We’re sharing a new support need for our family as we plan to attend the 2026 Malan Syndrome Family & Scientific Engagement Conference, taking place July 24–27 in Philadelphia.

This conference is incredibly important to our family. It brings together Malan Syndrome families, researchers, and clinicians from around the world and for Presley, it means connection, understanding, and care that simply doesn’t exist close to home.

While in Philadelphia, we will also have the opportunity to bring Presley to the first-ever Malan Syndrome clinic initiative at Children’s Hospital of Philadelphia (CHOP). This is a meaningful and rare chance for her to be seen by providers who specialize in her condition and to help inform future care for others with Malan Syndrome.

We plan to drive to Philadelphia, and expenses will include travel, lodging, meals, and conference-related costs. Any support, whether through donations or gift cards, would help make this possible and ease the financial burden of this trip.

We are also actively applying for grants, and any additional support during this time is deeply appreciated.

Thank you for walking alongside our family, supporting Presley, and helping make opportunities like this possible. Your love truly makes a difference.

Travis, Sky, Lauren, Presley & Brady