The Alex Manfull Memorial Fund
Supporting Research, Education, and Treatment of PANDAS in Adolescents and Young Adults
Alexandra “Alex” Coulter Manfull – prolific writer, voracious reader, artist, photographer, New York Times crossword whiz, television/film buff, fashionista, runner, financial analyst, dear friend to many, and daughter extraordinaire — died Tuesday, August 7, 2018 in Washington, D.C.
As a graduate of Phillips Exeter Academy and Princeton University, she had a successful start on Wall Street, had just started an exciting job in finance in Washington, D.C., and was described as a rising star. Alex had her whole life in front of her. Instead, she succumbed to PANDAS at 26 years old.
PANDAS was initially conceived of as a pediatric condition, but Alex’s battle with this debilitating autoimmune brain disorder clearly confirms it can surface on the cusp of young adulthood. At 19 years old, Alex was diagnosed with streptococcus and, shortly after treatment, developed unambiguous OCD symptoms. After a revolving door of physicians unfamiliar with PANDAS, Alex diagnosed herself when she was 24 years old. It would be two more years before Alex would be able to see a doctor who specialized in PANDAS. Finally, in the immensely capable hands of this doctor, she was poised to begin the second component of treatment. Tragically, Alex experienced a “flare” and, completely unexpectedly, she became a casualty of this horrendous condition.
Alex’s life, especially in her last years when she battled the debilitating symptoms of PANDAS, is a testament to her strength of spirit and character. The harsh reality is that there are only a handful of physicians and researchers who are even aware of PANDAS and most health insurance companies do not pay for treatment. Alex was fortunate and persevering enough to connect with one of the best physicians in the country — not everyone even knows how to begin such a search. It is urgent that this situation changes.
Alex told us that as soon as she was well, she intended to educate everyone about PANDAS. The Alex Manfull Memorial Fund supporting Research, Education, and Treatment of PANDAS in Adolescents and Young Adults has been established in the hope that other young adults, as well as children and adolescents, shall have greater treatment options and that never again will another life be cut short due to PANDAS.
Please note how you wish your name(s) to be listed – or, if you wish to make your gift anonymously – in the “Add special instructions to the seller” field on the PayPal form.
PANDAS Network is a 501 (c)(3) non-profit corporation.
Donations made to PANDAS Network are tax deductible – FEIN #37-1666562.
Prefer to mail your donation?
PANDAS Network/Alex Manfull Fund
655 Oak Grove Avenue #1373
Menlo Park, CA 94026
The Alex Manfull Memorial Fund supports the Research, Education, and Treatment of PANDAS in Adolescents and Young Adults. The following are some of the activities and events that have been undertaken by the fund in accomplishing its objectives.
The Alex Manfull Memorial Fund in Action:
Videos now available! Our first significant foray into Raising Awareness and Education about PANDAS was to host a symposium entitled "PANDAS/PANS: Advances in Diagnosis and Treatment for Post-Infectious Autoimmune Basal Ganglia Encephalitis." Held on October 26, 2019 in Portsmouth, New Hampshire, we had a stellar panel of leading physicians and researchers in the field of PANDAS and PANS. In attendance were a little over 100 attendees -- mostly physicians, psychologists and other therapists, and nurses -- along with advocates and parents. Our panel comprised the following distinguished physicians, researchers, and educators and their presentations are available for your viewing by clicking here.
Please bear in mind that this symposium was geared toward raising awareness and educating our target audience of practitioners. It was also an opportunity for these professionals to exchange ideas: in that spirit, some of the research presented may represent work in progress and, therefore, any apparent conclusions may be tentative in nature.
Accomplishments in 2019
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.
For over a year, we 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, and NIMH. In addition, we have interviewed many professionals in private practice as well as many parents.
Goals for 2020:
In 2020, our goals are to continue to raise awareness about PANDAS/PANS/AE and how to effectively treat it, and we will actively support research in this area by expanding our efforts to include:
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, if 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.
Constructing and distributing a questionnaire to further understand PANDAS/PANS in post-pubertal patients.
Funding research projects, case study papers, and post-doctoral positions dedicated to advancing research in PANDAS/PANS.
Encouraging further examination of the pathological features of Alex’s brain, 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.