Our Mission

Improve the lives of persons with Lowe syndrome and their families through fostering communication, providing education and supporting research so that individuals can attain their highest potential.

WE WILL ACCOMPLISH OUR MISSION BY:

Fostering communication among families who have a member with Lowe syndrome
Promoting a better understanding of the syndrome and the potentials of individuals with this condition
Providing medical and educational information
Encouraging and supporting research relating to Lowe syndrome

LSA History

The impulse for what became the Lowe Syndrome Association, Inc. started in 1981 when a parent, Kaye McSpadden, wrote a letter to the editor of Exceptional Parent Magazine. In response to the letter, other parents with an affected son called Kaye.

One of the first to respond remembers that first conversation: “We talked for over an hour. I couldn’t believe how alike our initial experiences were, especially about how we were told our sons would fail to thrive and die before the age of two. My son was several years older than hers, so I told her what she could expect and what medicines and the like were needed. After I hung up from that conversation, I sat down and cried tears. It was as if I’d been living in a pressure cooker for years. All alone. When I read that letter and when I called Kaye, it was as if the pressure finally began to escape. A big load had been lifted from my shoulders. I was no longer alone. I had someone else to talk to about about my son. All this time, I thought my son might be the only case in existence.”

Through the conversations she’d had with other families, Kaye realized that there was a need to educate the healthcare and education community and to help families find each other for mutual support.

The next year, she launched the first Lowe’s Syndrome Family Newsletter (later named On the Beam). Three times a year she took to her typewriter and published a newsletter. Families wrote letters about their sons and professionals wrote articles helping to explain the syndrome and its needed treatments.

The membership roster grew and it became clear that we needed to do more as far as educating the medical community as well as families. Compiling up-to-date and accurate information on Lowe syndrome, she produced a document that was sent to professional pediatric ophthalmologists, genetic counselors, children’s hospitals, and other professionals from whom families might seek assistance. Then, in 1986 a few families met in Chicago and founded the Lowe’s Syndrome Association. In 1994 the name was changed to Lowe Syndrome Association.

Milestones In LSA History

1981

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

1982

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

1983

January, 1983
LSA formally organized as Lowe’s Syndrome Association.Articles of Association state four main purposes: to foster communica... Read more »
LSA formally organized as Lowe’s Syndrome Association.Articles of Association state four main purposes: to foster communication among families, promote a better understanding of the syndrome, provide information, and encourage research.

1983

Summer, 1983
LSA newsletter title changes to On the Beam. LSA receives non-profit tax-exempt status from IRS.

1983

Fall, 1983
1st LSA Parent Directory lists 15 families. Total LSA membership of 63. Group sets goal of sponsoring national meeting. Publi... Read more »
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.

1984

1984
LSA plans to co-sponsor national Lowe syndrome meeting in Philadelphia fall through.

1985

February, 1985
Contact with Dr. Richard Lewis at Baylor College of Medicine established. Gene mapping project begins with participation of L... Read more »
Contact with Dr. Richard Lewis at Baylor College of Medicine established. Gene mapping project begins with participation of LSA families.

1985

June, 1985
LSA president and two members attend National Genetics Support Groups Symposium in Washington DC. New ideas gained from sympo... Read more »
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.

1985

Fall, 1985
Plans for international conference to be held in Indianapolis in 1986 announced. Eight member planning committee meets for fi... Read more »
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.

1986

January, 1986
LSA incorporates and establishes Board of Directors and adds additional purpose to by-laws: to encourage, assist and support ... Read more »
LSA incorporates and establishes Board of Directors and adds additional purpose to by-laws: to encourage, assist and support medical research concerned with the cause, cure, prevention and/or improved treatment of Lowe syndrome.

1986

Spring, 1986
LSA board developed and adopted new logo and slogan: “Care today... cure tomorrow.”

1986

June, 1986
1st International Conference on Lowe’s Syndrome held in Indianapolis, bringing together some 75 family members, professiona... Read more »

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.

1986

Fall, 1986
LSA publishes new brochure and membership form, Care Today... Cure Tomorrow.

1987

February, 1987
Dr. Richard Lewis announces that results of research may make gene analysis possible for some families. Published research ar... Read more »
Dr. Richard Lewis announces that results of research may make gene analysis possible for some families. Published research article mentions LSA and LSA families.

1987

March, 1987
LSA produces slide show/videotape with donated assistance of Indianapolis media expert.

1987

Summer, 1987
LSA publishes most comprehensive guide ever written on the subject of Lowe’s syndrome, Living with Lowes Syndrome. Grant fr... Read more »
LSA publishes most comprehensive guide ever written on the subject of Lowe’s syndrome, Living with Lowes Syndrome. Grant from Willen Drug Co. Supports the project. Over 1500 copies are mailed out internationally.

1987

Fall, 1987
5th Parent Directory lists 61 families. Total membership is over 200. Total contributions for 1987: $9316. $5000 earmarked fo... Read more »
5th Parent Directory lists 61 families. Total membership is over 200. Total contributions for 1987: $9316. $5000 earmarked for medical research. Research grant guidelines developed and Request for Proposals sent out.

1988

January, 1988
NIH announces plans to begin long-term comprehensive clinical study of Lowe’s syndrome. LSA families asked to participate.

1988

June, 1988
2nd International Conference held in Oak Brook, Illinois, with 100 participants from 22 states, England, and Japan. Program f... Read more »
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. Lawrence Charnas. LSA awards 1st medical research grant for $5000 to support Dr. Richard Lewis’s project in gene research.

1989

Summer, 1989
Comprehensive survey questionnaires sent out. Committee begins to analyze results.

1989

October, 1989
Workshop on Behavior Problems in Lowe’s Syndrome held in Wilkes Barre, Pennsylvania, featuring presentations by physicians,... Read more »

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.

1990

January, 1990
Regional support network developed.

1990

March, 1990
Three LSA members attend National Conference on Peer Support Training in Washington, DC.

1990

September, 1990
Families affected by Lowe syndrome meet in Crewe, England, at the Parents Conference sponsored by the Research Trust for Meta... Read more »
Families affected by Lowe syndrome meet in Crewe, England, at the Parents Conference sponsored by the Research Trust for Metabolic Diseases in Children.

1990

November, 1990
Zel Dolinsky, Ph.D., presents results of behavior section from LSA Comprehensive Survey Project at the Behavioral Phenotypes ... Read more »
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.

1991

June, 1991
3rd International Conference on Lowe’s Syndrome held in Oak Brook, Illinois. 115 adults and 25 children with Lowe’s syndr... Read more »

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.

1992

March, 1992
Parent directory lists 108 families from 32 states and 3 other countries.

1992

July, 1992
Dr. Robert Nussbaum and Dr. Richard Lewis announce in Nature that they have isolated and identified the gene that causes Lowe... Read more »
Dr. Robert Nussbaum and Dr. Richard Lewis announce in Nature that they have isolated and identified the gene that causes Lowe syndrome.

1993

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

1994

Summer, 1994
Changes at NIH result in cancellation of the Lowe syndrome clinical research project. Dr. Lawrence Charnas leaves NIH. LSA aw... Read more »

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.

1995

Summer, 1995
Revised edition of booklet is published with grant from Allergan. Bookmark-style publication with "Question & Answers" about ... Read more »
Revised edition of booklet is published with grant from Allergan. Bookmark-style publication with "Question & Answers" about Lowe syndrome also published.

1995

December, 1995
Dr. Robert Nussbaum announces major discovery that the cause of Lowe syndrome is an enzyme deficiency.

1996

February, 1996
Parent membership lists 127 families from the U.S. and six other countries.

1996

June, 1996
5th International Conference held in Anaheim, California. Dr. Robert Nussbaum presented with Medical Research Award for disco... Read more »
5th International Conference held in Anaheim, California. Dr. Robert Nussbaum presented with Medical Research Award for discovery of enzyme deficiency.

1996

Fall, 1996
The Baylor College laboratory offers the world first-ever Lowe syndrome biochemical diagnostic test. LSA-Talk, an e-mail disc... Read more »
The Baylor College laboratory offers the world first-ever Lowe syndrome biochemical diagnostic test. LSA-Talk, an e-mail discussion list for LSA members, is established.

1997

Fall, 1997
LSA Web page established.

1998

June, 1998
6th International Conference held in Andover, Massachusetts. LSA membership includes 175 families.

1999

Summer, 1999
Biochemical prenatal test is made available.

1999

Fall, 1999
LSA awards three medical research grants to biomolecular and genetic researchers. Total amount awarded: $45,000. LSA joins th... Read more »

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.

2000

June, 2000
7th International Conference held in Atlanta, Georgia. 215 people participated, including 49 families with 42 boys with Lowe ... Read more »
7th International Conference held in Atlanta, Georgia. 215 people participated, including 49 families with 42 boys with Lowe syndrome. Jane Gallery elected third LSA president.

2001

March, 2001
First-ever scientific meeting on Lowe syndrome enzyme held at NIH. New newsletter published, “Going On: Living with the Los... Read more »
First-ever scientific meeting on Lowe syndrome enzyme held at NIH. New newsletter published, “Going On: Living with the Loss of a Loved One with Lowe Syndrome.”

2001

Fall, 2001
New brochure published to promote LSA medical research fund. Annual Parent Directory includes 209 families from the U.S. and ... Read more »

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.

2002

February, 2002
LSA awards two $30,000 grants to biomolecular researchers.

2002

June, 2002
8th International Conference held in Oak Brook, Illinois. 188 people participated from 25 different states and 4 different co... Read more »
8th International Conference held in Oak Brook, Illinois. 188 people participated from 25 different states and 4 different countries. The first ever LSA Friendship Quilt made by Fiona Fisher from Scotland using quilt squares made by LSA parents.

2002

Fall, 2002
Annual Parent Directory includes 219 families from the U.S. and 19 other countries. 2nd LSA Comprehensive Survey Project is p... Read more »
Annual Parent Directory includes 219 families from the U.S. and 19 other countries. 2nd LSA Comprehensive Survey Project is published.

2002

October, 2002
1st-ever clinical research workshop entitled “Lowe Syndrome: Clinical Challenges and Solutions” takes place at the NIH br... Read more »
1st-ever clinical research workshop entitled “Lowe Syndrome: Clinical Challenges and Solutions” takes place at the NIH bringing together distinguished physicians from all over the U.S. and several other countries.

2003

Summer, 2003
Mary Tietz elected fourth President of the LSA. The Medical & Scientific Advisory Board (MSAB), and Board of Directors, took ... Read more »
Mary Tietz elected fourth President of the LSA. The Medical & Scientific Advisory Board (MSAB), and Board of Directors, took exploratory steps toward the establishment of a clinical database project.

2003

Fall, 2003
Annual Parent Directory includes 218 families from the U.S. and 19 other countries. LSA awards $25,000 grant to Utah molecula... Read more »
Annual Parent Directory includes 218 families from the U.S. and 19 other countries. LSA awards $25,000 grant to Utah molecular biologists.

2003

2003
LSA families participate in first phase of a behavioral study “The Cross System Research Program” conducted by the Univer... Read more »
LSA families participate in first phase of a behavioral study “The Cross System Research Program” conducted by the University of Birmingham, United Kingdom.

2004

Summer, 2004
9th International Conference held in Minneapolis. Minnesota. 152 people participated from 23 different states and 4 different... Read more »
9th International Conference held in Minneapolis. Minnesota. 152 people participated from 23 different states and 4 different countries. 31 boys and young men with Lowe syndrome attended with their families.

2004

August, 2004
Historic “Changing of the Guard” takes place after 20 years. LSA address changes and headquarters move to Texas while the... Read more »

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.

2004

2004
LSA receives donation of first ever LSA color promotional brochure from Goodway Technologies Corp. NIH researchers report sta... Read more »
LSA receives donation of first ever LSA color promotional brochure from Goodway Technologies Corp. NIH researchers report startling discovery that several confirmed cases of Lowe syndrome occurred in individuals who did not have cataracts.

2005

Fall, 2005
Annual Family Directory includes 240 families from the U.S. and 26 other countries

2005

2005
LSA awards first ever International grant of $25,000 to researcher in Italy. LSA families participate in 2 nd phase of a beha... Read more »
LSA awards first ever International grant of $25,000 to researcher in Italy. LSA families participate in 2 nd phase of a behavioral study “The Cross System Research Program” conducted by the University of Birmingham, United Kingdom.

2006

Summer, 2006
10th International Conference on Lowe Syndrome held in San Diego, California. 174 people participated from 32 different state... Read more »

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.

2006

Fall, 2006
Annual Family Directory includes 246 families from the U.S. and 27 other countries.

2006

October, 2006
Awareness bracelet designed exclusively for LSA fundraising.

2007

February, 2007
Historic LSA Clinical Database exploration meeting at Mayo Clinic, Rochester, MN. Read more »

Historic LSA Clinical Database exploration meeting at Mayo Clinic, Rochester, MN.

2007

Summer, 2007
After 24 years of dedication, LSA Founder, Kaye McSpadden, completes her last board term and is awarded Honorary board member... Read more »
After 24 years of dedication, LSA Founder, Kaye McSpadden, completes her last board term and is awarded Honorary board member status.

2007

Fall, 2007
Ann Keefer, LSA Treasurer resigns after serving 5 years. Jane Gallery appointed by the Board of Directors to continue Treasur... Read more »

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.

2008

February, 2008
LSA Board of Directors appoints, Christine Knight Director, Medical and Scientific Advisory Board. Read more »

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.

2008

Spring, 2008
LSA awards $24,000 grant to CT researcher for 2008 Comprehensive Survey on Lowe Syndrome. Phase I: Development and Design ... Read more »

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.

2008

Summer, 2008
LSA celebrates 25 years! 11th International Conference on Lowe Syndrome held in Orlando, Florida. 196 people representing 60 ... Read more »

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.

2008

Fall, 2008
AISLO volunteers begin Italian translation of 2008 Comprehensive Survey on Lowe Syndrome to enable their family members to pa... Read more »

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.

2008

November, 2008
Invitations to participate in the online 2008 Comprehensive Survey of Lowe Syndrome went out to 175 participates. Read more »

Invitations to participate in the online 2008 Comprehensive Survey of Lowe Syndrome went out to 175 participates.

2009

January, 2009
The 2008 Comprehensive Survey of Lowe Syndrome data entry portion of the on-line survey closed on January 31st with 137 (78.3... Read more »

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.

2009

February, 2009
LSA awards $25,000 grant to CT researcher to conduct Phase II of the 2008 Comprehensive Survey on Lowe Syndrome – Analysis ... Read more »

LSA awards $25,000 grant to CT researcher to conduct Phase II of the 2008 Comprehensive Survey on Lowe Syndrome – Analysis and Report

2009

June, 2009
LSA awards $5000 grant to GeneDx, MD for use in Molecular Testing for OCRL. Read more »

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.

2009

July, 2009
The analysis of the 2008 Comprehensive Survey of Lowe Syndrome is complete.

2009

August, 2009
The written portion of the 2008 Comprehensive Survey.

2009

September, 2009
Extensive revision to the 3rd edition of the Living with Lowe Syndrome, A Guide for Families andProfessionals book begins.

2009

December, 2009
LSA co-sponsors the 49th American Society of Cell Biology (ASCB) in San Diego, a satellite meeting at, to present recent find... Read more »

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.

2010

March, 2010
The report on the 2008 Comprehensive Survey of Lowe Syndrome is published.

2010

Spring, 2010
LSA awards a $25,000 grant to Brandeis University, MA researcher.

2010

Summer, 2010
The 4th edition of The Living with Lowe Syndrome, A Guide for Family and Professionals is complete and tripled in size from i... Read more »

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

2010

Fall, 2010
LSA enters into five year licensing agreements with Lowe syndrome organizations from Italy, AISLO, France, ASI and the United... Read more »

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.

2011

Summer, 2011
LSA celebrates the 1st anniversary of the 4th edition of the Living with Lowe Syndrome, A Guide for families and Professional... Read more »

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.

2011

Fall, 2011
LSA awards a $25,000 grant to Yale University, CT researcher.

2011

Winter, 2011
LSA partners with Rare Kidney Stone Consortium disease registry based at Mayo Clinic, MN.

2012

January, 2012
LSA awards $25,000 second year grant to Brandeis University, MA researcher.

2012

Spring, 2012
LSA partners with Coordination of Rare Diseases at Sanford (CoRDS) registry program at Sanford University, Sioux Falls, SD.

MEDICAL RESEARCH

In 1986, the LSA gave its first Medical Research Award to Drs. Richard A. Lewis and Robert L. Nussbaum in celebration of their success in the regional mapping of the Lowe’s syndrome gene on the X-chromosome. Since its initial days in 1983, the LSA has supported medical research and sought to cultivate mutually supportive relationships between members of the m... Read more »

OUR OWN RESEARCH

In 1986, the LSA took a new and bold direction and decided to step into the research arena in a new way. At the 1986 conference parents had many questions: When will my son begin to speak? When will he walk? Will he walk? If he develops glaucoma at what age will it happen? What is the life expectancy of our boys? Will they read, be able to learn? What happens as th... Read more »

THE FRUITS OF OUR LABORS

For such a small organization, we’ve accomplished a lot. See our milestones for some examples of what we’ve done. We do a lot with a little. We operate across a vast geography as volunteers. The Board of Directors consists of ten members: each one is the parent of a child with Lowe syndrome. Sometimes we amaze ourselves at wha... Read more »

THE FUTURE

While we've accomplished a lot, we have much more to do, especially as we begin to hear from families, physicians and scientists from all over the world. We need to translate our materials into many different languages. We need to help more families to attend the conferences. We need to support research at higher levels. To accomplish our future goals, we ne... Read more »

LSA Conferences

About LSA Conferences

Approximately every two years, the Lowe Syndrome Association holds an international conference where family, friends, medical and other professionals gather to exchange ideas and information. The conferences are a terrific source of information specific to Lowe Syndrome and parents also get a chance to talk with other LS parents, face to face.
These conferences are generally "hosted" by a family in a particular region of the country, with the LSA Board Of Directors usually deciding on the next conference location at the beginning of each conference. See our past conferences on the timeline below.

UPCOMING CONFERENCE

15TH INTERNATIONAL CONFERENCE ON LOWE SYNDROME

Please join us June 30-July 2, 2017 in Chicago, Illinois.  The 2017 conference will be held at the Chicago Marriott O’Hare, which is located only a few minutes from the Chicago O’Hare airport.

For more information on the hotel, amenities, location, etc. please visit the following Marriott website at:

 

To make a reservation for the 2017 conference, you can use the special link below.

LSA Biennial Conference Rate:

Rate: $129.00 USD per night
Start date: June 27, 2017 (first available date of the discounted rate)
End date: July 5, 2017 (last available date of the discounted rate)
Last day to book: June 6, 2017

Past LSA Conferences

1986

JUNE 20TH – 22ND INDIANAPOLIS, INDIANA
1st International Conference on Lowe Syndrome. Number of participants: 75. Number of affected boys a
JUNE 20TH – 22ND INDIANAPOLIS, INDIANA

1988

JUNE 17TH – 19TH OAK BROOK, ILLINOIS
2nd International Conference on Lowe Syndrome. Number of participants: 100+. Number of affected boys Read more »
JUNE 17TH – 19TH OAK BROOK, ILLINOIS

2nd International Conference on Lowe Syndrome
Number of participants: 100+
Number of affected boys attending: 23

Program Schedule Highlights

 

Friday

Welcoming Remarks
Patty Steinman, LSA Vice President; Kaye McSpadden, LSA President

Parent Panel
Mickey Martin, Moderator

 

Saturday

Kidney Involvement in Lowe’s Syndrome
Peter R. Lewy, M.D., Wilmette, Illinois

Orthopedic Manifestations of Lowe’s Syndrome
Vicki Kalen, M.D., Assistant Professor of Orthopedics University of Florida, Gainesville, Florida

Biochemical Research Findings
Ikuo Yamashina, Ph.D., Faculty of Pharmaceutical Science
Kyoto University, Japan

Biochemical Studies on Lowe’s Syndrome
Fred J. Kieras, Ph.D., Institute for Basic Research in Developmental Disabilities
New York, NY

Nervous System Involvement in Lowe’s Syndrome
Lawrence Charnas, M.D., Medical Staff Fellow, Human Genetics Branch, National Institute of Child Health and Human Development

Ocular Findings in Lowe’s Syndrome
Gerhard W. Cibis, M.D., Director, Clinical Ophthalmology Services, Children’s Mercy Hospital, Kansas City, Missouri

The Genetics of Lowe’s Syndrome and Further Refinements in Mapping the Gene for Lowe’s Syndrome
Richard A. Lewis, M.D., Depts. of Ophthalmology, Pediatrics, Medicine, and The Institute for Molecular Genetics, Baylor College of Medicine, Houston, Texas

Advances in Pre-Conception Gender Determination Techniques
Yury Verlinsky, Ph.D., Section of Reproductive and Medical Genetics, Illinois Masomc Medical Center
Chicago, Illinois

 

Sunday

Breakfast/Father’s Day Tribute
Terry Miller

Education of Children with Visual Impairments
Myron T. Dagley, Executive Director, Joan Allison, Program Coordinator, DuPage/West Cook Regional Special
Education Association, Chicago, Illinois

Closing Session
Showing of LSA film: Care Today … Cure Tomorrow

Views from the Twilight Zone
Kaye McSpadden, LSA President

1988

JUNE 26TH – 28TH ANDOVER, MASSACHUSETTS
6th International Conference on Lowe Syndrome. Read more »
JUNE 26TH – 28TH ANDOVER, MASSACHUSETTS

6th International Conference on Lowe Syndrome

Program Schedule Highlights

Friday

Opening Session
Welcome, Introductions, LSA Media Show, Parent Panel

Saturday

Breakfast What We Know (and Don’t Know) about the Cause of Lowe Syndrome
Robert L. Nussbaum, M.D., Chief Laboratory of Genetic Disease Research, National Institutes of Health, Bethesda, Maryland

Family Planning Options for Families Affected by Lowe Syndrome
Robert L. Nussbaum, M.D., Chief Laboratory of Genetic Disease Research, National Institutes of Health, Bethesda, Maryland
Richard A. Lewis, M.D., Cullen Eye Institute, Baylor College of Medicine, Houston, Texas

Neurological Problems in Lowe Syndrome: Seizures, Behavior, and Other Problems
Lawrence Charnas, M.D, Chief Resident, Division of Pediatric Neurology, University of Minnesota, and Adjunct Scientist, Human Disease Branch, NICHD National Institutes of Health

Kidney Problems in Lowe Syndrome
Youichi Mizusawa, M.D., Pediatric Nephrologist, Tokyo Medical & Dental University, Japan

Q&A Session on Kidney and Metabolic Problems
Youichi Mizusawa, M.D., Pediatric Nephrologist, Tokyo Medical & Dental University, Japan
Rebecca S. Wappner, M.D., Metabolic Geneticist, Riley Children’s Hospital, Indianapolis, Indiana

Keloids, Glaucoma and Other Eye Problems in Lowe Syndrome
Richard A. Lewis, M.D., Cullen Eye Institute, Baylor College of Medicine, Houston, Texas

Buffet and Carnival with Games and Music
Musical Entertainment by “Johnny the K”

Sunday

Dental Care in Lowe Syndrome
David A. Tesini, D.M.D., M.S., Tufts University School of Dental Medicine, Medford, Massachusetts, Past President, Academy of Dentistry for Persons with Disabilities

Story Boxes: A Multi-Sensory Approach
Nancy Muldrew, M.Ed., and Norma Drissel, M.Ed., Perkins School for the Blind, Watertown, Massachusetts.

1989

WORKSHOP ON BEHAVIOR PROBLEMS IN LOWE SYNDROME OCTOBER 21ST WILKES BARRE, PENNSYLVANIA
A one day workshop, with approximately 50 participants. Read more »
WORKSHOP ON BEHAVIOR PROBLEMS IN LOWE SYNDROME OCTOBER 21ST WILKES BARRE, PENNSYLVANIA

Number of participants: ~50
Program Schedule Highlights

Saturday

Principles of Behavior Modification
Joseph Fedor, MA., and Bill Campoli, M.A.
NY State Office of Mental Retardation and Developmental Disabilities, Broome Developmental Center, Binghamton, NY

Dealing with Behavior Problems: Parents and Schools Working Together
Carol Czaja, M.A., EB.S., Tufts University, Medford, MA

The Biological Basis of Behavior Problems
Susan Hyman, M.D., John F. Kennedy Institute, Baltimore, MD

Psycho-pharmaceutical Behavior Management
Alan Reiss, M.D., John F. Kennedy Institute, Baltimore, MD

The Behavior Effects of Anticonvulsants
Lawrence Charnas, M.D., Ph.D., Human Genetics Branch, National Institute of Child Health and Human Development National Institutes of Health

Living, loving, and laughing: how families cope
An informal discussion

1991

JUNE 21ST – 23RD OAK BROOK, ILLINOIS
3rd International Conference on Lowe Syndrome. Number of participants: 115. Number of affected boys Read more »
JUNE 21ST – 23RD OAK BROOK, ILLINOIS

3rd International Conference on Lowe Syndrome
Number of participants: 115
Number of affected boys attending: 25

Program Schedule Highlights

Friday

Opening Remarks
Kaye McSpadden, LSA President; Judy Dinofrio, LSA Incoming President

Introduction to Small Groups and Small Group Meeting

Saturday

New Finding in the Genetic Mapping of Lowe’s Syndrome
Richard A. Lewis, M.D., Departments of Ophthalmology, Pediatrics & Medicine, Baylor College of Medicine, Houston, TX

Robert L. Nussbaum, M.D., Department of Human Resources
University of Pennsylvania, Philadelphia, PA

Medical Management of Lowe’s Syndrome
Rebecca Wappner, M.D., Department of Pediatric Metabolism & Genetics, Riley Hospital for Children, Indianapolis, IN

Medical, Intellectual & Behavioral Assessment of Lowe’s Syndrome
Lawrence Charnas, M.D., Ph.D., Dept. of Health & Human Services, NICHD, Bethesda, MD (Unit of Neurogenetics)
Lauren Kenworthy, MA., Dept. of Health & Human Services, NICHD, Bethesda, MD (Research Assistant)

Management of Glaucoma in Lowe’s Syndrome
Gerhard W. Cibis, M.D., Director, Clinical Ophthalmology Services, Children’s Mercy Hospitals, Kansas City, MO

Opening Doors – The Power of Laughter and Play
Peter Alsop, Ph.D., Educational Psychologist. Nationally known singer, songwriter, poet, dramatist and actor. Topanga, CA

Sunday

LSA Study Report
Kaye McSpadden, LSA President
Zelig Dolinsky, Ph.D., Research Consultant, Andover Connecticut

1993

JUNE 25TH – 27TH DOWNERS GROVE, ILLINOIS
4th International Conference on Lowe Syndrome. Read more »
JUNE 25TH – 27TH DOWNERS GROVE, ILLINOIS

4th International Conference on Lowe Syndrome

Program Schedule Highlights

Friday

Welcoming Remarks
Mickey Martin, Conference Chair; Judy Dinofrio, LSA President

Parent Panel
Michelle Ankrom, Buz Craven, Patrick Dinofrio, Candy Smith

Saturday

Discovery of Lowe’s Gene Highlights
Testing for Lowe’s Family Planning Options
Richard A. Lewis, M.D., Departments of Ophthalmology, Pediatrics & Medicine, Bay]or College of Medicine Houston, Texas
Robert L. Nussbaum, M.D. Department of Human Resources, University of Pennsylvania Philadelphia, Pennsylvania

Lowe’s Treatment Profile NIH Behavioral Study Summary of Findings
Lawrence Charnas, M.D., PhD., Department of Health and Human Services, Neurogenetics, NICHD Bethesda, Maryland

Inclusion or Exclusion: Right to Education
Al Smith, Consulting Senior, Illinois State Board of Education

Medical Management of Lowe’s Syndrome
Rebecca Wappner, M.D., Department of Pediatric Metabolism and Genetics, Riley Hospital for Children Indianapolis, Indiana

Social Time, Relaxation Dinner and Dancing
Lowe’s Rock and Roll

Sunday

Small Groups
Physicians Panel

1996

JUNE 28TH – 30TH ANAHEIM, CALIFORNIA
The 5th International Conference on Lowe Syndrome, which was held in June, 1996, in Anaheim, Califor Read more »
JUNE 28TH – 30TH ANAHEIM, CALIFORNIA

5th International Conference on Lowe Syndrome

How far we’ve come!

by Jane Gallery, 1996 Conference Chair and LSA Vice President

The 5th International Conference on Lowe Syndrome, which was held in June, 1996, in Anaheim, California, provided an occasion to consider how far we’ve come as an organization in the ten years since our first conference in 1986.

Advances in medical science and in our own understandings have been the highlights of that decade. We now know what the genetic deficiency is that causes Lowe syndrome and where that deficiency occurs in the cell, thanks to the efforts of Dr. Nussbaum and his research team. From Dr. Lewis we’ve learned about all the problems associated with the visual impairment in Lowe syndrome as well as carrier detection through eye examinations.

Dr. Wappner organized information relating to the medical management of Lowe syndrome to ensure proper care and required medications so parents can advise their home doctors. Dr. Charnas brought us to the NIH, with the pokings, probings and tests that provided a comprehensive understanding of all the health issues in Lowe syndrome. He also validated and described the behavior disorder known to families, broadened the NIH research to include behavior, and tested medications to modify behavior and control seizures.

Kaye McSpadden orchestrated, organized and optimized the LSA every step of the way. She encouraged us to get our eyes examined, to go to NIH, to give cell samples, to try the behavior medications. She raised the behavior issues continually, planned a regional conference on behavior, and with the help of Kathy Schroerlucke and Zel Dolinsky conducted a Comprehensive Survey of Behaviors in Lowe syndrome. She kept in touch with the doctors, managed the LSA medical research grant program, reported in the newsletter all the latest findings and helped bring us all together at conferences to learn, share and go forward with new enthusiasm.

The families brought their children to the conferences; for many it was the first time they had seen another boy with Lowe syndrome. They talked, shared experiences and compared notes – and they kept coming back, from as far away as England.

1996 celebrates ten years of conferences, ten years of learning from the experts and from each other.

Conference Summary

Friday evening’s program opened with a flashback by Kaye McSpadden to the first LSA Conference ten years ago. Her slides and humor-laden commentary set an upbeat tone for the conference and laid the groundwork to reflect on how far we’ve come. Following her presentation, a parent panel made up of Jackie F., Julie and David O., Sharon and Jeff S., and Rick S. addressed topics and generated comments on issues as diverse as medications, surgeries, schools, vacations and sibling relations.

Saturday’s program featured several presentations by physicians. The doctors who have brought us so much understanding and hope in dealing with all the medical implications of Lowe syndrome presented information, answered our endless questions and offered advice, not only during the formal sessions but throughout the weekend.

Dr. Nussbaum’s presentation of the “Discovery of the Enzyme Deficiency in Lowe Syndrome” provided fascinating new information on what causes this complex disorder. His discovery that the Lowe syndrome enzyme deficiency is in the golgi apparatus (a certain part of the cell) is a scientific breakthrough in cellular research. Sharon Suchy, Ph.D., a member of Dr. Nussbaum’s research team, was also in attendance. They reaffirmed their commitment to learning as much as they can about what causes Lowe syndrome. Kaye McSpadden and Candy Smith awarded Dr. Nussbaum the LSA Medical Research Award at the conclusion of his presentation.

Dr. Charnas brought us up to date on the “Neurological Bases of Behavior Disorders and Seizures” and discussed the success being achieved with various medications for modifying behavior. Dr. Lewis gave a presentation with Dr. Nussbaum on carrier detection and family planning. Dr. Wappner discussed the medical management of Lowe syndrome and provided a printed comprehensive explanation of the health issues requiring attention. Dr. Charnas advised us on how to get the best care and advice from our doctors.

To wrap up the jam-packed Saturday program, this group of experts participated in a panel that fielded questions on every aspect of the disorder. Once again it was abundantly evident how fortunate the LSA is to have such a dedicated, knowledgeable, caring and understanding group of doctors committed to helping us learn about Lowe syndrome.

The conference program also featured presentations from social and psychological experts on family stress and behavior problems. Although his time was limited, Donny Valliere provided us with a lot of information on recognizing and coping with the stress associated with having Lowe syndrome in the family. He left us with a checklist of the sources and manifestations of stress and the advice that we must be aware and communicative.

Jason Smith used his combined expertise in behavior management and direct experience with an affected young man, Fritz (who missed his first conference because he was having a better time at home) to lay out a program for analyzing the function of problem behaviors in Lowe syndrome. He showed us how to deal with the causes as well as the manifestations of inappropriate behaviors and told the story of Fritz’s success.

When Saturday evening rolled around we found ourselves outside under a beautiful California sky, enjoying an outdoor buffet, lively music, and a “celebrity” guest appearance. That world famous movie star, Mickey Mouse himself, showed up and provided endless hugs, smiles and photo opportunities. He graciously stayed till everyone had a chance to meet him personally and the last picture was taken. Dave Kinnoin performed his Disney hits and energized the crowd to sing along and participate in the performance. He was so successful that our very own William stepped up to the microphone and carried on his own show. Dave generously donated his time, handed out tapes and videos and built a place in our hearts and memories.

Candy Smith closed the conference by presenting each of the families with a “Parent Advocate’s Tool Kit” containing various items and a list of helpful words of advice for coping as parents of a special needs children.

Special recognition for special people

Candy Smith had the inspiration and the courage to hold a conference in California. Her unflagging attention to every detail in planning and running the event brought the dream to a wonderful reality. She showed us that we can hold a conference anywhere – and announced that our next one would be in Boston in 1998.

Pam H. organized and managed the childcare operation which ran beautifully, with the help of a small army of local workers as well as the help of some of the older siblings attending the conference. Jane Gallery planned the program, working out numerous presentation details with the speakers. Kathy Schroerlucke organized, designed and produced all the printed conference materials. Kaye McSpadden provided guidance, leadership and advice every step of the way. Patty S. provided the wisdom of her experience in coordinating the facilities operation.

Trenton K. was our official photographer. Nadine and Sally M. staffed the registration table.

Three families traveled all the way from England and Youichi Mizusawa, M.D., a nephrologist, came all the way from Japan. We recognize all the families, friends and professionals who came to learn, teach and share, continuing the tradition of LSA conferences.

During the last morning of the conference a few participants (adults & children) took time to write messages for the newsletter. Here they are!

“This weekend at the conference was very special to me, mostly because of the kids. I enjoyed talking to all the parents, but especially the kids. It was fantastic to see the boys having lots of fun with Dave Kinnoin, the entertainer. I can’t wait to go to our next conference to see all the families again. Until then…God bless all our families. I can’t wait to see you at our next conference.”

“We had a wonderful time at the conference. Friendships were renewed and new friendships were made that we hold dear. All the doctors are terrific and we want to say thank you, keep up the superior work. Information we learned will help us help our son to become the best he can be. Thanks to all who worked hard to make this possible. See you in Boston!”

“I enjoyed renewing old acquaintances and meeting new friends as well as discussing the progress of our sons and hearing the latest research.”

“New aspects of psychology, counseling, and gene information were very welcome and informative. Also, the interaction with other participants and the location (as far as the city and its surrounding areas and offerings) were grand.”

“We have had a great time too. We have found out so much from the speakers, the families and the children themselves. We are going home with fresh targets and strategies! Thanks to everyone. See you again soon.”

“I liked the playroom! I did some painting. I also liked Dave Kinoin.”

“I loved the childcare, the singer and Mickey Mouse. The singer was a star and so was I. Thank you.”

“We had a great time! We learned so much and I am more reassured and comforted knowing we aren’t the only Lowe syndrome family, though in New Mexico it feels that way sometimes. Watch out those of you who have e-mail! I love e-mail and will want to keep in touch. We are new to Lowe’s (our son is 13 months old and was just diagnosed three months ago), so I may have the urge to talk with someone who understands. Our son enjoyed the childcare and the hands made with paint are precious to us. Thank you for everything!”

“We enjoyed seeing everyone again! It is also encouraging for us to see the parents of the older children – they have given us great advice! It was fun to see some interaction between our boys. “

On The Beam, Fall, 1996 (15:3), Special Conference Edition

2000

JUNE 23RD – 25TH ATLANTA, GEORGIA
7th International Conference on Lowe Syndrome. Read more »
JUNE 23RD – 25TH ATLANTA, GEORGIA

7th International Conference on Lowe Syndrome

Bespecktacled little boys were frequently sighted riding up and down the glass elevators at an Atlanta hotel during a June weekend last summer. Many hotel-goers were amused and entertained by our boys during the 7th International Conference on Lowe Syndrome, which was held June 23-25, 2000 at the Renaissance Waverly Hotel in Atlanta, Georgia. Having brought together about 215 parents, children, friends, relatives, and professionals, it was the biggest conference in LSA history. It was an exciting and busy weekend, and by all accounts, a tremendous success.

Some numbers
An unprecedented number of LSA families participated — 49, most of whom brought their children with them. 42 boys and young men with Lowe syndrome attended, along with many of their siblings. Many friends and relatives were also there, including 15 grandparents! About 17 professionals joined us for all or part of the weekend, representing the fields of science, medicine, education, and others.

Unquestionably, this conference was the most diverse, geographically. Those from the United States came from 29 different states. Eight other countries were also represented, including Canada, England, France, Germany, Ireland, Japan, Republic of Singapore, and Scotland. During the opening session, one family from the Republic of Singapore were given a gift in recognition of having traveled the longest distance to attend the conference. In keeping with a tradition begun at the previous conference, Kaye McSpadden gave a brief message of welcome in five different languages (English, French, German, Japanese, and Mandarin).

Trips to Stone Mountain
For the first time ever, optional add-on activities were available for conference-goers who arrived a day early or stayed a day later. On the Thursday night before the conference, participants had the opportunity to board a chartered bus and travel to Stone Mountain Park for an evening of fun, including a ride on the historic train and watching the late-night outdoor laser show. Since this was the first time we’d ever done anything like this, we really had no idea how many people would participate. We were thrilled at the large number — about 60! A great time was had by all. Not only did we have fun, but it was a wonderful way to get to know each other in a more relaxed and social setting than is sometimes possible during the program-packed conference weekend itself. Many thanks go to local Atlanta-area LSA members for chartering the bus, buying the tickets, and bringing blankets to put on the ground during the laser show. What a wonderful and special night it was!

A similar outing took place on Sunday afternoon after the conference. A somewhat smaller group traveled to Stone Mountain to enjoy its many daytime activities.

The Opening Session
The conference got off to a powerful start with the premiere and large-screen showing of the new LSA film, “Reel to Real Boys.” The film was created by Kim Schroerlucke, using video clips that had been donated by many LSA families. The audience was thrilled at the film and everyone was very appreciative of Kim for her wonderful effort. (Note: This film is now available for purchase, along with the previous LSA film, “Let’s Hear It for Our Boys,” on a single videotape.)

LSA Board member Kathy Schroerlucke then masterfully opened the session with words of welcome and introductions. She gave special recognition to many participants, including those who had given financial contributions. Others were recognized as well; for instance, those who were there for the first time were asked to stand up. A touching moment came when Kathy read a list of names of boys who had died since the last conference, as well as those who had been born, leaving many in the audience visibly moved.

Jane Gallery, the newly-elected LSA President, gave a moving tribute to Candy Smith, the previous LSA President who had served two terms (see On the Beam, v.19:2, Summer 2000). Jane also introduced members of the LSA Board of Directors.

The Opening Session concluded with a Parent Panel, with moderator Buz Craven. Panel participants spoke on a variety of topics relating to the day-to-day challenges of having children with Lowe syndrome, at different life stages. Fiona Fisher of Scotland, parent of a 5-year-old, spoke on “The Highs of Lowe’s.” Ted Barrow of Utah, who has a 17-year-old, spoke on “Lowe & Behold: The Teenage Years.” Mickey Martin, one of the original founders of the LSA and parent of 34-year-old Dan, spoke on “Who Turned Out the Lights?”

The Program — Formal and Informal
The formal program, which began late Friday night with a session about Lekotek, continued throughout the weekend to offer many presentations on a variety of helpful and interesting subjects, including the latest in research, medical care, and others. More concurrent sessions were offered than ever before, giving conference-goers the option of choosing those sessions which were more relevant to their lives and interests.

In addition, for the first time, several informal discussion opportunities were offered. On Saturday evening, after the completion of the dinner party, rooms had been set aside for three informal discussion groups: “Kith and Kin” (for grandparents and other relatives), “For Fathers Only,” and “Adulthood in Lowe Syndrome” (for parents of boys who are in their late teens, 20s and 30s). Participants in these groups reported later that they had enjoyed them tremendously and would like to see more opportunities like these at future conferences. Many thanks to Carol Kuhtz for being the facilitator of the “Adulthood” group, to Rod Ankrom for helping with the “Fathers” group, and to everybody in the “Kith & Kin” group for taking care of themselves.

Meals and breaks
As has always been the case at our conferences, we made good use of our meal times and break times to socialize and get to know each other. By and large, the food and service was excellent, and the surroundings were comfortable. The Reception and Registration at the very beginning of the conference was especially exciting as many people were meeting each other for the first time, and others who had met at previous conferences renewed old friendships. The presence of a large bulletin board for photographs, messages, and notices was a helpful addition to the registration area and a focal point for many conversations. However, making sure everyone got properly registered and given the appropriate conference materials and nametags was a challenge!

Sibling Workshop
One new and exciting feature of this conference was a special event planned just for siblings. About 14 children ages 7-14 participated in the 4-hour long “Sibshop” on Saturday. Led by Stacey Reicher, LCSW, and Jackie Haar, LCSW, from the Marcus Institute of Emory University, the Sibshop provided a unique opportunity for brothers and sisters of boys with Lowe syndrome to discuss their shared concerns, interests, and joys in a fun and relaxed, recreational atmosphere. The program included planned activities, games, discussion and a group lunch.

Childcare Program
The childcare program was ably organized by Atlanta parent Marie Clark with the assistance of other local families. About two dozen childcare workers were recruited, including some paid childcare professionals from the local area, college students, and volunteers, some of whom were older siblings, friends, and relatives of conference participants. Jeff and Marie Clark, along with Tina and David Ervin and others, arranged for the delivery of supplies and three rooms full of toys and other play equipment. Childcare was made available during all the formal sessions, and parents felt assured their children were in safe and capable hands during this time. And, (most of the time) lots of fun was had as well! Many thanks to Marie and everyone who worked so hard to assure a high-quality childcare program during the weekend.

Saturday night social
After a long day of presentations and discussions on serious and challenging topics, conference goers were ready to relax and have fun on Saturday evening. When we entered the banquet hall that evening, we were greeted to a sumptuous buffet table heavily laden with fun, barbeque style food such as hamburgers and hot dogs. A popcorn machine stood in one corner, and an ice cream sundae bar was nearby. In another corner, volunteers from the local Starlight Foundation sat at a table, equipped with paint and paintbrushes and ready to decorate anyone’s face who was willing to sit still for two minutes.

The performance stage was decked out with festive, colorful balloons, and after everyone had filled their plates, the room was filled with music! We were treated to a concert by Daddy-A-Go-Go, a musical duo of two dads (plus one son) who shared a program of original family and children’s songs done in a rock-music style. With the use of an electric guitar and drums, the singers had many children and adults rockin’ and rollin’ and tapping their feet! Although the music was too loud for some of the little ones, most enjoyed the concert tremendously.

If the food, the popcorn, the ice cream, the face-painting, and the music wasn’t enough to lift spirits, however, we had yet one more treat — a visit from Bugs Bunny and Daffy Duck! The life-size, costumed characters joined the fun, visiting with the kids, dancing, and allowing their photos to be taken. Compliments of the local 6 Flags Over Georgia amusement park, the special visit may have been the highlight of the weekend for many of our young conference participants.

Special thanks go to Lisa Smyrl and others at the Starlight Foundation for supporting and helping to plan this special event. With their support, we were not only able to enjoy the live concert by Daddy-A-Go-Go, but each family was also treated to a free CD! We also appreciate their volunteer face-painters and their help with arranging the visit by Bugs and Daffy.

(Note: If you’re interested in learning more about Daddy-A-Go-Go or would like to order their CDs, you can visit their web site at: www.daddyagogo.com, or contact the LSA for an order form.)

Closing session
All good things must come to an end, and after such a jam-packed, exciting, and emotional weekend, what can you say? Our closing session was fairly simple. First, we said “thank you” to all those who had made the weekend possible. And there were many to recognize, especially Jeff and Marie Clark, the Atlanta couple who had worked so hard on the local arrangements, and Tina and David Ervin, also of the Atlanta area, who had helped. Others who had made major contributions to the weekend were Kim Schroerlucke, conference photographer, Kathy Schroerlucke, who prepared nametags and other materials, and Kaye McSpadden, program coordinator.

Second, we said “good-bye.” This was not easy to do. Hard to put in words and hard to say the words. So, we did as LSA parent Fiona Fisher had suggested — we sang it. Fiona led us in a moving rendition of “Auld Lang Syne,” in her native Scottish language. A happy and sad song all at the same time, and a fitting way to end the conference. Thank you, Fiona. Till we meet again.

On the Beam, Fall 2000, v.19:3.

2002

JUNE 28TH – 30TH OAK BROOK, ILLINOIS
For the eighth time in its history, the LSA brought together families, friends, and professionals in Read more »
JUNE 28TH – 30TH OAK BROOK, ILLINOIS

8th International Conference on Lowe Syndrome

For the eighth time in its history, the LSA brought together families, friends, and professionals in a celebration of friendship and hope. Gathered in the spacious facility of the Oak Brook Hills Hotel and surrounded by beautiful rolling hills and ponds, LSA members joined together for meals, social activities, and formal presentation by doctors and other professionals. Approximately 188 people attended, having come from 25 different states and four different countries. Thirty-seven boys and young men with Lowe syndrome were present, and their bubbly enthusiasm and affectionate hugs added just the right touch for a very special weekend.

For the entire report on the conference, see the “Report On The 8th International Conference on Lowe Syndrome” in the Fall 2002 issue of “On the Beam“.

On the Beam, Fall 2002, v.21:3.

2004

JUNE 25TH – 27TH MINNEAPOLIS, MINNESOTA
The 9th International Conference on Lowe Syndrome was held at the Sheraton Bloomington Hotel in Minn Read more »
JUNE 25TH – 27TH MINNEAPOLIS, MINNESOTA

9th International Conference on Lowe Syndrome

The 9th International Conference on Lowe Syndrome was held at the Sheraton Bloomington Hotel in Minneapolis, Minnesota. In attendance were families, friends, and professionals from 23 different states and a number of different countries. In all, we had 31 boys and young men with Lowe Syndrome at the conference.

For the entire report on the conference, see the “9th LSA Conference a big success in Minnesota ” in the Summer 2004 issue of “On the Beam“.

On the Beam, Summer 2004, v.23:2.

2006

JUNE 23RD – 25TH SAN DIEGO, CALIFORNIA
The 10th International Conference on Lowe Syndrome was held in San Diego, California from June 23rd Read more »
JUNE 23RD – 25TH SAN DIEGO, CALIFORNIA

10th International Conference on Lowe Syndrome

The 10th International Conference on Lowe Syndrome was held in San Diego, California from June 23rd to 25th, 2006, at the Doubletree Hotel . In attendance  were 174 families, friends, and professionals from over 22 different states and four different countries.  In all, we had 35 boys and young men with Lowe Syndrome at the conference.

The program featured many distinguished speakers who presented information and research news and updates. Social activities included a group trip to Sea Port, an outdoor dinner party, concert and dance for all ages, along with a trip to the zoo. The long hoped for conference scholarship fund assisted eight families who attended their first ever LSA conference.

For the entire report on the conference, see the “10th International Conference on Lowe Syndrome –  A Gathering of Families, Friends, and Professionals Sharing and Learning Together”  in the Fall 2006 issue of “On the Beam“.

On the Beam, Fall 2006, v.25:3

2008

JUNE 27TH – 29TH ORLANDO, FLORIDA
The 11th International Conference on Lowe Syndrome was held June 27 - 29, 2008 in Orlando, Florida. Read more »
JUNE 27TH – 29TH ORLANDO, FLORIDA

11th International Conference on Lowe Syndrome

The 11th International Conference on Lowe Syndrome was held June 27 – 29, 2008 in Orlando, Florida. This conference also marked the 25th Anniversary of the Lowe Syndrome Association.

2010

JUNE 25TH – 27TH OAK BROOK, ILLINOIS
The 12th International Conference on Lowe Syndrome was held in Oak Brook, Illinois at the Doubletree Read more »
JUNE 25TH – 27TH OAK BROOK, ILLINOIS

12th International Conference on Lowe Syndrome

The 12th International Conference on Lowe Syndrome was held in Oak Brook, Illinois at the Doubletree Hotel from Friday, June 25 through Sunday, June 27, 2010.

2013

JUNE 28TH – 30TH ORLANDO, FLORIDA
The 13th International Conference on Lowe Syndrome was held June 28 - 30, 2013. The hotel chosen was Read more »
JUNE 28TH – 30TH ORLANDO, FLORIDA

13th International Conference on Lowe Syndrome

The 13th International Conference on Lowe Syndrome was held June 28 – 30, 2013. The hotel chosen was the same we used in 2008 — the Hilton Orlando Lake Buena Vista Hotel in Orlando, Florida.

LSA Board of Directors

Lisa Waldbaum
President
Fiona Fisher
Secretary
Jane Gallery
Treasurer
Jessica Hanson
Board Member
Christine Knight
Board Member,
Director, Medical,
Scientific Advisory Board
Theresa Haugen
Board Member
Debbie Jacobs
Board Member
Tiffany Johnson
Board Member
Jeri Kubicki
Board Member
John Macdonald
Board Member
Jenna Maddix
Board Member
Sarina Myers
Board Member
Jeff Smith
Board Member
Jon Wood
Board Member