Our Progress

The Alex Manfull Fund supports Research, Education, and Treatment of PANDAS (Pediatric Autoimmune The Alex Manfull Fund supports awareness, education, and research to further understand the incidence, etiology, and best treatment of post-infectious neuroimmune disorders (aka PANDAS, PANS, and Autoimmune Encephalitis) with an emphasis on their manifestation in Adolescents and Young Adults. Our ultimate goal is that no life ever again be cut short – or interrupted – by any neuroimmune disorder.

Accomplishments

  • William and Susan prepared testimony in support of New Hampshire Senate Bill 224 which would require insurance coverage for pediatric autoimmune neuropsychiatric disorders. Susan testified before the Commerce and Consumer Affairs Committee on April 23, 2018 in the New Hampshire House of Representatives in support of this bill, which passed and was signed by Governor Sununu on July 19, 2018. New Hampshire is only the fifth state in the country to pass such legislation requiring treatment of these devastating disorders to be covered.
  • On February 2 and 10, 2022, William testified again before the Commerce and Consumer Affairs Committee in the New Hampshire House of Representatives in support of House Bill 1501-FN. This Bill proposed a revision to the earlier Bill 224 of removing the sunset provision indicated for 2024.
  • Susan attended SANE Sweden 2019 International PANS Conference in Malmo, Sweden. This was a two-day conference dedicated to presenting and exchanging ideas regarding the most recent clinical and research findings about PANS, PANDAS, and other related conditions.
  • Susan spoke before approximately 100 medical professionals at a MedStar Georgetown University Hospital conference entitled, “Autoimmune Encephalitis Post-Streptococcal Evaluation & Treatment—A Way Forward.” Her presentation was entitled, “The Gravity of a PANDAS Diagnosis.”
  • Susan addressed about 300 attendees at Day Two of the aforementioned conference, a day dedicated to issues relevant to parents of PANS and PANDAS children. 
  • William and Susan organized a symposium in Portsmouth, New Hampshire on PANS, PANDAS, and other related disorders. Entitled, “PANDAS/PANS:  Advances in Diagnosis and Treatment for Post-Infectious Autoimmune Basal Ganglia Encephalitis,” the target audience was physicians and mental health professionals, and we secured eight nationally recognized, expert physicians, clinicians, and researchers to present the latest information on these conditions. Over 9O people attended (and we had a waiting list).  
  • As part of an awareness campaign, we organized “Art by Alex: A Retrospective” which was a selection of pen and ink drawings, paintings, and photographs from the large portfolio of art created by Alex across her life.  It was exhibited at Seacoast African American Cultural Center in Portsmouth, New Hampshire for two months.  Material about PANDAS and how it affected Alex’s life was available.
  • Since Alex’s death, we have met with many of the nation’s top researchers and clinicians in the area of PANS/PANDAS and Autoimmune Encephalitis to learn more about the disorder that killed our daughter, and affects untold numbers of children, adolescents, and adults. The professionals we have interviewed are affiliated with some of the top research centers in the country such as Harvard/ Massachusetts General Hospital, Georgetown University Hospital, Columbia University, University of Arizona, University of Arkansas, Dartmouth College, and NIMH.  In addition, we have interviewed many professionals in private practice as well as many parents.
  • We have continued to work toward making Alex’s brain available for research. Until recently, Alex’s brain was the only known brain diagnosed with PANDAS in our country and, likely, in the world. The Lab of Pathology at National Institutes of Health (NIH) provided a “Final Anatomic Diagnosis” of Alex’s brain; it revealed damage in the basal ganglia region of Alex’s brain and a review of this report by outside experts in neurology, psychiatry, and neuroscience strongly suggests that studying her brain will advance the understanding of PANDAS and PANS. In January 2021, her brain tissue (and related material) were finally successfully transferred from NIMH to Georgetown Brain Bank where relevant research can, at last, begin.