new england pans/pandas association · pandas awareness day - october 9, 2015 help spread awareness...

October 8, 2015

New England PANS/PANDAS Association

In This Issue*PANDAS Awareness Day

*PANS Stories

*Moleculera Video

*Documentary Trailer

*Dr. Monarch Clinic

Contact Us

NEPANSPO Box 1315

Duxbury, MA 02231

WebsiteNE PANS/PANDAS Assoc.

Email

PANDAS Awareness Day - October 9, 2015

Help Spread Awareness & Understanding!

AWARENESS. UNDERSTANDING. HOPE. HEALING. PROGRESS.

These are the words that come to mind when we think about whatPANDAS Awareness day means and what we want to accomplish todayand in the future. Every effort counts. Every step towards progresscounts. Many exciting endeavors are underway and more on the horizon.As a community, we will make PROGRESS towards continued andgreater AWARENESS and UNDERSTANDING about PANS/PANDAS,which will foster more opportunities for HEALING our kids and provideHOPE for our families. Awareness happens one step at a time: onefamily at a time, one doctor at a time, one school nurse at a time, oneteacher at time, one legislator at a time. Please help us make morepeople aware of PANS/PANDAS by sharing the newsletter or the contentherein.

We would like to share two short stories highlighting how every effortcounts in spreading awareness one person at a time.

View as a webpage http://campaign.r20.constantcontact.com/render?ca=c3b13e99-...

[email protected]

Awareness Posters

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PANS @ School

NEPANSThe New EnglandPANS/PANDAS Association isa group of parent volunteersfrom various states acrossthe New England focused onraising awareness of PediatricAutoimmuneNeuropsychiatric DisorderAssociated with StreptococcalInfections (PANDAS), also

NEPANS posted information one Facebook about a localsupport group meeting in Wilton, CT, which was in turnshared on a personal page where it was seen by a ladywho knows nothing about PANS. Fast forward a few days,this lady is at a school function where parents weretalking about how strep is going around already and inthe midst of this conversation a Dad says that his sonjust started having tics out of nowhere. This lady said,"you know I read something about how strep and tics arerelated, let me find it and email you" which she did andhe showed up at the local support group meeting thevery next morning looking for help.

A pediatrician unequivocally told a family their child didn'thave PANS. The family took the child to another doctorwho disagreed with that assessment, then diagnosed himwith PANS, treated appropriately and the child healed.The family went back to the original pediatrician to showthe transformation along with the labs and treatmentprotocol used. The pediatrician apologized for not takingtheir concerns seriously and promised to be moreopen-minded, read the research thoroughly, consult withother doctors about PANS/ PANDAS. Since then thatdoctor continues to uphold that promise and now referspatients he suspects may have PANS to a local specialist.

There is HOPE for PROGRESS!

Wishing you Health, Hope and Awareness from yourPANS/PANDAS partners at NEPANS

For More Information on PANDAS Awareness Day

PANS Stories .... Every Family Has A Story

Stories From Families in Our Community

We are thrilled announce thelaunch of a new program

PANS Stories.... Every Family Has A Story

No one can tell the stories of what it islike to live with PANS/PANDAS like thosewho have lived it. The list of symptoms


known as PediatricAcute-onset NeuropsychiatricSyndrome (P.A.N.S.).

Our mission is simple:* To raise awareness ofPANS/PANDAS in ourcommunity and beyond* To support the medicalcommunity in their mission toheal our children sufferingfrom PANS/PANDAS* To look for ways to expandthe medical care available* To create opportunities toassist families searching forsolutions

Board Members:Margaret Chapman, MicheleDanubio, Melissa Glynn-Hyman, Lisa Grisolia, LisaHart, Emily Klein, ElizabethLaForest, Tiffani Maxwell,Robin McCune, Kim Panton,Beata Takahashi, LauraTedeschi, Gabriella True,Jennifer Whelan, JenniferVitelli

PANS/PANDAS

What isPANS/PANDAS?

P.A.N.D.A.S (Pediatric

and descriptions of various treatment protocols does not bring thecondition to life. The family telling their individual story is whatilluminates the day-to-day struggles and triumphs our children andfamilies experience. The aim of sharing these stories is to help familiesnot feel so alone in their struggles, to let them know there is a familyout there just like them, and ultimately to let them know there is hope.For More Information

New Video from Moleculera

Cunningham Panel Overview

A new animated video from Moleculera labs provides an easy tounderstand introduction describing the Cunnningham Panel of tests. Itincludes information on how physicians can use the results to help indiagnosing patients. For More Information

PANDAS Documentary Trailer

"My Kid is NOT Crazy" a film by Tim Sorel


Autoimmune NeuropsychiatricDisorders Associated with

Streptococcal Infections) andP.A.N.S. (Pediatric Acute-onset

Neuropsychiatric Syndrome) areterms used to describe asubset of children andadolescents who experiencean encephalitic-like onset ofneuropsychiatric symptomsfollowing an infection such asStrep, Pneumonia, andMononucleosis.

In simple terms, antibodiescreated to fight the infectionbecome misdirected andattack a small area of thebrain known as the basalganglia. This autoimmunereaction results in an acuteonset of neuropsychiatricsymptoms that can include:separation anxiety, OCD, tics,age regression, sleepdifficulties, personalitychanges, urinary frequency,irritability, rage, sensorysensitivities, deterioration inlearning abilities andanorexia.

"[PANDAS] changes the way think about mental disorders actually forever."

- Dr. Madeleine Cunningham

We encourage everyone to watch and share the trailer to this upcomingdocumentary on PANDAS by documentarian Tim Sorel. In the trailer, wehear from parents, kids, leading doctors and researchers including Dr.Sue Swedo, Dr. Beth Latimer, Dr. Rosario Trifiletti and Dr. MadeleineCunningham. The viewer is immediately brought into the world of thesefamilies and their trials and tribulations, the many symptoms, theseverity of symptoms, the heartbreak, and touches on how important itis to correctly diagnose these children so they can be correctly treatedand ultimately healed but how hard it is to find real help. This film willhelp our community spread awareness and understanding well beyondour community.

Please share the trailer far and wide.

Major funding for this project comes University of Florida and throughseveral grants. The majority of the filming is complete. If you areinterested in donating to help cover post production costs, moreinformation is available on the movie trailer website. For More Information

Dr. Monarch Aims to Open Clinic in MA

Help Fund a PANS & Lyme Treatment & Recovery Center

There are so many good things to share this year on PANDASAwareness Day! When NEPANS first started almost 3 years ago wedreamed of having a full service clinic available in New England. We


are thrilled to announce that a clinic will soon open in Massachusetts.Dr. Elena Monarch, a neuropsychologist, is working very hard to opena PANDAS, PANS, Lyme clinic for both children and adults inCohasset, MA. But she needs our help. Dr. Monarch has five years ofexperience assisting in the care and treatment of these severeillnesses. Many families have to travel far and to multiple doctors to

reach experts who understand the complexity of these illnesses. Her dream is to have everything under oneroof. This would include an MD with an Integrative approach, a therapist (Dr. Monarch), nutritionists andother forms of integrative medicine. The key reason for the funding is to allow her to start the business withzero debt and put earnings back into the business. She wants to be able to give discounts to families whocannot afford care they desperately need, and she wants to hire an excellent staff. Dr. Monarch's ability tohelp families determine if anxiety, OCD, eating issues, etc, are related to infectious triggers is solid. She hasthe incredible depth of knowledge this community so desperately needs.

She is hoping to open the clinic as soon as possible so the PANDAS and Lyme communities can have easyaccess to care under one roof. Please consider supporting her heartfelt efforts. No donation is too small!Please visit NEPANS for link to Dr. Monarch's Fundraising Site. For More Information


new england pans/pandas association · pandas awareness day - october 9, 2015 help spread awareness...

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