The Lowe Syndrome Association (LSA) is a parent-founded, family-led community working to improve the lives of individuals with Lowe syndrome and the families who love and care for them.
It Began with a Letter
In 1981, Kaye McSpadden wrote to Exceptional Parent magazine hoping to find other families raising sons with Lowe syndrome. Other families saw her letter, reached out, and began forming the first connections and friendships that would become LSA.
Where We Are Today
As the community grew, so did our work: sharing accurate information with doctors, schools, hospitals, and genetic counselors; bringing families together through conferences; and supporting research to better understand Lowe syndrome.
Today, the LSA connects families, shares trusted medical and educational information, and works closely with our Medical Advisory Board of physicians and experts dedicated to improving care for boys and men with Lowe syndrome.
Our board is made up largely of parent volunteers whose own families have been affected by this ultra-rare disease, and who are deeply committed to ensuring that no family faces this journey alone.
Two of our highest priorities are strengthening community through biennial family conferences and raising funds to advance research.
Our goal is clear: to help drive progress toward viable treatments and better outcomes for boys and men with Lowe syndrome. Together, especially when we work proactively, we can change what is possible.
From that first act of connection to the very latest funded research initiatives, the LSA has grown into a family-led organization determined to ensure no family faces Lowe syndrome alone. Membership is free to anyone who is interested in joining the LSA. To join, we simply ask that you share your contact information.
Our Commitment to Transparency
We are committed to the highest level of transparency and accountability. Below you can find our financial information and governing documents.