An Urgent Call for Integrative Neuroimmune Clinics

Please help these unfortunate souls that can’t advocate for themselves whether they are children or adults. They need a voice to represent them and advocate for themselves. It’s urgent that they receive proper medical care regardless of what insurance claims is helpful or not for the patient. Families are torn as how to receive proper medical treatment for their charges. Thank you

Happy to share our story.

Please help these children.

Please help us! Our children and families are suffering. This is a crisis and needs attention.

Please bring down the house on PANS/PANDAS. Our kids are sick and the system is broken and corrupt. So many of us are suffering and going bankrupt and the system...wants to keep adding insult after insult. Too exhausted to provide a polished comment...fighting 24/7 fir 22 years and lost everything....

I am a parent of a child diagnosed with PANDAS. There is a number of doctors in the DC area who have studied neuro immune diseases and treat our children.

For my 4 year old son, and all other families out there struggling with neuro inflammatory symptoms

I am a nurse practitioner and am just getting into treating this and my special interest began with my daughter who struggled and it went undiagnosed for four years. It is tragic and so sad. It needs to be more widely addressed

For my son, struggling with PANS/PANDAS since March 2024.

This is a very accurate and well thought out request. We still have hospitals that deny the existence of these disorders. We have children placed in child protective services because drs won't listen to the parents and have no understanding of PANS and PANDAS.

3 sons with PANS living in Ohio and on dose after dose of antibiotic to control with no ability to get them the IVIG they need.

For my son (9yo) who has PANS from a Lyme Disease coinfection, Babesia. Children’s hospitals must ID and treat PANS/Pandas.

Change!

I am an RN for almost two decades. My son presented with PANDAS symptoms in 2022 after an acute strep infection. After frequent illnesses including a hospitalization with mycoplasma pneumonia, he slowly began healing after we remediated for mold and added natural treatment modalities. I would love to help with any future research to prevent others from living this nightmare.

We need this desperately

Please lend your support to provide more awareness and help for children with neuroinflamatory disorders.

Parent of a 13 year old who has been suffering and fighting for diagnosis and treatments for over 3 years.

This is a very deserving cause. Many children suffer needlessly without timely and proper diagnosis. This is time they and their families never get back. We are still dealing with the effects of this disorder 6 years after diagnosis. Had my son been diagnosed earlier and correctly he wouldn't have had the delay in correct treatment and it wouldn't have gotten as severe as it did. It is IMPERATIVE that things change so that other families do not have to suffer as those in the past. THIS is the time to make the change. He is recovering because we just happened to connect with someone who was dealing with a similar situation and received a referral to a knowledgeable physician but this is something that can never be forgotten. We will be traumatized by this forever-

My daughter’s life has been turned upside down by PANS, and getting the care she needs has been an exhausting battle. Families like ours are fighting every day for help, understanding, and treatment options. Please stand with us and make a difference.

Dear Secretary Kennedy, please help this wonderful family. I know them as my neighbor. Good family and they desperately need help.