It Started with a Postage Stamp

by Kaye McSpadden, Founder of the Lowe Syndrome Association, Inc.

When members of the Lowe Syndrome Association (LSA) opened a recent issue of the organization's newsletter, On the Beam, they were greeted with a dramatic announcement. Researchers had discovered the function of the gene that causes Lowe syndrome (also known as oculo-cerebro-renal syndrome), a rare genetic condition occurring only in males. Features of the condition include congenital cataracts, poor muscle tone, mental retardation, short stature and renal tubular acidosis (a kidney disorder).

The discovery that this rare syndrome is caused by an enzyme deficiency brought hope to LSA's 150 member families in the United States and eight other nations--hope that was only a dream 15 years ago when the organization was born.

It all began with a Search letter published in the October 1981 issue of Exceptional Parent. My then three-year-old son had Lowe syndrome, and I wanted to contact other families who had children with the condition. At the time, very little was known about the syndrome, and I had never seen another affected child. Doctors answered most of my questions by saying, "We just don't know."

After my letter appeared, six families from around the country contacted me. We soon found we had so much to share with each other that we needed a newsletter. Our efforts to find still more families paid off, and by 1986, when the group formally incorporated, we had 61 member families. That same year, we held our first international conference, an historic occasion that brought many parents together, face-to-face, for the first time.

In the next few years, LSA members began working closely with researchers, providing them with needed tissue samples as well as financial support. Through newsletters, booklets and other materials, we worked hard to provide the best possible information to families and professionals. With generous donations from supporters, the organization's annual budget grew from a few hundred dollars to more than $20,000.

In recent years, the organization has benefitted from the involvement of even more active members, a welcome change from the days when my job title might have been president/treasurer/secretary/publicist/ newsletter editor. Nevertheless, LSA:s dedicated all-volunteer leadership continues to face the challenge of trying to achieve its goals despite the distances that separate us. Recently, we have been investigating ways of facilitating communication and operations through the Internet.

This summer, LSA will hold its fifth international conference. Once again, parents, friends and professionals will gather to share a weekend together. Doctors and scientists will explain the latest research discoveries and answer parents' questions about their children's care. Family members will build friendships and offer each other understanding and support. Parents will go home empowered with new knowledge and encouraged with the assurance that they are not alone.

And it all started with a postage stamp 15 years ago. EP

First appeared in Exceptional Parent: the Magazine for Families and Professionals, (26:6) June, 1996. It is included here with their permission.