Cares Spotlight: MED13L Foundation

EDA is excited to include MED13L Foundation as a Cares charity of choice for 2024. MED13L is an extremely rare developmental disorder that causes intellectual disabilities, speech impairment, and distinct facial features. This partnership was recommended by Cares Committee officer and BBCI Safety Coordinator, Kim Killion who is a close friend of the MED13L’s Foundation founder. MED13L Foundation joins Heroic Gardens, Turning Points for Children, Make A Wish - Philadelphia, F5 Alumni Band Association, We Care Special Sports, and The Wardrobe as EDA's 2024 charities of choice. 

About MED13L 

MED13L is a condition that arises from disruptions in the MED13L gene's normal function within the body. It operates on a spectrum, with some symptoms being more moderate or severe than others. In addition to the intellectual, speech, and physical features, individuals with more severe cases can experience epilepsy or congenital heart defects.  

About the Charity 

The MED13L Foundation was founded by Kelly Sexton in 2017, shortly after her two sons were diagnosed with this neurodevelopmental condition. While happy to finally put a name to the symptoms that her children were experiencing, Sexton became concerned by the lack of research around their condition. At the time of their diagnosis, her sons were two of only 15 published cases in the world. Today, this number has grown to 100, but research on the disorder remains sparse. Observing firsthand the overwhelming process of trying to learn more about their sons’ disorder, Sexton and her husband founded the MED13L Foundation to connect families dealing with similar issues. Together, these families exchange information about the conditions of their loved ones with MED13L, raise awareness about the condition, and advocate for more research.  

EDA’s partnership with the MED-13L Foundation was recommended by Cares Committee officer and BBCI Safety Coordinator, Kim Killion. Killion is a family friend of Sexton and recognizes the need for more awareness on MED13L. Killion brought the charity to the EDA Cares Committee, who embraced the opportunity to contribute to this worthy cause. “Moving forward, myself and the dedicated members of the Cares Committee look forward to contributing to this great cause” exclaims Killion. 

"One of the founders is a close family friend, and I have witnessed firsthand some of the hardships they’ve endured while caring for their sons. We still know so little about this condition, which is why it is essential for the community to come together and foster empathy, compassion, and solidarity with those affected by MED13L."

- Kim Killion | Safety Coordinator  | BBCI

Getting Involved 

To date, EDA employees have already helped raise nearly $9,000 for MED13L. This year, EDA is committed to helping bring awareness to the cause and providing needed resources to the local MED13L community. Killion says, “we hope that our collective effort can inspire the scientific community to conduct more research, that leads to advancements in treatment and support.” Whether through fundraising initiatives or volunteering efforts, we are dedicated to making a meaningful difference in our community. Amplifying the voices of our community members with a cause is just one of the ways that we are better, stronger, and more successful together.