Meet our PTLS Parents Team!

At PTLS HOPE Research Foundation, the ultimate challenge we face: Balancing the pursuit of scientific and technological progress while ensuring the safety of our children poses a complex dilemma. What does rectifying a genetic error in someone who has grown and evolved with it for years truly entail?

“The solutions to these pressing questions remain unknown, yet our dedication to uncovering them remains unwavering”.

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  • Mom to Jimena, 2 Our Trustee & Marketing Lead, Lucia, is passionate about spreading awareness & knowledge of PTLS. Her work is rooted in sharing data driven information that parents can rely on & use to advocate for their children. Lucia believes research will not only provide critical information about PTLS and potential treatments, but will also guide and help parents and their children live a better life full of possibilities & hope.

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  • Our Trustee & Digital Lead, Mandy who is mom to Wren, 2 diagnosed at 14 months old “Hope is so so important to us, just knowing there may be a very realistic way in the future to safely help our children overcome their challenges and free them from the debilitating symptoms of this syndrome is enough for me to put my absolute all into this, no matter how long it takes” even if it can’t help my daughter id be happy knowing we may be able to help others in the future who are diagnosed.

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  • Trustee Amy, mom to Chloe, 19. “My journey began 18 years ago with a simple yet profound desire — to unearth solutions and hope for my daughter Chloe. Along the way, I've worn the hat of a cheerleader, an investigator, and a relentless advocate. In my role as a research coordinator, I've been the matchmaker between brilliant minds and compassionate hearts, bringing together pharmaceutical companies and research initiatives. This collision of minds has opened doors to new research avenues and sparked hope for groundbreaking discoveries.”

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  • Over a decade ago, Shelly founded the Potocki Lupski family support group on Facebook, which continues to embrace and support parents of children with PTLS today, offering a safe space for everyone. Shelly's dedication stems from her own journey with her son, Jamison now 18 was diagnosed at 2 and remains nonverbal, he inspires her tireless efforts. In addition Shelly operates as our dedicated merchandise manager, personally uploading, designing, printing and shipping all of the amazing merchandise we sell on the website helping us raise more money for research, thank ou for your valuable contribution Shelly!

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  • Advocate/Community Engagement Coordinator, Stephanie Watson Lewis, is mom to Rowan who is 11. Rowan was diagnosed with PTLS at age 2. The PTLS Hope Research Foundation brings hope to her family by providing access to science and resources that can help shift the paradigm of a PTLS diagnosis. Stephanie has been in healthcare and advocacy for over 25 years. She brings a broad base of knowledge to the PTLS Hope Research Foundation, from educational advocacy to medical advocacy, and everything in between. She is excited to support our PTLS families.