Stem cell research is leading us toward possible genetic therapies that may one day be able to help people with VHL. One concern will be ethical sources of stem cells. One possible source is cord blood, which may be frozen now in case it might be needed in the future by the individual, or shared with others in need.. Cord blood banks are giving hope to many people who would otherwise have spent months or years seeking a satisfactory match for a bone marrow transplant.

"Cord Blood" is the blood that remains in the umbilical cord and placenta following birth. Cord blood stem cells have the ability to treat the same diseases as bone marrow with significantly less rejection. Cord blood is collected after the baby is born and the umbilical cord has been clamped and cut. It is painless and safe for both baby and mother. When cord blood is collected and stored, the stem cells are immediately available for transplantation. Children make up a large portion of the 10,000 individuals each year who are unable to find a transplant in time.

Years of medical research have led to an amazing discovery: the blood in a baby’s umbilical cord. First used in transplant in 1988, umbilical cord blood is a plentiful and rich source of stem cells -- the building blocks of the immune system -- that can be used to treat a variety of life-threatening diseases including leukemia, other cancers, and blood and immune disorders. In just the last few years, thousands of acutely ill patients have received treatment because of this tremendous medical advance.

Approximately 25% of these transplants have come from siblings, with the rest coming from donated cord blood samples. As more and more families save their cord blood, whether through donation or private storage, these numbers should increase dramatically. According to the Journal of the American Medical Association, "10,000 to 15,000 Americans each year who need a [bone marrow] transplant are unable to find suitable donors". Cord blood is an alternative transplant resource. As of the year 2000, more than 2,000 cord blood transplants have been performed worldwide.

According to the Cord Blood Registry, "It’s kind of like having a "spare immune system" - just in case - and costs about the same as three months’ worth of health insurance for your family." Doctors recommend that cord blood should be saved especially for children with unusual ethnic mixes, for whom donor stem cells would be very difficult to find.

There are many reputable cord blood banks where umbilical cords can be frozen. Obstetricians’ offices usually have brochures and may have labs they prefer to work with. Alternatively, search on the internet for "cord blood banking." Prices vary considerably. Be sure that the cord blood bank you choose is accredited by the American Association of Blood Banks (AABB) and state licensed.

The Cord Blood Donor Foundation (CBDF) is a non-profit human health and welfare organization dedicated to providing educational and public awareness and promoting further research using umbilical cord blood stem cells from live birth for the treatment of disease. http://www.cordblooddonor.org/

The Cord Blood Registry (CBR), in San Bruno, California, is the oldest and largest of the cord blood banks and registries for sharing with families in need. 1-877-267-3256 or +1-650-635-1420 or http://www.cordblood.org

Our thanks to David T. Harris, M.D., Ph.D., Director of the Cord Blood Research foundation, for his assistance in preparing this article.

As printed in the VHL Family Forum 10:3, September 2002. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.