Our Progress in 2022

The Alex Manfull Fund is dedicated to raising awareness, educating professionals, and supporting research to advance understanding of the incidence and causes of immune-mediated neuropsychiatric disorders (aka PANDAS, PANS, and autoimmune encephalitis) and to develop the best diagnostic tools and treatments for these disorders, 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.

2022 Accomplishments

• Our very newly assembled board of committed and engaged directors dove right into building a fiscally and strategically strong foundation that will sustain our mission and goals.
• We received our 501(c)(3) designation, enabling TAMF to accept tax-deductible gifts directly in addition to through New Hampshire Charitable Foundation, a donor-advised fund.
• We continue to expand our relationships with top researchers and clinicians in the area of PANDAS/PANS from across the US and in Europe in an effort to learn more about the disorder that took the life of Alex, and that continues to affect untold numbers of children, adolescents, and adults. Such relationships also enable us to help build research coalitions.
• TAMF provided the financial support to establish a brain, brain tissue, and serum repository at Georgetown University Medical Center dedicated to PANDAS and PANS research. Alex’s brain was the first specimen. In January 2022, the PANDAS/PANS and Other Neuroimmune Disorders (POND) Brain Bank was formalized.
• After a competitive application process, TAMF (represented by President Joanne Knight and Executive Director Susan Manfull) was selected to join the GoodWork Incubator program which provides an extensive curriculum on best practices for nonprofit groups. Also included is the opportunity for intensive coaching and a close working relationship with a mentor, both of which Joanne and Susan are taking advantage.
• Contracted a financial management consultant to help establish best practices in accounting and budget management.
• Brought in an outside nonprofit consultant to educate the board on governance and the duties of board members.
• Planned and held our second symposium on October 1, 2022. Entitled “PANDAS/PANS: Recognizing, Understanding, and Treating Immune-Mediated Neuropsychiatric Disorders,” we had 14 esteemed speakers — clinicians and researchers — from across the US and Europe representing nine different medical and scientific disciplines. They presented their research to more than 80 attendees in the medical and mental health professions. All presentations were video recorded and will be available on TAMF website soon.
• Two board members, Sheilah Gauch and Christine Metzer, attended the International Network for School Attendance (INSA) conference in the Netherlands. Sheilah was part of a panel of experts that discussed the role of PANDAS and PANS in school avoidance in a subset of children and adolescents. This was a collaborative effort between TAMF and another advocacy group, EXPAND: The European Immuno-neuropsychiatric Association.
• Susan, William, and board member, Christine Metzner, joined Neuroimmune Foundation and The Louisa Adelynn Johnson Fund for Complex Disease to exhibit at the National Conference for State Legislatures (NCSL) in Denver, Colorado. The goal was to raise awareness in state legislators and other attendees about PANDAS/PANS as well as what roles they can play in developing policies to benefit such patients and their families. We developed many new contacts and were featured prominently in a newspaper article about the event.
• Susan, William, and board member Brandi Dean attended an Awareness House Party, hosted by a donor, in Rockville, Maryland. Several physician-researchers as well as advocates attended and spoke to the crowd of about 40 people about PANDAS and PANS.
• Hosted a Zoom event in honor of Alex’s birthday in which about 30 people attended online or in-person. Food blogger David Scott Allen, now also a member of our Advancement Council, demonstrated how to make pickles, part of the menu he prepared to recognize Alex’s birthday. Kayla Caulfield, actress from the Academy Award winning film “CODA,” also attended and sang “Happy Birthday.”
• Organized and participated in a National PANDAS Awareness Day Walk on October 9, 2022 in Portsmouth, NH in collaboration with four other advocacy groups from the US and Europe.
• Susan was interviewed by Audra Agen for a podcast entitled “Women in the Arena.”
• Sheilah, Christine, William, and Susan gave multiple talks (online and in person) about PANDAS/PANS to various professional and lay groups.
• Susan and William traveled to Rotterdam to meet with René Akre, Chair of the Board of Directors at EXPAND, The European Immuno-neuropsychiatric Association, to discuss collaborative possibilities.
• Susan and William visited Erasmus Medical College in Rotterdam, the Netherlands to meet with Prof. Peter van der Spek about role of genetics in PANDAS/PANS.
• Established an Advancement Council, composed of individuals who bring their expertise to advise and support TAMF on specific projects or ongoing fundraising campaigns.
• Created an educational brochure about PANDAS/PANS and other immune-mediated neuropsychiatric disorders, 750 of which have already been distributed to physicians, families, patients, and the general public.
• Contracted a producer/director to create a short video about PANDAS/PANS and our efforts to raise awareness, advance education of clinicians, and support researchers.
• All board members have worked hard to further educate themselves about immune-mediated neuropsychiatric disorders and to actively support the mission of TAMF.

Past 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.
• Transitioned financially and operationally from the Pandas Network.
• 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, rheumatology, 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.