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.
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.
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.
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.
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.
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.
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.
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.
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.
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 LSA Clinical Database exploration meeting at Mayo Clinic, Rochester, MN.
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.
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.
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 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.
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.
Invitations to participate in the online 2008 Comprehensive Survey of Lowe Syndrome went out to 175 participates.
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.
LSA awards $25,000 grant to CT researcher to conduct Phase II of the 2008 Comprehensive Survey on Lowe Syndrome – Analysis and Report
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 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.
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 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.
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.
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 »
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 »
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 »
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 »
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.
June 28-30, 2019
Hotel Reservations now available – book now!
San Diego Marriott Mission Valley
Join us for a weekend of education, family support, social events and research updates.
Featuring Keynote Speaker, Amy Morin, LCSW
Author of international best seller,
13 Things Mentally Strong People Don’t Do and
13 Things Mentally Strong Parents Don’t Do.
Schedule of Events coming soon.
Childcare provided.
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
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.
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
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
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
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
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.
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.
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.
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
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.
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.
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.
