Video: Thoughts on PANDAS and Autoimmune Encephalitis
Founded in 2009, Diana has built PANDAS Network (PN) from the ground up by developing stakeholder outreach, marketing and collaborating with healthcare experts. PN has grown from the story of her one child* and the outstretched hand of another mother from Illinois that has traveled this path as well. Together, they discussed their paths from treatment to healing, which has now grown to thousands of families worldwide. In 2013, PN was honored to be chosen as a National Institute of Mental Health Outreach Partner. PN continues to be the leader in driving awareness of this emerging encephalitic illness (PANDAS/PANS). *Her second child also developed PANDAS and because of lessons learned from the sibling had a rapid treatment plan.
The primary initiative of PN has been to lead the investigation in early research of the PANDAS/PANS diseases with seed-money grants funded by families. This has proven to be a critical step in the growing recognition of this illness. Research from each Center of Excellence in the U.S. indicates that the blood–brain barrier is impacted by the autoimmune system in PANDAS/PANS—and this promises to open, forever, new pathways into brain science.
In Diana's Words: "My goal for since 2007 has been to ensure both of my acute onset age 7 children (boy and girl) would be healthy into adulthood. In 2008, doctors felt they would "outgrow" PANDAS; I wanted to be sure it was true. I followed a "cohort" of 200 PANDAS acute onset children as a "citizen scientist." This cohort is evenly matched boys and girls from onset ages 7~10, current ages 17~24. Due to lack of funding for research by the NIMH or any institution I did this work to guarantee the safe outcomes for all our children. FINDINGS: At least 74 of these 200 youth relapsed mildly between ages 17 to 24 with OCD, mental health and neurological issues, or various pans-like issues when re-exposed to strep or other acute infectious episodes (particularly mono, covid, pneumonia, etc). These youth healed quite quickly through quick treatment with antibiotics or IVIG (one or two doses). Two discoveries: 50% do, in fact, appear to "outgrow PANDAS"; and, 50% do not because this is likely an innate, genetically based immune response (as consortium findings also indicate). According to strep experts this is typical with Rheumatic Fever and Sydenham Chorea disease models. Three young men with extremely lengthy strep histories (over 20 infections by age 10) - had the most severe relapses and require encephalitis treatment to remain stable. My goal is to continue prove BOTH scientifically and clinically to hesitant-to-treat doctors and researchers that early childhood treatment to arrest the majority of psychological and neurological symptoms is paramount in order to secure a less intense inflammatory onset in young adulthood. With upcoming 2022 research, we have the ability to create diagnostic testing & focused medications."
As executive director, Diana has driven the growth of awareness through the organization and support of national and international conferences (beginning in 2011 in California) to the latest 2022 collaboration with Northwell Health of NYC (Chaired by Dr. Souhel Najjar, Chief of Neurology, acclaimed worldwide for his work with autoimmune encephalitis as detailed in book and movie Brain on Fire) Understanding the Spectrum of Childhood Encephalitis including PANDAS/PANS (Northwell 2022). In 2018, the widely publicized international conference Common Threads Among Post Infectious Autoimmune Diseases of the Brain (Columbia Univ. 2018) was attended by 800 persons and received national media attention (Dateline, NBC News). Building community is the driving force of PN leadership in the field. PN will continue to lead in the expansion of interdisciplinary dialogue and partnerships with medical associations and nonprofit organizations worldwide.
Diana’s long-term goal is to wipe out the devastation of encephalitic illnesses like PANDAS/PANS, autoimmune encephalitis and Sydenham chorea and tie our community’s cutting-edge research into the growing revelations surrounding the crosstalk of the immune system and the brain.