Posted by: Kelly Sexton
Hello MED13L Families,
The MED13L Foundation is coordinating an in-person Family Meet Up on Sunday April 30th, 2023 at the Adventure Aquarium in Camden, NJ at 11:30 am, with a 3:00 pm pizza party. The MED13L foundation has agreed to cover the aquarium tickets for the MED13L individual + 1 family member.
RSVP HERE for the Aquarium Family Meet Up
This Family Meet Up is aligned with Global Genes Rare Drug Development Symposium event in Philadelphia, PA May 1st – May 3rd, to further our understanding about therapy development and engage in networking opportunities. You can learn more and sign up [here].
RSVP HERE if you also plan on attending the Conference
On Sunday, there will also be opportunities for research samples to be collected! Please consider attending this event to connect with other MED13L Families and also support the research efforts to find a treatment or cure for MED13L Syndrome.
See you soon!
Kelly Sexton
Vice President, MED13L Foundation
Kelly Sexton
Kelly is the Founder and former President of the MED13L Foundation. Following the diagnosis in 2016 of her two sons, Dylan and Logan, she immediately saw the need for an official organization to advocate for families affected by MED13L.
