Lowe Syndrome Association

Milestones in LSA History

Year	Month	Event
2006	October	The LSA begins selling it first fund raising item over the Internet - a custom designed bracelet designed by Kelly Kichka.
2006	June	10th International Conference was held June 23-25 in San Diego, California at the Doubletree Hotel. This conference marked twenty years of LSA conferences. 35 boys and men with Lowe syndrome attended the conference, who ranged in age from 10 months to 40 years old. In all, 174 people were in attendance.

2004	June	9th International Conference on Lowe Syndrome is held at the Sheraton Bloomington Hotel in Minneapolis, Minnesota.

2002	June	8th International Conference on Lowe Syndrome is held at the Oak Brook Hills Hotel in Oak Brook, Illinois. The participants came from 23 different states and four countries.
	October	A historic medical conference is held at the NIH entitled "Lowe Syndrome: Clinical Challenges and Solutions". The focus was on the clinical problems in Lowe syndrome, along with issues relating to treatment, and look for additional avenues for medical research.

2001	Spring	NIH Research Workshop is held in Bethesda, Maryland. The "Phosphoinositides and the Golgi complex" workshop is focused specifically on the exploration of the cellular functions disrupted in Lowe Syndrome.
	Summer	Additional DNA test becomes available. This test can be used in situations where the Lowe Syndrome history of a given family is not known. [more]
	August	A $15,000 research grant was awarded to Bonnie Blazer-Yost, Ph.D., a molecular biologist from Indiana University/Purdue University in Indianapolis, Indiana. [more] Ann Keefer walks 600 miles from Lewisburg, Pennsylvania to Indianapolis, Indiana to raise $41,778.65 for Lowe Syndrome research.

2000	June	7th International Conference at the Renaissance Waverly Hotel in Atlanta, Georgia. The largest conference in LSA history, with approximately 215 participants.
	Fall	The LSA's research fund is renamed to the "Leland McSpadden Memorial Fund for Medical and Scientific Research on Lowe Syndrome" in honor of the son of LSA founder Kaye McSpadden. Leland passed away in June 2000.

1998	June	6th International Conference held in Andover, Massachusetts. Members of the French LSA attend the conference. Board members wear red noses in recognition of fund raising efforts by the French LSA.
	November	Prenatal diagnosis of Lowe Syndrome based on an enzyme deficiency is offered as a clinical service.

1997	October	LSA publishes World Wide Web site and establishes itself in cyberspace.

1996	February	Parent membership lists 127 families from the U.S. and six other countries.
	June	5th International Conference held in Anaheim, California.
	Fall	The first-ever diagnostic laboratory capable of testing for the Lowe Syndrome DNA gene mutation opens at Baylor College of Medicine in Houston, Texas.

1995	Summer	Revised edition of booklet is published with grant from Allergan. Bookmark-style publication with "Questions & Answers" about Lowe syndrome also published.
	December	Dr. Nussbaum announces major discovery that the cause of Lowe syndrome is an enzyme deficiency. This leads to the availability of a new enzyme testing procedure for Lowe Syndrome.

1994	Summer	Changes at NIH result in cancellation of the Lowe's syndrome clinical research project. Dr. Charnas leaves NIH. LSA awards $5000 research grant to Charnas to enable him to continue work on project in new location. LSA also awards $6,000 to Dr. Lorraine Racusen for her proposal to develop renal tubule cell lines for Lowe's syndrome research projects. Second LSA president, Judy Dinofrio, completes 3-year term. Candy Smith elected new president. Candy undertakes project of revising Living with Lowe's Syndrome booklet. LSA decides to change terminology from "Lowe's" to "Lowe."
	November	Families in France organize national Lowe syndrome group.

1993	June	4th International Conference held in Downers Grove, Illinois. LSA presents Medical Research Awards to Dr's. Lewis and Nussbaum for the gene discovery and to Dr. Charnas for his work with the groundbreaking NIH study.

1992	March	Parent directory lists 108 families from 32 states and three other countries.
	July	Dr's. Nussbaum and Lewis announce in Nature that they have isolated and identified the gene that causes Lowe's syndrome.

1991	June	3rd International Conference on Lowe's Syndrome held in Oak Brook, Illinois. 115 adults and 25 children with Lowe's syndrome attend. One highlight of the program is the presentation of the preliminary results of the new Intellectual and Behavioral Assessment component of the NIH research project. Final report of the LSA Comprehensive Survey Project is published. Judy Dinofrio is elected new president. She and the Board plan for smooth leadership transition, including the development of new committee guidelines and organizational procedures. Total income for the year is almost $22,000.

1990	January	Regional support network developed.
	March	Three LSA members attend National Conference on Peer Support Training in Washington DC.
	September	Families affected by Lowe's syndrome meet in Crewe, England, at the Parents' Conference sponsored by the Research Trust for Metabolic Diseases in Children.
	November	Zel Dolinsky, Ph.D., presents results of behavior section from LSA Comprehensive Survey Project at the Behavioral Phenotypes Study Group Symposium in Wales. By the end of the year, more people are involved in different leadership roles, including membership, newsletter editor, and newsletter production.

1989	Summer	Comprehensive survey questionnaires sent out. Committee begins to analyze results.
	October	Workshop on Behavior Problems in Lowe's Syndrome held in Wilkes Barre, Pennsylvania, featuring presentations by physicians, teachers, and the Comprehensive Survey team. LSA awards second medical research grant in the amount of $7000 to continue support of gene research project of Dr. Richard Lewis. Total LSA membership is 270, including 105 families. Kaye McSpadden announces desire to step down from presidency. Board begins to plan for leadership transition.

1988	January	NIH announces plans to begin long-term comprehensive clinical study of Lowe's syndrome. LSA families asked to participate.
	June	2nd International Conference held in Oak Brook, Illinois, with 100 participants from 22 states, England, and Japan. Program features preliminary results of NIH study presented by Dr. Charnas. LSA awards 1st medical research grant in the amount of $5000 to support the work of Dr. Richard Lewis in the gene research project.
	Fall	Committee established to begin planning Lowe's Syndrome Comprehensive Survey Project. Annual parent directory lists 80 families, including families from Sweden and Northern Ireland. Willen Drug Co. gives financial support for second printing of LSA booklet. Total income for the year: over $17,000.

1987	February	Dr. Lewis announces that results of research may make gene analysis possible for some families. Published research article mentions LSA and LSA families.
	March	LSA produces slide show/videotape with donated assistance of Indianapolis media expert.
	Summer	LSA publishes most comprehensive guide ever written on the subject of Lowe's syndrome, Living with Lowe's Syndrome. Grant from Willen Drug. Co. supports the project. Over 1500 copies are mailed out internationally.
	Fall	5th Parent Directory lists 61 families. Total membership is over 200.Total contributions for 1987: $9,316. $5,000 earmarked for medical research. Research grant guidelines developed and Request for Proposals sent out.

1986	January	LSA incorporates and establishes Board of Directors. Adds additional purpose to Bylaws: "To encourage, assist and support medical research concerned with the cause, cure, prevention and/or improved treatment of Lowe's syndrome."
	Spring	New logo and slogan chosen: "Care today...cure tomorrow."
	June	1st International Conference on Lowe's Syndrome held in Indianapolis, bringing together some 75 family members, professionals and friends from 14 states, Japan and England.
	June	Dr. Richard Lewis announces the accomplishment of the regional mapping of the Lowe's syndrome gene on the X-chromosome. LSA awards Lewis and Nussbaum 1st LSA Medical Research Award. LSA establishes Scientific Advisory Committee, a group of distinguished physicians and scientists.
	Fall	LSA publishes new brochure and membership form, Care Today...Cure Tomorrow.

1985	February	Contact with Dr. Richard Lewis at Baylor College of Medicine established. Gene mapping project begins with participation of LSA families.
	June	LSA president and two members attend National Genetics Support Groups Symposium in Washington DC. New ideas gained from symposium will lead to re-organization of LSA and 1st international meeting.
	Fall	Plans for international conference to be held in Indianapolis in 1986 announced. Eight member planning committee meets for first time in Chicago. Total contributions for 1985: $2699.

1984		Plans to co-sponsor national meeting in Philadelphia fall through.

1983	January	LSA formally organized. Articles of Association state four main purposes: to foster communication among families, promote a better understanding of the syndrome, provide information, and encourage research.
	Summer	LSA newsletter changes to On the Beam. LSA receives non-profit tax-exempt status from IRS
	Fall	1st LSA Parent Directory lists 15 families. Total LSA membership of 63. Group sets goal of sponsoring national meeting. Publishes and disseminates brochure, Lowe's Syndrome Association, providing information on the syndrome and the organization. Total amount of contributions for 1983: $672.30.

1982	Summer	1st LSA newsletter published, Lowe's Syndrome Family newsletter.

1981	October	Kaye McSpadden writes letter to Exceptional Parent magazine and makes contact with six families.