Who we are
We’re a group of parents who want to make a difference.
Our goal is to connect families impacted by this rare disorder and offer the support they need—whether that be a peer-to-peer connection, insight about available services and therapies, or the opportunity to engage in cutting-edge research.
How it Started
When your child is diagnosed with a MEF2C-related disorder, you learn some essential skill sets: you become a therapy scheduler, a research-publication-reader, an amateur speech pathologist, a translator for your child, and a tireless advocate.
Most importantly, you learn that life is not all about getting top grades in school or making the varsity team; it’s about meaningful growth, and enjoying our families and loved ones.
The six of us met face-to-face at a gathering in the fall of 2024, and realized how much we have in common: we’re motivated parents who want the best for our kids. And we’re professionals and parents with many skills to offer our community. We looked around and realized: there aren’t that many of us, and we gotta stick together to do something great.
As co-founders, we represent five families, but we want to represent all families with MEF2C-related disorders.
Our Mission
Connection
We connect, support, and empower families who have loved ones with MEF2C-related disorders. We are a cooperative and welcoming group of parents that offers peer-to-peer support. By joining our community, we hope families will feel empowered to advocate for their loved ones and prepare themselves for the unique parenting journey that comes with raising a MEF2C child.
Research
We are also advocates for curing this rare disease, and aim to connect clinicians, researchers, and biotech companies with our patient population. We are committed to furthering research and treatments that will have a meaningful impact on our children’s quality of life. We believe we are stronger together, and we are hopeful that we will eventually treat or cure this rare disease.
The Co-Founders
-
Meredith San Antonio
Executive Director of Strategy
Meredith is a marketing professional with expertise in branding and campaign strategy. Beyond her career, she is deeply committed to supporting families impacted by MEF2C-related disorders, championing advancements in research, and fostering inclusivity and compassion. Residing in Dallas, Texas, with her husband, three children, and their lovable puppy, Meredith is fueled by optimism and unwavering faith in a future where a cure for MEF2C-related disorders becomes a reality.
-
Stephanie Fitzpatrick
Executive Director of Advocacy
Stephanie Fitzpatrick is a Healthcare Administrator in the U.S. Air Force with over 15 years of leadership experience in healthcare management, including financial oversight, resource management, logistics and clinical operations. Stephanie has always been passionate about fighting for those that are unable to advocate for themselves, so when her daughter was diagnosed with a debilitating condition she knew that she could not sit idly by. Stephanie lives in Colorado with her daughter balancing her military obligations, extensive therapies and advocacy efforts for everyone impacted by MEF2C-related disorders.
-
Chris Knihnitski
Treasurer
Chris Knihnitski brings extensive CFO expertise spanning nearly 20 years across various industries, specializing in driving business growth, most recently in a global agri-food research organization. He is passionate about supporting research and raising awareness for MEF2C. Chris lives in Saskatoon with his wife, three children, and dog, balancing his professional success with a deep commitment to advocacy. His leadership and dedication to making a positive impact extend beyond business, as he works to help families affected by MEF2C.
-
Aleah Vickers
Director of Operations
Aleah is an attorney specializing in privacy and data security. Her work with the MEF2C Family Foundation is inspired by her son Beau, who shows up ready and willing to work hard every single day, and the incredible families she has met since receiving Beau’s diagnosis. She lives with her husband, two boys and rescue pup in Westchester, NY.
-
Erin Kindrachuk
Director of Research
Erin Kindrachuk is an experienced Director of HR with over 15 years in the field, bringing a wealth of leadership and expertise to her role. She has a proven track record of bringing people together to drive meaningful results. Her life took an unexpected turn in 2024 when she discovered her third child was diagnosed with a rare genetic condition, which ignited her passion for helping other rare disease families feel less alone. Erin lives in Saskatoon, Saskatchewan, with her husband, three children and a furry goldendoodle, balancing her career and her dedication to fighting for a cure for MEF2C.
-
Caroline Claflin
Director of Communications
Caroline Claflin is a communications professional specializing in content development for print and web. With a degree from the Rhode Island School of Design, she is passionate about design, film and art. Caroline lives in Massachusetts with her husband and two sons—the oldest of which has a MEF2C-related disorder. As a parent of a child with a rare disease, her goal is to make other parents going through similar circumstances feel less alone.