Board of Directors

Liz Dellureficio: President and Founder

Our beautiful daughter developed epilepsy at 5 months old. Seeing your infant having seizures is a soul crushing experience. We had no answer as to why the seizures and other issues were happening, but I never gave up trying to find out. Finally, when she was 15, whole exome genetic testing became available. A diagnosis of a de novo mutation in the SNAP25 gene was found to be the cause of her epilepsy and other issues. Our daughter was the first to be diagnosed with this, so there was no community to join, and no targeted treatments to try. I immediately got to work and started googling SNAP25. I reached out to several scientists who were incredibly generous with their time in educating me about what a SNAP25 mutation could do.

For a couple of years, no other patients were found. I started a Facebook group and slowly several other parents found their way to it, which was a joy to connect with others. I kept up my internet outreach with scientists, and now there is research happening world-wide, that we as an organization would like to support.

Professionally I have worked as a Film and Television Post Production Producer and Editor for the past 30 years. My main job of course, is loving and taking care of my wonderful daughter, who is the light of my life.

Anthony Dellureficio: Director

Anthony Dellureficio, MLS MSc., is the Associate Librarian for Research Data Management at the Memorial Sloan Kettering Cancer Center Library. He joined the MSK Library in 2019 to help launch a new Research Data Management program to support researchers by developing, implementing, and integrating resources that focus on data management plan creation, data discovery, and data as a component of the publication process. Prior to joining MSK, Anthony led The New School Library and Archives systems and technology team for about ten years. He has previously worked as the digital archivist at Cold Spring Harbor Laboratory, rare medical text cataloger at the Johns Hopkins Institute of the History of Medicine, and archivist at the Johns Hopkins Medical archives. His academic areas of interest include the history of science, technology, and medicine and classical genetics.

Anthony was just a teenager when his cousin was born with a de novo mutation of the SNAP25 gene. At the time she had no specific diagnosis, and he witnessed the daily challenges and perseverance faced by her and her parents as they sought medical care, information, and community. Despite the difficulties, their successes individually and as a family inspire hope and empathy. As a board member, he aspires to support this community with compassion.

Dr. Stephanie Soalt: Director

Dr. Stephanie Soalt is a licensed Naturopathic Doctor and a creative arts therapist. She practices general medicine with a specialty in working with children and adolescents with autism, ADHD, anxiety, neurodevelopmental disorders, and behavioral, emotional, and social difficulties.

Dr. Soalt’s involvement and interest with SNAP25 began when her cousin was diagnosed with a mutation in the SNAP25 gene. For many years her cousin had no real diagnosis that explained her complex health problems. Now there’s an answer and hope for more research into this genetic disorder. Dr. Soalt was delighted to be asked to be a board member of the SNAP25 Foundation and to play a part in raising funds for more research and awareness, and hopefully more answers.

Dr. Soalt has seen the trials and tribulations that her cousin has been through and has also seen the many successes in her life, and admires how she has grown in to such a strong, powerful woman. She hopes to help others with this genetic disorder by being a part of this wonderful endeavor. Her heart and love goes out to the SNAP25 community.

Sara Brandt: Vice president

I am Sara and I live in Sweden with my husband, son and daughter. I have a background in international relations and a master’s degree in global political studies with a special interest in human rights. I am passionate about making a difference and when the opportunity to join as a board member in the Snap25 Foundation I did not hesitate. Being a Snap25 parent may not be easy but I will for sure never give up!

I believe in my heart that what one person does can make a great difference for many others.

Loving kindness along with faith in science is what keeps me going. Thank you for supporting our cause!