Parents/Caregivers ACT NOW and complete the Lowe Syndrome dental survey
Circle of Care. Vision for a Cure.

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most importantly,

Happy Boy with LS, Mom and son with LS holding hands

You may recall that the last edition of The Beam mentioned an upcoming dental research survey conducted through Tufts University School of Dental Medicine (TUSDM). This survey is sponsored by Principal Investigator Dr. Cheen Loo and pediatric dental resident Adam Lowenstein. It is a 22 year follow-up to the survey conducted by Dr. David Tesini from our Medical and Science Advisory Board. The survey aims to evaluate dental care and dental needs, conditions, and attitudes in comparison to the general population. It is officially open for completion until the deadline of December 9, 2021 – 12:00 AM at the following link:

Thank you in advance for taking the time to complete this survey. The results will be shared at the next international Lowe Syndrome Association conference, June 24-26, 2022.

Take the Survey!

June 24-26, 2022


Dallas, Fort Worth, TX


The Lowe Syndrome Association Unites






Please complete the
Patient Registry below.


Coordination of Rare Disease Patient Registry

If you or a loved one has been diagnosed with Lowe syndrome, you can make an important contribution to future research! Although the registry is currently available only in English, you may receive help from a trusted physician or family member to enter your information in English.


For New Patients


For Current Registrants

Update Your Info

For Researchers with IRB Approval


Watch a Video About CoRDS


The Sullivan family hosts a truck show to raise awareness

Thomas and Wendy Sullivan from Alabama host “Lowe Syndrome and Chrome”, a truck show to benefit the LSA.  More than 40 Big Trucks and drivers gathered together to spread awareness and raise funds for Lowe syndrome. The Sullivans’, parents of Waylon who has Lowe syndrome wanted to raise awareness and help the community. All funds have been donated to the LSA’s Leland McSpadden Research Fund. Thank you to the Sullivan Family and all their supporters. View the article here!

Sullivan Truck with Lowe syndrome awareness graphics and names of boys with Lowe syndrome

Other Ways
You Can Support Us.

Icon for Make LSA Your Designated Charity for Birthdays & Special Occasions

Make LSA Your Designated Charity for Birthdays & Special Occasions

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Shop Online at Places That Support LSA

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Check Out More Fundraising Ideas

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