Greetings,
During October, we are excited to join forces with PANS Advocacy groups across the globe. We wish we could be with NEPANS walking in Massachusetts, but we sent flyers and toolkits. NWPPN, SEPPA, Inflamed Brain Alliance in Canada, and many more groups organized walks nationwide. We look forward to joining The Alex Manfull Fund and other northeastern organizations at the Head of the Charles later this month. This week we recorded Dr. Swedo's introduction for several Associazione Genitori PANS PANDAS BGE projects. We continue to provide school in-services across the country and will speak at a pediatric therapy center in a week. |
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PANS/PANDAS Awareness Action Week! We can expand our reach, advocating for and educating about PANS PANDAS. But we need your help! Please join us every day of the week leading up to October 9. We have created an awareness action calendar. - On October 3, we ask you to change your frame on Facebook and Instagram. Instructions on using Twibbonize, Canva, or a photo editing app are available on our PP Awareness Day page.
- On October 4, ensure you register for our upcoming webinar; we can never stop learning. Dr. Antoine will speak to us on Toxins and the Immune System in PANS & PANDAS. He not only brings years of treating PANS but also, he is a PANS parent. Make sure to ask someone to also register!
- On October 5, our focus will be sharing our toolkits. Has a provider dismissed your or your child's symptoms? We suggest you drop off a copy of our Resources for Clinicians toolkit. Or do you know a feeding therapist who should know more about restrictive eating and PANS and would benefit from reading our PANS & Disordered Eating toolkit? Perhaps the pediatrician said your child couldn't have PANDAS because your kiddo didn't have a current case of strep throat? Then, our Professional Advisory Board's toolkit, Testing & Antibiotic Usage for GAS in PANS & PANDAS, is also a fantastic choice to share.
- On October 6, we hope you will educate schools. Share the Comprehensive Educator Toolkit or some of the one-page school flyers with teachers and staff. Don't forget to ask them to set up a PANS PANDAS in-service training to learn more.
- On October 7, we urge you share your PANS journey. Take the day to sit down and write and submit your PANS story to ASPIRE to highlight during the year. During the day, we will share previously submitted stories, so be sure to read them. We can learn a lot from them; they remind us that we are not alone in the struggle.
- On October 8, we ask you to share two videos. The short infographic Overview of PANS/PANDAS has been shared many times, but it still leads many people to our website. The second video we recently recorded for Associazione Genitori PANS PANDAS BGE. Dr. Susan Swedo discusses The importance of prompt recognition and appropriate treatment of PANS/PANDAS and why they are critical to healing children and preventing a lifetime of suffering.
- And, of course, last but not least, October 9 is PANS PANDAS Awareness Day. We ask you to join us in taking over the internet by sharing our posts on Facebook, Instagram and other social media outlets. Let's bust the Facebook algorithm and push PANS awareness into everybody's feeds. So make sure to click heart/wow, share the post, and comment.
Remember, advocacy and education happen all year long; we hope you continue to join us in spreading information about this devastating but treatable disorder across the globe. Let's make a significant impact this week. Let's climb mountains together to shorten the time between the onset of symptoms and the start of appropriate treatment. xo xo Gabriella True, Board President
#PANSPANDASAwareness |
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PANS/PANDAS Education
Toxins and the Immune System in PANS & PANDAS Speaker: Scott Antoine, DO, FACEP, ABOIM, IFMCP Date: Friday, October 6th, at 10:00 Eastern Register and Learn More: https://aspire.care/videos/webinar-scott-antoine-do-toxins-and-the-immune-system-in-pans-and-pandas Millions of children get infections like Strep and Mycoplasma every year. Why do some children develop PANS and PANDAS? What is different about them? Although there are genetic predispositions involved in PANS and PANDAS, there is one environmental factor that we have seen in the hundreds of patients we have treated with these disorders. That factor is exposure to environmental toxins and toxicants. These chemicals induce immune dysregulation which involves both autoimmunity (overactivation) and Immune deficiency (underactivity). The most common immune dysregulator (found in 100% of the patients with PANS we have tested) is mycotoxins from mold exposure. The medical literature indicates that mycotoxins, in addition to being direct poisons in the brain, cause immune dysregulation. Correcting the immune dysregulation and removing the toxin exposure in the patient and their environment can lead to long-term recovery. PANS does not have to be a permanent diagnosis. |
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