About the International Society for Mannosidosis & Related Diseases

ISMRD was incorporated as the International Society for Mannosidosis & Related Diseases in Baltimore, Maryland, USA on March 10, 1999. Paul and Debora Murphy, parents of a child with Alpha-Mannosidosis, developed the organization to fill a void they perceived existed both for affected families and scientists and physicians with an interest in research and treatment modalities.

ISMRD continues to seek a future in which children with Glycoprotein Storage Diseases can be detected early, treated effectively, and go on to live long, healthy and productive lives.

It All Began with Taryn

On August 3, 1984, Taryn was born to Paul and Debora Murphy. As time passed, Taryn was diagnosed with a very rare disease called Alpha-Mannosidosis. Very little was known about it at the time. When Taryn was 15, Paul and Debora founded the International Society for Mannosidosis and Related Diseases (ISMRD). Its mission was to help build more information about this disease and six others, collectively known as Oligosaccharide Storage Diseases.

The strategy was to identify patients, form networks and encourage research. Today there are two therapies for Alpha-Mannosidosis: bone marrow transplants and enzyme replacement therapy. ISMRD now supports nine similar diseases which are grouped together as Glycoprotein Storage Diseases. To date there have been six international scientific and family conferences about them.

As we celebrate Taryn’s 40th birthday in 2024, we would like to thank Taryn, Paul and Debora for starting ISMRD, which now represents all of the nine glycoprotein storage disorders.

Like penguins in real life, our penguins show great adaptability to their harsh environment, manifested in the diseases that have afflicted their children. ISMRD’s penguins are learning to symbolically fly and overcome the disadvantages of genetics and the clinical symptoms that have ensued. Our penguins will eventually “fly” by finding treatments and cures for these diseases and, in the meantime, will find ways to support one another across nations and differences in language, religion and culture.