites which say that are backed by commercial banks.  But maybe this time it really is true.

Website: CordBanking.org
Email: Morgan Schwartz 
Phone: 857-222-8595

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Cord Blood Awareness was created by the private bank Cord Blood Registry.  This website tracks the status of state legislation regarding cord blood education.  The Cord Blood Awareness "State by State" page is the best source of information anywhere to track which states have policies that require medical professionals to educate obstetrics patients about cord blood and their storage options.

As of October 2009, 23 states covering 70% of US births have passed cord blood education bills.

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

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In both their title and content, Cord Blood Banking Guide bears a shocking resemblance to this website, the Parent's Guide to Cord Blood.  It was launched in early 2010 and seeks to sell advertising space to banks.  Their Terms & Conditions of use state that any business information that users convey to the website becomes the property of Cord Blood Banking Guide.

Specifically:  "If you make any submission to a Public Area or if you submit any business information, idea, concept or invention to Cord Blood Banking Guide by email, you automatically grant-or warrant that the owner of such content or intellectual property has expressly granted- Cord Blood Banking Guide a royalty-free, perpetual, irrevocable, world-wide nonexclusive license to use, reproduce, create derivative works from, modify, publish, edit, translate, distribute, perform, and display the communication or content in any media or medium, or any form, format, or forum now known or hereafter developed. Cord Blood Banking Guide may sublicense its rights through multiple tiers of sublicenses."

Cord Blood Banking Guide has a web server outside of Tucson, but their office is in San Francisco.  Gosh, does that resemble any bank in the industry?  Wouldn't it be hilarious if banks bought advertising on this site and were indirectly paying a competitor?

Website: www.bankingcordblood.org
Phone/Email: none

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

Website: CordBloodBanking.net

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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)

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Cord Blood Forum is a "non-commercial, non-political" affiliate of the for-profit cord blood bank StemCyte.  StemCyte is best known as a public bank collecting donations in the US and Taiwan, but they also offer family banking.  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 best known for its comprehensive and searchable bibliography of medical publications about cord blood.  It is the best bibliography of cord blood articles anywhere.  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

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In 2007 this website described Cord Blood Banking Clearinghouse as follows: "A blog where all content is written by an anonymous Resident Expert who clearly works for a bank."

On 7 Sept 2007, the Resident Expert wrote a blog entry addressing this accusation.  He/She/It claims "I am not employed by an umbilical cord bank. I have no direct affiliation with any cord blood bank, storage facility, etc."  He/She/It goes on to admit that the blog is a "for-profit endeavor", where the Resident Expert is paid for  "contextual advertising and sponsored postings". 

Here is the best part:
"Is Cord Blood Banking Clearinghouse the perfect resource for the subject matter? Not even close. I think that sites like The Parent's Guide to Cord Blood Banks offer far superior original content and can be a great resource."

It's hard to dismiss a writer who flatters this website, but we still advise parents not to trust content from an anonymous Resident Expert.  Also, there have been very few posts since then.

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

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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)

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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 the use of cord blood stem cells to repair injuries to the central nervous system.

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

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Eric Drew has an interesting personal story: While Eric was undergoing a stem cell transplant for leukemia (ALL), a hospital worker stole his identity and used it to acquire credit cards and go on a shopping spree.  The thief became the first person convicted under the HIPAA patient privacy laws.  Meanwhile, Eric's first transplant failed, but he was able to obtain a second successful transplant with cord blood.  Since then, Eric has become a spokesperson for persons suffering from identity theft and/or cancer.  Prior to his illness, Eric had worked as a runway model.  Since his ordeal, Eric has appeared on several TV shows to speak about his experiences.  Eric Drew now splits his time between the Eric Drew Foundation and KnightsBridge Castle Inc., a company providing personal information security management and risk reduction.

The Eric Drew Foundation helps patients with living and medical expenses and runs drives to register bone marrow donors.

Reader Beware: The Eric Drew Foundation website lists patient testimonials for treatments which cover the spectrum from standard medical care to highly experimental and possibly controversial. 

Website: www.drewfoundation.org
Email: edf@drewfoundation.org (office: Los Gatos, CA)

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The International Cord Blood Society (ICBS) was 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.  The slogan of the ICBS is "Don't throw it away".  The ICBS used to host an annual conference, and in 2004 Dr. Verter (founder of this website) was an invited speaker.  In the mid-2000's the ICBS website was managed by Dr. Cetrulo's son, Kyle Cetrulo, and hosted a discussion forum for professionals in the cord blood industry.

The ICBS never registered as a 501(c)3  non-profit organization, and the Cetrulos decided that they were not doing enough with the NPO to go through the legal cost and effort of registering.  Hence in spring 2009 the web address was sold to the family cord blood bank LifebankUSA. 

Website: www.cordblood.org  

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Like this website, the Kacey Rose Foundation was established by parents as a public service in memory of a child who died of a form of leukemia (AML-M7).  Kacey Rose Mitchell first showed signs of leukemia shortly after her first birthday, but her pediatrician did not diagnose her until four months later.  At age two, Kacey received a transplant of cord blood stem cells that a family had donated 7 years earlier.  Sadly, she relapsed again several months later and passed away in spring 2008. 

The mission of the Kacey Rose Foundation is to provide assistance to families affected by childhood cancer and spread awareness regarding cord blood donation.  The foundation was launched in 2008 and is based in Connecticut.  

Website: www.kaceyrose.com
Phone:  203-439-0035 (office: Wallingford, CT)

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Mason Shaffer is a survivor of a cord blood transplant for the rare genetic disorder osteopetrosis.  His parents started this foundation to develop a cord blood donation program in the Philadelphia area.

Website: www.masonshafferfoundation.org
Contact: 

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Natlie Curry ["Cord Blood Saved My Life"] is one of the longest survivors of a cord blood transplant.  She was born in 1985 with Fanconi Anemia.  Her parents conceived another two siblings in the quest for a matching donor, and in 1989 took Natalie to Paris for a life-saving cord blood transplant.  This by itself is a very moving personal story, but in addition Natalie faced kidney failure in her late teens.  In 2006, Natalie received a kidney transplant from the same sister who donated her cord blood.

Natalie is writing a book about her personal story and runs a blog on her website.  Her goal is to raise awareness that cord blood saves lives.  Natalie has been a spokesperson for Save The Cord Foundation (on this page) since early 2009.  In April 2010, Cord Blood America announced that Natalie would be their spokesperson, and Natalie endorsed their family bank, CorCell, as "the BEST".

Website: www.nataliecurry.com
Email: Natalie@NatalieCurry.com (office: NY, NY)

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Natasha's Place was founded by Theodore Collins PhD in memory of his daughter Natasha who died of leukemia.  An interview with Dr. Collins appeared in the New Haven register on 3 Jan 2010.  Natasha was a medical student at Yale University.  Because Natasha was of mixed race, a goal of Natasha's Place is to encourage cord blood banking by persons who are minorities and mixed heritage.  Natasha's Place does this by partnering with the for-profit cord blood bank Cryobanks International, which offers both public and private storage.

The home page of the website Natasha's Place features a clip from the award-winning TV show "Real Savvy Moms" which featured moms talking about the importance of cord blood banking.  The founder of this website, Frances Verter PhD, was one of the participants, and another was our Medical Advisor, Kim Petrella RN.

Website: www.natashasplace.org
Email: info@natashasplace.org

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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)

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This is the only cord blood blog in Spanish.  It is written by Agustín Losada,  the General Manager of VidaCord, a family cord blood bank in Spain.  The blog reflects his personal views.   He writes that cord blood is a ‘valuable biological treasure that should not be wasted.’  

Website: sangredecordonblogspot.com
Email: Agustin Losada

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Save the Cord Foundation was founded in 2006 by Charis Ober and Anne Sarabia.  These two stay-at-home moms from Tucson both have backgrounds in the pharmaceutical industry and wish to promote the benefits of cord blood stem cells.  Save the Cord Foundation supports all forms of cord blood banking. 

In 2008, Save the Cord Foundation initiated a hospital-based pilot program which provides an on-site health educator, who will be solely dedicated to educating expectant mothers about cord blood and their options for banking.  This program is operating in a hospital in southern Arizona in partnership with the family bank Cord Blood Registry (CBR).

In Feb 2010, CBR launched the "Newborn Possibilities" program to offer free cord blood banking to children born at risk for Cerebral Palsy.  Initially, the program will operate at the Tucson Medical Center, where it will be supported by Save the Cord Foundation and Watching Over Mothers and Babies Foundation (WOMB).  The Newborn Possibilities Program at Tucson Medical Center will be directed by Dr. Hugh Miller, a maternal-fetal medicine specialist and the head of the local research foundation WOMB (no website).  There is also a new website to raise funding for the program, www.newbornpossibilities.com.

Website: SavetheCordFoundation.org 
Phone: 520-240-9021 (Anne Sarabia) or 520-419-0269 (Charis Ober)
Office: Tucson, Arizona

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Sarah Cohen and Dan Goldberg claim that they started this website to raise awareness of cord blood banking.  They copy content which they believe is in the public domain, and try to sell advertising to banks on the basis of their Google rank.  This foundation had to threaten them with legal action in order to get them to take down content copied from this website.

Website: stemcellumbilicalcordblood.com
Location: Official location in Canada, server located in Collegeville, PA
Email: sarahncohen@gmail.com or dan@stemcellumbilicalcordblood.com

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This is the first and longest running cord blood blog or forum.  It is run by the Malaysian cord blood bank StemLife and appears in both English and Malay.  The two main contributors are Sharon Low, founder of StemLife, and Kostas Papadopoulos, M.D., Ph.D., CEO of THAI StemLife.  Sharon Low is a biochemist who was educated in the UK, and is one of the Scientific Advisors to the Parent's Guide to Cord Blood Foundation.  She has a very entertaining 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)

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This blog from Cord Blood Registry, launched in early 2009, is an excellent source of media stories about cord blood and the latest news on cord blood advocacy efforts.  It is also current with the latest technology, offering a link to a CBR YouTube channel, a link to follow CBR on Twitter, etc.  The only downside to relying on this resource for news is that of course it will not carry any negative stories or industry gossip.

Website: blog.cordblood.com
Phone:  none (office: San Bruno, California)

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This blog from ViaCord, launched in summer 2009, features articles submitted by various members of the ViaCord team.  A unique feature of the ViaCord blog and Twitter posts is that they identify the authors of each contribution, so the reader knows if it came from their "stem cell guy" (Chief Science Officer), or a patient advocate, etc.  It is a bit more personal to know which voice is speaking.

Website: www.blog.viacord.com
Phone:  none (office: Boston, Massachusetts)

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