New to PTLS?

If you are a PTLS family member, a clinician with a PTLS patient, an educator, or you simply want to learn more about this genetic syndrome, please begin your search here! We are here to help. Our goal is to educate and support through outreach.

Have faith that you are not alone. This site contains resourceful publications from the PTLS Outreach Foundation’s Medical Advisory Board at Baylor College of Medicine and University of Miami Miller School of Medicine, including those by PTLS researchers and supporting clinicians, newsletters written by families to share their experiences, and, most importantly, a confidential community site where members may speak openly and freely about their daily challenges and the support of hundreds of other families facing the same issues and triumphs.

It’s never easy to hear that your child or loved one must face challenges that the average peer will never experience. Often times you experience the typical phases of disbelief, denial, anger, and finally acceptance. What does this mean for my child now and in the future? What does this mean for us?

Where do I Begin?

PTLS BLOG (Family Stories and Educational Information)


We welcome anyone interested in learning about this syndrome and becoming involved in the foundation’s goal to spread awareness, support, and acceptance of this genetic syndrome and the PTLS Outreach Foundation and its website.

Supporting You on Your Journey,


Julie, Founder and CEO – PTLS Outreach Foundation