The CDKL5 Forum in 2019 was momentous. It was the beginning of an IFCR Initiative. The INITIATIVE was simple: translate our children’s non-verbal language and identify scientists and technologies that could do that.

The forum was hosted by the Loulou Foundation. I had the honor of being on the panel of presenters. At the close of the Forum, the number one outcome measure desired by parents and caregivers was improvement in communication. I volunteered to initiate a project that would reveal that our children had plenty to say, even though many lacked a voice or an assistive device to speak for them.

I spent two years poring through medical journals looking for articles focused on our children’s unique forms of communication. Then one day I found an article published in IEEE conference papers. IEEE is the Institute of Electrical and Electronics Engineers  It reported a breakthrough. With a $2.7m grant from the European Union, the Poznan Supercomputing Networking Center (PSNC) built a prototype non-verbal communication device utilizing facial expressions, body movements, vocalizations, and physiological signals, as well as eye tracking and neurological biomarkers. The big surprise was the participants were children with profound intellectual and multiple disabilities. In essence, our children.

Pushing through language barriers, I arranged a mutual agreement whereby I would get them into the pediatric neurology spotlight.

In 2022, I attended the CDKL5 Science Forum in Cambridge, Mass, hosted by the Loulou Foundation, where I met Teruyuki Tanaka, MD, noted CDKL5 researcher, who was chairing the Second CDKL5 Asian Conference hosted by the University of Tokyo, Loulou Foundation, Boston Children’s Hospital, and Harvard. He invited Michal Kosiedowski of PSNC and me to present their Project at the Asian Conference in September 2023.

In the same week, Michal and I did a presentation to the Poznan Supercomputing Networking Center’s worldwide affiliates. We were soon contacted by the University of Notre Dame. They have a Center for Rare Disorders. We partnered and they established a Voice Project and website, Voice4PIMD, and we held our first worldwide Workshop at Notre Dame in the fall of 2024.

In 2022, I began networking at my hometown engineering school. It is the Rensselaer Polytechnic Institute in Troy, New York. RPI is the oldest engineering school in the country with one of the most comprehensive programs in biomedical and biotech engineering. Along with a VP of Research Development and the Director of the Biomedical Center, we mentor an Undergraduate Research Team organizing a fall conference (Nov 7-8). 

It will be a groundbreaking event on the campus of RPI when I introduce the  Vice President of the University of Notre Dame, and a representative of the Poznan Supercomputing Networking Center, to the students, faculty, and officers of RPI. It will be hosted by the Undergraduate Research Team. They have made a long-term commitment to this Voice Project for our children.

The conference will focus on early identification of autism spectrum disorders and the development of AI-assisted technologies to develop and recognize our children’s communication skills.

This is a parent-driven event initiated by IFCR, and for it to succeed and flourish, we need to show our support. Our plan is a series of conferences to develop a robust international consortium supporting this effort. To that end, I will be exploring ways to support this effort, including possible grants from New York State. 

Ed Fennell for Haley Elizabeth Hilt and
Chatting with Haley and Poppy 
Founding Members
Voice Project
Rensselaer Polytechnic institute 
University of Notre Dame