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awareness products can be found at our online store on
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*IMPORTANT NEWS*
PANS/PANDAS FACT SHEET
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P
ANDAS Network has a new fact sheet that is good to give to doctors, schools, the media. We have it hosted in a new spot on our website that highlights news articles inspired by PANDAS-PANS Families.
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PANDAS Network Newsletter
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Awareness building begins one family at a time. See a VIDEO and TWO STORIES of triumph over adversity. Below learn about how the Washington DC's NIMH is helping build awareness.
Diana Pohlman, Exec. Dir., of Pnetwork, was able to attend for the first time the NIMH Outreach & National Partners meeting. At this event, national mental health nonprofits meet to hear about latest research trends. Director of the NIMH, Tom Insel spoke out about the lack of care for those diagnosed with mental illness and how important it is to
prove the physiological/immunological
reasons for mental illness. We will report more on the lecture next week.
BUT THE GOOD NEWS! Is PANDAS and its treatment was clearly a RAY OF HOPE. The national partners will for the first time link to PANDAS on their websites. They knew nothing of PANDAS or PANS. Dr. Beth Latimer and Diana gave a presentation to the 70 nonprofits and a AAP representative -- the largest contingent was from NAMI -- and the audience was stunned. Our videos, our stories, moved every person. One researcher interrupted to talk to speak on the microphone "This is my niece you're describing. We were so lost. Now I see she must have PANDAS." The audience was moved deeply. This week the NIMH Outreach Committee sent links to the NIMH's site on PANDAS, conference videos, PPN website, JCAP articles and more. PANDAS Network will now connect via email to each nonprofit and send them a link to our site and latest fact sheet.
PANDAS is not, we know, permanent mental illness but it displays this way and bringing awareness through these groups may begin to help us.
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Do Walk-a-Thon &
Educate a County
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Chuck and Renee Lumio, parents of a young boy age 4, have launched a HUGE campaign to bring awareness. Chuck, a teacher at Maple Point Middle School in Langhorne, PA . He developed an awareness program for the 8th Grade student body. As he spoke, it moved many to tears. Now, the 8th grade children and their families will have a walk in support of PANDAS Awareness on Oct 9th. They are also selling bracelets to raise money for the PANDAS Network and its research partners. Check out the schools web page and video
Renee, an RN, has worked hard on a school nurse training for dozens of school nurses in her county beginning next week.
THANK YOU MAPLE POINT MIDDLE SCHOOL.... Wow!
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PANDAS Misdiagnosis Reversed!
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A 9 year old North Carolina boy with PANDAS was handcuffed by police due to his intense onset of anxieties and fears. Grandmother, Kim Richardson, spent two years advocating for NC legislation that
outlawed handcuffing of children under 10 years of age.
The bill was passed unanimously and signed into law by the Governor in May. The story does not explain the happy medical side which is, the boy is doing very well now with antibiotic therapy and tonsillectomy. He enjoys school, gets good grades, sleeps well on his own, and much much more. Amazing what a little awareness can do............
The PANDAS Italy Como Conference was
a great success. Conference planner,
Loretta Falcone, is featured here explaining
to Italian national media that her son was misdiagnosed with schizophrenia as were other children in her area. You can download Google Translate App to read this in English :)
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Thank you to those who can help this year. This is a marathon and even a word of encouragement MATTERS. Let's reach people one by one.
Please keep us updated on events
The PANDAS Network Team
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