An Urgent Call for Integrative Neuroimmune Clinics
Lynn Willliams 0

An Urgent Call for Integrative Neuroimmune Clinics

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Dear Secretary Kennedy,

I am writing to you as a mother who is working to request your assistance in helping families, like my own in navigating severe neuroinflammatory disorders. If you are not already aware, there are tens, if not hundreds of thousands of parents and caregivers from across this country desperately fighting for our children who are suffering from severe neuroinflammatory disorders such as PANS, PANDAS, Autoimmune Encephalitis, and other post-infectious neuroimmune conditions. These illnesses are truly stealing our children’s lives, families are in crisis, and the medical system is failing us at every level. We greatly need your help, and we need it now.

Children are enduring unimaginable neurological attacks caused by immune dysfunction and inflammation in the brain, worsening since COVID. During these episodes, children experience sudden and extreme symptoms including but not limited to terror, rage, intrusive thoughts, OCD, cognitive shutdown, motor disturbances, sensory overwhelm, depression, panic, and uncontrollable impulses. These crises are a medical cause, not psychiatric and the correct resources to help them do not seem to exist as they should.

These children are being funneled into psychiatric wards that are unequipped to treat the underlying autoimmune and neuroinflammatory causes of their symptoms. Instead of receiving medical intervention, they are often restrained, sedated, or dismissed, while the inflammatory process attacking their brains remains untreated. This is neuroinflammation and when these conditions are addressed medically, symptoms frequently improve or resolve, because the root cause is an immune-driven neurological illness, not a primary psychiatric disorder.

I understand and appreciate that you have spent your career advocating for children harmed by systemic failures and ignored health crises and am confident that you understand how politically inconvenient illnesses become invisible suffering. However, these kids have become invisible, but parents are now speaking loudly. If we don’t, our children and future generations will continue to bear the devasting consequences of that silence, simply stated, it is not okay and we cannot accept this now, let alone into the future.

We need a national response built around integrative medical care, not psychiatric placement.

Across the United States, families are begging for help in emergency rooms where physicians have never been trained to recognize or treat neuroinflammatory disorders. Children are being turned away and denied evidence based medical interventions such as antibiotics, steroids, immunotherapy, IVIG, Rituxan, and Plasmapheresis that can dramatically reduce and often reverse their symptoms. Parents are repeatedly dismissed by healthcare professionals who overlook the underlying immune dysfunction and mistakenly interpret these crises as psychiatric in nature.

While a small number of physicians understand these neuroimmune conditions and are attempting to help these children, access to them is severely limited, and treatment costs can easily reach tens of thousands of dollars or more in out-of-pocket costs. This has created an impossible barrier for most families and is unattainable for many as they attempt to move forward in establishing correct, beneficial care plans for their child. As a result, countless children have been left to suffer without appropriate care and the impact this leaves on families is heartbreaking. Often times, delays caused by trial-and-error approaches with less effective treatments lead to worsening illness, ultimately requiring the very interventions families cannot afford.

Compounding the crisis, once these children become adults, access to treatment becomes even more restricted. We urgently need a coordinated system of care that supports both pediatric and adult patients with neuroimmune and autoimmune encephalitis-related conditions. With your support I believe positive progress can be made and some of these barriers regarding access to care can be broken.

PANDAS was first identified and published by Dr. Susan Swedo at the National Institute of Mental Health in 1998, yet it was not nationally recognized until 2018, when October 9th was designated as National PANDAS Awareness Day. It took twenty years for this devastating neuroimmune condition to gain formal acknowledgment. In the meantime, parents have been left to shoulder the burden alone, trying to treat these complex medical conditions themselves because they are unaware of the cause or cannot afford the essential, often life-changing therapies their children need. They rely heavily on one another for support, guidance, and shared lived experience, because the healthcare system has not met their children’s basic medical needs. Our families cannot wait another twenty years for appropriate care, research funding, and national action to raise awareness and understanding for these children.

A growing body of peer-reviewed research confirms that immune-modulating treatments can dramatically change outcomes for children and young adults with these disorders. Studies of IVIG in PANS/PANDAS show clinically meaningful reductions in OCD, cognitive improvement, behavioral stabilization, and symptom reversal. Research in autoimmune encephalitis demonstrates that treatments such as IVIG and rituximab can significantly improve neurological function, reduce relapses, and restore quality of life—especially when provided early and at adequate dosage. These are not experimental therapies; they are well-documented medical interventions with decades of clinical data supporting their use in neuroimmune disease.

Here is what we urgently need your leadership on:

  1. Public acknowledgment that neuroinflammatory disorders (PANS/PANDAS/AE) are a national pediatric crisis.
  2. Your voice would bring immediate national attention.
  3. The creation of specialized inpatient and outpatient integrative neuroimmune clinics—NOT psychiatric wards.
  4. These clinics must include:
    • neuroimmunology
    • neurology
    • immunology
    • infectious disease
    • functional and integrative medicine
    • nutritionists
    • psychiatry only as supportive, not primary care.

These children require medical stabilization and treatment of inflammation, infection, and immune dysfunction, not containment which often induces trauma.

  1. National framework requiring accurate diagnosis and standardized medical treatment, including IVIG, antibiotics, steroids, anti-inflammatory protocols, plasmapheresis, and immunomodulators.
  2. Insurance coverage reform to stop families from going bankrupt paying out-of-pocket for lifesaving medical care.
  3. Clinical training for pediatricians, ER doctors, neurologists, and mental health professionals so no child is ever mislabeled as “psychiatric” again when their brain is under attack.
  4. Legal and federal protections for families whose children are denied appropriate care or threatened with psychiatric institutionalization.

There needs to be a clear understanding that children with neuroinflammation are NOT psychiatric cases—they are medical emergencies. Psych wards retraumatize them, worsen symptoms, and block access to immune-based treatment. There is no benefit to this type of care, they are not receiving the comprehensive care that is needed for them to have an opportunity to thrive.

These kids need medical units—neuroimmune inpatient units—where their whole-body inflammation, infection triggers, immune dysfunction, and neurological health can be treated with an integrative medical model.

Frankly, our families are exhausted, and we cannot make positive progress battling this alone without national support. Many of us have lost jobs, savings, relationships, and years of our children’s lives trying to keep them safe. Some children have been institutionalized, others have passed on, and other are losing their future because there is nowhere for them to go for proper medical care.

My son is a brilliant, compassionate young man who wants a future. He deserves one. Every single one of these children deserves a bright future and I need your support to make those things possible.

We need your voice to stand up for them.
We need national leadership.
We need integrative neuroimmune care.
And we need it now.

Other parents and I would welcome the opportunity to share our stories and are ready to provide documentation and/or connect you with clinicians on the front lines of this crisis. Attached to my letter, you and your team will find key resources below for consideration and review.

I appreciate your courage, compassion, unwavering dedication to children’s health and look forward to being a partner as we tackle these disorders for the many American families struggling like my own.

With urgency, hope, and prayer,

Lynn Williams

Mother and Advocate
llsw47@icloud.com

(443) 404 -1171

Selected Resources for Immediate Review

Educational & Advocacy Organizations

Medical Guidelines & Research

Documentaries & Public Awareness Media

Peer Support, Family Networks & Data Resources

Clinician & Medical Center Resources

Key Scientific Articles

Dr. M. Elizabeth Latimer – Public Talks & Contributions

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