At the MSL3 Syndrome Foundation, we’re working to spread awareness, connect with families and support research about MSL3 syndrome.

Our Mission

Our mission at the MSL3 Syndrome Foundation is to raise global awareness about the ultra-rare MSL3 (Basilicata-Akhtar) Syndrome. We hope to connect with families across the world and offer support and resources to navigate this challenging genetic disorder and to raise funds in support of research and treatment of MSL3 Syndrome.

We envision expanding our community by spreading awareness to the general public, doctors, researchers and, most importantly, families seeking answers about this rare diagnosis.

With information comes power. As we connect to more families and the medical community, we’ll raise our public profile and collective voice. Our goal is to spark interest in research and treatment that will positively affect those diagnosed with MSL3 Syndrome.

The Team

Get to know the dedicated board members behind the MSL3 Syndrome Foundation—all of whom are parents to children affected by MSL3 syndrome.

Sarah Medley

President and Founder

Sarah was born and raised in Tucson, Arizona. She’s a two-time Wildcat alum, earning both her undergrad and law degrees at the University of Arizona. She works as a mental health attorney, representing clients facing psychiatric civil commitment proceedings. She and John married in 2012 and have two wonderful children, Jack and Shay. When not working or with family, she can usually be found hiking somewhere in the beautiful mountains and desert of southern AZ. 

Michael Ann Thompson

Vice President

Michael Ann was born and raised in NW Arkansas and currently lives in Fayetteville, AR with her husband Jeremy and their sons, Zane and Dash, and daughter Bo. She works as an Operations Specialist in multi family real estate. The Thompson’s are avid Razorback fans and love attending games and calling the Hogs any chance they get. Michael Ann has a deep interest in medical research and hopes that the MSL3 foundation can inspire more research studies for the MSL3 community.

John Medley


John was born and raised in Tucson, Arizona. He graduated from the University of Arizona in 2008 and works as an appraiser in the Tucson area, where he lives with his family. He married his wife Sarah in 2012 and they have two children together, Jack and Shay. In his free time, he enjoys doing outdoor activities with his family and playing golf.

Candi Buie Stephens


Candi was born in North Carolina and raised in Florida and North Carolina. At the age of 24, Candi decided it was time to see the world and became a flight attendant for what she thought would only be a few years. That few years has turned into a 22-year career flying the friendly skies. Candi is also the assistant manager for a pet sitting company that specializes in caring for geriatric pets as well as pets with special needs. Candi lives in Greensboro with her husband, Lee, her two sons, Walker and Wylee, and her old man beagle, Beckham. In her down time, Candi enjoys reading, baking or catching up on the latest Netflix series

Our Story

After an extensive diagnosis process, Sarah Medley’s son Jack was diagnosed with MSL3 Syndrome. The family was subsequently devastated to learn how little information there was on the disorder. Turning to social media in an effort to connect with other families, Sarah started a support group on Facebook. And since then, our community has grown slowly, but surely.

“Each time we connect with another kiddo, we are overcome with emotion. We remember the feeling of receiving the diagnosis only to be left lonely and with more questions. Not anymore! Families immediately have a place to go for support, answers and shared love of these amazing children. Jack has changed our lives in the most amazing way.”

Sarah Medley, President and Founder of MSL3 Syndrome Foundation

It quickly became clear that a foundation would be the best way for our community to fundraise for our efforts to connect families, support research and raise awareness about this ultra-rare disorder and the special community affected by it.

In the Spring of 2021, we became an official 501(c)3 organization. Together, our community has been working hard to elevate the status of the MSL3 Syndrome Foundation so the world can get to know and support these amazing families.