Hello everyone! Our son, Luke, is a happy little boy born on June 28, 2019. In 2021, Luke was diagnosed with a rare genetic condition called Phelan-McDermid Syndrome, PMS. Luke struggles with global developmental delay, hypotonia, significant speech delay, and other issues that affect his daily life. Despite all of that, he is one of the happiest little boys in the world. Phelan-McDermid Syndrome is known to affect approximately 3,000 people worldwide (it is thought to be a much higher number, but many go undiagnosed).  

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There currently is no cure for Phelan-McDermid Syndrome. 

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Treatments include speech therapy, occupational therapy, applied behavior analysis therapy, physical therapy, and other supportive measures. Luke will most likely require help throughout his entire life, and we want to make sure he is financially secure as he grows old and can get the best treatments available. The scientific front is very exciting right now for Phelan-McDermid Syndrome.

Multiple experimental studies are actively underway with plans for more in the future. Jaguar Gene Therapy, a growing company based out of Illinois, is working on gene therapy for under-represented diseases and currently have a pipeline for shank3. This is huge, meaning gene therapy could be possible for Luke very soon. Learn more here!

This is the largest beacon of hope we have received-the sooner Luke can receive this treatment, the more he will benefit from it! We continue to spread awareness, advocate, and raise money for Luke and the Phelan-McDermid Syndrome Foundation. Luke's future is continuously unknown, and it is more important that ever that we support him and help maintain his highest quality of life.

Thank you all for your continued support; please reach out with any questions you may have. Get involved with the Locals Phor Luke Golf Tournament, check out the blog, or make a donation.

Luke continues to be the luckiest boy around to have such a loving community surround him. We look forward to seeing everyone at the tournament!

All our love and appreciation,
Michael & Courtney

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