HOW ARE BEARS AND PWS ALIKE AND CAN THAT SIMILARITY HELP WITH
THE TREATMENT OF PWS?
By: Janalee Heinemann
Several months ago I received a call from Ralph A. Nelson, MD, PhD, FACP, who
is the Head of the Department of Internal Medicine for the University of
Illinois College of Medicine at Urbana-Champaign and also the Director of
Research at Carle Foundation Hospital in Urbana, Illinois. Dr. Nelson is a
world-renowned expert on the subject of metabolism in bears and in the area of
clinical nutrition. Twenty years ago he wrote a chapter in our first Management
of PWS book and recently told me he had never forgotten PWS and had come across
something that was very exciting. Soon after that he flew to Florida to meet
with me and since then we (PWSA-USA) have been collaborating on a research
project. Due to a non-disclosure agreement I cannot go into detail, but would
like to at least give you some basics.
For some time Dr. Nelson has been studying the denning habits of bears and
their phsysiology for over 30 years and particularly the control of appetite in
bears. Bears are remarkable since they are able to go many months without eating
or drinking. They prepare for this denning period with several weeks of ravenous
foraging and feeding. In other words, during a normal year, there is a time in
which the same animal eats as much as can be found, then later consumes
absolutely nothing. There are several substances in the ir blood that may
control this process.
Every parent of a child with Prader-Willi knows that in the first two years
of life, getting your child to eat is a problem since the appetite is usually
poor and sucking difficult. Of course, by the age of 4 to 5, most children with
PWS begin a period of runaway appetite. Dr. Nelson's research team is comparing
substances in the blood of both the child/adult with PWS and the bears that
control this process. Our hope is that this study of bears and people with PWS
will be helpful in finding a way to control appetite in persons with PWS.
Dr. Nelson's team has applied the same logic to the problems of osteoporosis
and kidney dysfunction. In each case an international pharmaceutical company is
using the research work to pursue development of treatments for those human
For more information, you can contact Jim Kane at 410-321-9788 office or
410-337-5243 home, who can answer any questions from the perspective a parent of
a child with PWS who is participating in the study. Jim can then put you in
touch with the research team. The process of submitting a sample is relatively
simple and those people with PWS who have submitted samples have taken great
pride in helping the cause.