September 29, 2003
Press Release

JOINT PRESS RELEASE

September 29, 2003

The parties have reached a settlement in Greenberg et al. v. Miami Children's Hospital Research Institute et al., a lawsuit pending in federal court in Miami concerning the gene patent for Canavan disease, a devastating and presently incurable childhood disease.

The plaintiffs in the lawsuit were the Canavan Foundation and the National Tay-Sachs & Allied Diseases Association, two highly respected non-profit organizations dedicated to combating Canavan disease, and Daniel Greenberg and David Green, parents of children afflicted with Canavan disease.

Miami Children's Hospital is a not-for-profit institution offering world-renowned excellence in comprehensive pediatric services for children from birth to age 21.

The confidential settlement provides for continued royalty-based genetic testing by certain licensed laboratories and royalty-free research by institutions, doctors, and scientists searching for a cure.

Canavan disease is a recessive genetic disease that strikes an average of one out of four children of couples in which both parents carry the Canavan gene mutation. Canavan disease is a degenerative spongiform brain disease that causes loss of body control and death, generally before the children reach their teens. The incidence of the disease tends to be higher among couples of certain ancestry, including, for example, Ashkenazi Jewish families.

Encouraged by the plaintiffs to pursue research into Canavan disease, distinguished genetic researcher Dr. Reuben Matalon led a team of scientists that identified the Canavan gene mutation and developed a genetic screening test for the disease. During the course of Dr. Matalon's research efforts, the plaintiffs contributed financial resources and tissue samples that were ultimately used to help identify the Canavan gene mutation and develop a reliable genetic screening test.

Dr. Matalon and his colleagues joined the Miami Children's Hospital Research Institute during the early 1990s, where their continued work led Miami Children's Hospital to hold a patent on the Canavan gene and its various mutations.

Highlights of the confidential settlement, effective as of August 6, 2003, include the following:

• Canavan Foundation, National Tay-Sachs & Allied Diseases Association, Daniel Greenberg and David Green have agreed not to further challenge Miami Children's Hospital's ownership and licensing of the Canavan gene patent.

• Miami Children's Hospital will continue to license and collect royalty fees for clinical testing for the Canavan gene mutation.

• The Agreement also allows license free use of the Canavan gene in research to cure Canavan disease, including in gene therapy research, genetic testing in pure research, and in mice used to research Canavan disease.

In announcing the settlement, David Carroll, Senior Vice-President of Miami Children's Hospital, said "We can now join together to fight the common enemy: Canavan disease." Daniel Greenberg added, "We are all pleased that researchers are able to use the Canavan Gene in their efforts to find a cure for Canavan Disease." Dr. Matalon stated "This is a disease where collaboration between investigators of the disease and families of affected children remains critical for advancing knowledge, for prevention, and hopefully, for helping affected children."

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