The Alex Manfull Memorial Fund supports Research, Education, and Treatment of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) to lead the way to greater treatment options for Adolescents and Young Adults (as well as children) and to ensure that never again will another life be cut short due to PANDAS.
- 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.
- 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.
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- We have continued to work toward making Alex’s brain available for research. Alex’s brain is 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 “Preliminary 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.
As part of our effort to raise awareness about PANDAS/PANS/AE and how to effectively treat it, educate professionals, and actively support research in this area , we are especially interested in pursuing:
- Working with psychologists and other mental health workers whose clients may appear to have obsessive compulsive disorder or anorexia, for example, but really have PANDAS/PANS. These patients typically do not get better with the usual psychiatric drugs because the etiology is likely immunologically related and involves brain inflammation. We want to remind practitioners to screen for such triggers by incorporating questions into their initial interviews such as, “Have you recently had strep?” or “Have you ever been bitten by a tick?” or “Have you had the flu?” and, when necessary, to arrange for medical tests to investigate further. Such simple questions may save clients from years of suffering.
- Carrying out pilot programs in Emergency Rooms and University Health Centers that would encourage practitioners to inform patients they have treated for viral or bacterial infections to seek medical attention should they experience a sudden onset of psychiatric symptoms following their infection. The goal is to hasten appropriate treatment, preventing years of suffering.
- Publishing lay and professional papers and posting on social media more information about PANDAS/PANS.
- Conducting a qualitative research pilot study in which post-pubertal individuals diagnosed with PANDAS are interviewed to further our understanding of how PANDAS manifests in adolescents and young adults.