The Lowe Syndrome Association

Living with Lowe Syndrome

VIII. The Lowe Syndrome Association
In 1983 a handful of parents founded the Lowe Syndrome Association (LSA). The LSA is an international, voluntary, non-profit organization made up of parents, friends, professionals, and others who are interested in Lowe syndrome. We now have members from 19 countries on five continents. The primary purposes of the LSA are to foster communication among families, promote a better understanding of the syndrome, provide medical and educational information, and encourage and support research.

The LSA newsletter, On the Beam, is published three times a year. It contains letters from parents and pictures of their children, medical and educational articles, and other helpful and interesting features. The LSA sponsors a web site (www.lowesyndrome.org) and an e-mail discussion list for members called LSA-Talk. (To subscribe, send a blank message to: LSA-Talk-subscribe@topica.com.) An annual parent directory is published for families. In addition, the LSA sponsors international conferences every two years to bring together families and professionals to exchange information and provide mutual support.

The LSA is a member organization of the Genetic Alliance (formerly the Alliance of Genetic Support Groups) and the National Organization for Rare Disorders. We also work cooperatively with l'Association du Syndrome de Lowe, a parent-professional group in France, and we are assisting efforts to form similar groups in other parts of the world. The LSA receives advice and assistance from its Medical and Scientific Advisory Board, a group of distinguished physicians and scientists who work closely with LSA leaders in areas relating to medical research and information. The LSA has awarded $70,000 in medical research grants during the past ten years. In addition, the LSA has formed a partnership with the Brain and Tissue Bank of the University of Maryland (see "The LSA and Research" in V. Research) and encourages its family members to register.

The LSA is supported financially primarily through gifts and donations from LSA members and friends. Occasionally, the LSA receives grants for special projects. LSA friends and members can also help in fundraising efforts by shopping online through one of three special sites. More information about online shopping can be found on the LSA web site.

Any person or agency with an interest in Lowe syndrome is invited to join the LSA. The basic annual membership fee is $15, although larger gifts are encouraged. Donations to the LSA are tax-deductible as charitable contributions. Parents of affected children who cannot afford membership dues may join at no charge.