LSA celebrates the 1st anniversary of the 4th edition of theLiving with Lowe Syndrome, A Guide for families and Professionals.
LSA families participate in 3rd phase of a behavioral study
“The Cross System Research Program” conducted by the University of Birmingham, United Kingdom to further understand the behavioral characteristics or people with Lowe syndrome and how these characteristics develop and change as people get older.
LSA enters into five year licensing agreements with Lowe syndrome organizations from Italy, AISLO, France, ASI and the United Kingdom LST to translate the Living with Lowe Syndrome, A Guide for Families and Professionals.
The 4th edition of The Living with Lowe Syndrome, A Guide for Family and Professionals is complete and tripled in size from its original edition published in 1987. Over 350 free copies mailed to LSA parents, LSA medical board along with various international agencies and organizations.
12th International Conference on Lowe Syndrome was held in Oak Brook, Illinois. 187 people representing 60 families and medical, scientific and education professionals participated. 5 new families attended their first conference and 10 families were assisted by the conference scholarship fund. 40 boys / young men with Lowe syndrome attended with their families
LSA co-sponsors the 49th American Society of Cell Biology (ASCB) in San Diego, a satellite meeting at, to present recent findings on the Cell Biology of Oculocerebrorenal Syndrome with the Lowe Syndrome Trust.
LSA awards $5000 grant to GeneDx, MD for use in Molecular Testing for OCRL.
LSA awards $4000 grant to Baylor College of Medicine, Houston to continue support of OCRL full sequencing and OCRL enzyme tests.
LSA moves the telephone number to Texas.
LSA awards $25,000 grant to CT researcher to conduct Phase II of the 2008 Comprehensive Survey on Lowe Syndrome – Analysis and Report
The 2008 Comprehensive Survey of Lowe Syndrome data entry portion of the on-line survey closed on January 31st with 137 (78.3%) participants completing their extensive survey.
Invitations to participate in the online 2008 Comprehensive Survey of Lowe Syndrome went out to 175 participates.
AISLO volunteers begin Italian translation of 2008 Comprehensive Survey on Lowe Syndrome to enable their family members to participate in the LSA funded on-line survey.
LSA awards second year grant of $25,000 to the University of Pittsburgh researcher.
LSA awards second year grant of $25,000 to Yale University researcher.
LSA celebrates 25 years!
11th International Conference on Lowe Syndrome held in Orlando, Florida. 196 people representing 60 families and medical, scientific and education professionals participated. 9 new families attended their first conference and 9 families were assisted by the conference scholarship fund. 42 boys / young men with Lowe syndrome attended with their families. The LSA held a celebration to commemorate the 25th anniversary of the LSA and presented a special tribute to LSA Founder, Kaye McSpadden. In addition, Dr. Richard Lewis and Dr. Robert Nussbaum were presented with Legacy Awards.
LSA awards $24,000 grant to CT researcher for 2008 Comprehensive Survey on Lowe Syndrome.
Phase I: Development and Design of the 2008 Comprehensive Survey of Lowe Syndrome begins. The main goal of the survey is to update the 2000, 3rd edition of the Living with Lowe Syndrome book.
LSA Survey Team lead by Dr. Zelig Dolinsky, Debbie Jacobs, LSA President, Christine Knight, Director, MSAB, Jeff Smith, LSA Board member, Ben Knight, LSA parent and numerous LSA parent volunteers conduct the first phase of the 2008 Survey – The Ranking Study to determine which body sections will be updated from the original 1990 Study.
LSA Board of Directors appoints, Christine Knight Director, Medical and Scientific Advisory Board.
LSA Board of Directors vote to fund the research project to update to the 1990 Comprehensive Survey on Lowe Syndrome.
Ann Keefer, LSA Treasurer resigns after serving 5 years.
Jane Gallery appointed by the Board of Directors to continue Treasurer duties.
LSA President, Debbie Jacobs, is a guest speaker at the International Conference on Lowe Syndrome in Formignana (FE), Italy sponsored by the Italian Lowe Syndrome Organization, AISLO.
LSA awards $20,000 grant to the University of Pittsburgh researcher.
LSA awards $20,000 grant to Yale University researcher.
New Zealander, Rob Thomson, travels the world to raise donations for LSA by skateboarding and cycling.
Historic LSA Clinical Database exploration meeting at Mayo Clinic, Rochester, MN.
10th International Conference on Lowe Syndrome held in San Diego, California. 174 people participated from 32 different states and 4 different countries. 18 new families attended their first conference and 8 families were assisted by the first-ever conference scholarship fund. 34 boys and young men with Lowe syndrome attended with their families.
Fiona Fisher, Scotland becomes the first international LSA board member.
First car is donated to the LSA through the “Donate your Car” program.
Debbie Jacobs elected fifth President of the LSA.
Historic “Changing of the Guard” takes place after 20 years. LSA address changes and headquarters move to Texas while the LSA telephone number moves to Minnesota.
First-ever, LSA conference scholarship fund begins with funds from the “Cartridges for Kids” recycle program.
“On the Beam” gets a makeover from a professional graphics designer.
LSA moves its web and list serv services to Total Choice.Com.
Parent Directory changes its name to Family Directory and includes 228 families from the U.S. and 25 other countries.
New brochure published to promote LSA medical research fund.
Annual Parent Directory includes 209 families from the U.S. and 19 other countries.
First-ever gathering of Lowe syndrome families takes place in Italy, leading to the formation of AISLO. LSA Living with Lowe Syndrome booklet published in Italian.
Income for the year exceeds $100,000 for the first time.
LSA awards three medical research grants to biomolecular and genetic researchers. Total amount awarded: $45,000.
LSA joins the Brain and Tissue Bank for Developmental Disorders at the University of Maryland.
LSA establishes credit merchant account in order to accept donations and payments by credit card.
Changes at NIH result in cancellation of the Lowe syndrome clinical research project. Dr. Lawrence Charnas leaves NIH. LSA awards $5000 research grant to Dr. Charnas to enable him to continue work on project in new location. LSA also awards $6000 to Dr. Lorraine Racusen for her proposal to develop renal tubule cell lines for Lowe syndrome research projects.
2nd LSA president, Judy Dinofrio, completes 3-year term. Candy Smith elected new president. Candy undertakes project of revising Living with Lowe Syndromebooklet.
LSA decides to change terminology from Lowe’sSyndrome Associationto Lowe Syndrome Association.
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.
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.
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.
Dr. Richard Lewis announces the accomplishment of the regional mapping of the Lowe’s syndrome gene on the X-chromosome. LSA awards Dr. Richard Lewis and Dr. Robert Nussbaum 1st LSA Medical Research Award. LSA establishes Scientific Advisory Committee, a group of distinguished physicians and scientists.