Mending Minds Foundation

[Mending Minds Foundation @mendingminds_]

https://t.co/YKEfXoo0Dn

[Mending Minds Foundation @mendingminds_]

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

[Mending Minds Foundation @mendingminds_]

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

[Mending Minds Foundation @mendingminds_]

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

[Mending Minds Foundation @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

[Mending Minds Foundation @mendingminds_]

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)

[Mending Minds Foundation @mendingminds_]

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

[Mending Minds Foundation @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

[Mending Minds Foundation @mendingminds_]

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 Foundation @mendingminds_]

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.

[Mending Minds Foundation @mendingminds_]

For those who missed Channel 7 News last night, a video of the PANDAS segment that @KimberlyBookman ran with some Mending Minds families is linked here https://t.co/S45E1knBIU

[Kimberly Bookman @KimberlyBookman]

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

[Kimberly Bookman @KimberlyBookman]

If you would like to help those suffering with the rare disorder #PANDAS that #7news reported on tonight ... you can make a donation to https://t.co/pJgBEhGn2E and help doctors/researchers understand who gets this, why and how to stop it. @staceydlerner @NEPANSPANDAS

[Mending Minds Foundation @mendingminds_]

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

[Mending Minds Foundation @mendingminds_]

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: https://t.co/gmh5SKzByq

[Mending Minds Foundation @mendingminds_]

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. https://t.co/7Y6An9op3F

[Mending Minds Foundation @mendingminds_]

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. https://t.co/7Y6An9op3F

[Mending Minds Foundation @mendingminds_]

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.
https://t.co/mdrvcXGSAp

[Mending Minds Foundation @mendingminds_]

You're not too late to tune in. Testimony regarding Childhood Post-Infectious Neuroimmune Disorders should begin momentarily. #CPIND
https://t.co/Oaf6GF5qRC

[Mending Minds Foundation @mendingminds_]

@KimberlyBookman Amanda Peel Crowley of Mending Minds Foundation will testify to the Labor, Health & Human Services Committee about NIH appropriations for CPIND research after 3:25 today. #CPIND #PANDASPANS
https://t.co/Oaf6GF5qRC