mminds.org/https-www-mmin…

In honor of #nedaweek beginning on February 24 we are excited to debut our first article in our upcoming series. Our goal is to make research more accessible to families in order to increase participation in research and allow families to understand the science behind the illness

CPIND can also cause a sudden onset of sleep disturbances such as insomnia, night terrors, and bed wetting #pandasawareness #mendingminds

Sudden onset of age inappropriate separation anxiety, most commonly from a parent or guardian, or more generalized anxiety are common symptoms #mendingminds

A goal of Mending Minds is to establish a biobank of samples to enable research. It is important to compare samples from children with various degrees of CPIND to healthy children to help elucidate disease mechanism

Another common symptom of CPIND is food restriction. This behavior can be due to fears including fear of vomiting, fear of contamination, orthorexia (when an individual has a fear of eating 'unhealthy' food), or anorexia (food restriction due to a fear of gaining weight)

The most common manifestation of CPIND symptoms is Obsessive Compulsive Disorder (OCD). A child's OCD can appear in many different forms including obsessional fears/phobias, repeated compulsive behaviors, and recurrent intrusive thoughts #mendingminds

Often children with CPIND present with acute onset of OCD and related symptoms. Therefore, CPIND should be considered for any acute onset of symptoms #mendingminds #pandaspans #ocd

A research goal supported by Mending Minds is the establishment of biomarkers to enable more accurate diagnosis. A biomarker is a measurable indicator of an underlying biological process. Establishing biomarkers for CPIND will dramatically aid diagnosis and monitoring of it.

Mending Minds is partnering with researchers around the world including at MGH, Stanford, MIT, Children's Hospital, The University of Gothenburg, and others. By collaborating, we hope to develop a better understanding of these disorders to provide better diagnosis and treatment.

For those who missed Channel 7 News last night, a video of the PANDAS segment that Kimberly Bookman ran with some Mending Minds families is linked here mminds.org/news

When a child in each of these #Wellesley families had a sudden & devastating behavior change, the parents went to doctors for help. They both now know their kids suffer from a rare disorder & are working to figure out how to stop it & how best to treat it. Watch #7news @ 9 & 10

If you would like to help those suffering with the rare disorder #PANDAS that #7news reported on tonight ... you can make a donation to mminds.org and help doctors/researchers understand who gets this, why and how to stop it. Stacey Detrick-Lerner NE PANS PANDAS Assoc

Tune in to Chanel 7 Boston at 9pm or 10pm to see an interview with a few of Mending Minds Foundation founders #mendingminds #pandaspans #awareness

Call to action! On Tuesday, July 9, 2019, at the Gardner Auditorium of the State House in Massachusetts, House Bill 920 and Senate Bill 613 regarding 'an act relative to PANS/PANDAS coverage' will be decided. For more info, see the following: bit.ly/2XnrypL

Mending Mind’s priorities include the establishment of biomarkers to help physicians easily diagnose Childhood Post-Infectious Neuroimmune Disorders (CPIND), gain uniform treatment consensus, and disseminate information and research findings worldwide. bit.ly/2YbjlRC

Introducing Mending Minds Foundation, a group of clinicians, scientists and parents whose aim is to cure Childhood Post-Infectious Neuroimmune Disorders like PANS and PANDAS by advancing excellence in diagnosis, care and research. bit.ly/2YbjlRC

Amanda Peel Crowley's testimony about Childhood Post-Infectious Neuroimmune Disorders can now be viewed below. Thank you to Chairwoman Delauro and Ranking Member Cole for your thoughtful comments regarding the need to spread awareness.
youtu.be/HqLgwEyrsG0

You're not too late to tune in. Testimony regarding Childhood Post-Infectious Neuroimmune Disorders should begin momentarily. #CPIND
youtube.com/watch?v=KGRHg-…

Check out the testimony at 3:25 today using the LIVESTREAM youtu.be/KGRHg-840KE?fb… #CPIND #PANDASPANS