Effective February, 2021, Joe Sammartino has resigned from the board after four years of dedicated service. Joe is focusing on and enjoying time with his three young sons. We thank him for his guidance and leadership as a director, attorney, and chair.
The PMSF welcomes Dr. Alycia Halladay, CSO of the Autism Science Foundation as our new president. Alycia has been a staunch supporter of the Foundation for many years and previously had served as Vice President of the Board beginning in July, 2020.
We also welcome two new directors, Pat Furlong and Heidi Grabenstatter. Please see their photos and biographies below:
Pat Furlong is the Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy (Duchenne). Their mission is to end Duchenne. They accelerate research, raise their voices in Washington, demand optimal care for all young men, and educate the global community. Duchenne is the most common fatal, genetic childhood disorder. It affects 1:4,600 boys worldwide and has no cure.
When doctors diagnosed her two sons, Christopher and Patrick, with Duchenne in 1984, Pat immersed herself in research, working to understand the pathology of the disorder, the extent of research investment, and the mechanisms for optimal care. In 1994, Pat, together with other parents of young men with Duchenne, founded PPMD to change the course of Duchenne and, ultimately, to find a cure. Today, Pat is considered one of the foremost authorities on Duchenne in the world.
Heidi Grabenstatter, Ph.D., is the Scientific Director of the International Foundation for CDKL5 Research (IFCR) and a Senior Research Associate of Integrative Physiology at the University of Colorado Boulder. Her research background is in molecular and physiological mechanisms of epileptogenesis and rationale therapy development. Her postdoctoral appointments were in adult and pediatric neurology departments at the University of Wisconsin School of Medicine and Children’s Hospital Colorado, respectively. She is the PI of a NIH-funded laboratory currently focusing on in vivo animal studies of comorbidities associated with epilepsy including cardiac dysfunction and circadian disruption.
As an epilepsy patient herself, Heidi promotes patient-driven research and caregiver engagement in the development of new tools that impact their children’s treatment. Her commitment to rare disease patient advocacy is strengthened by her personal understanding of the extreme challenges that people with epilepsy face and experience as a caregiver to her mother and sister, both of whom passed from rare cancer diagnoses. The combination of her passion, her academic experience, and her patient perspective make Dr. Grabenstatter uniquely positioned to act as a conduit between patients and caregivers with unmet needs and the clinical and research communities in the rare neurodevelopmental disorder space to foster innovative research solutions. Heidi works closely with IFCR’s Board of Directors, MSAB, Centers of Excellence, and International CDKL5 Clinical Research Network (ICCRN) to ensure all projects are scientifically vetted and meet patients’ needs.