Register Now: Brown Univ. 2 Day PANDAS Conference

http://brown.edu/academics/medical/sites/brown.edu.academics.medical/themes/ursa-medicina/img/alpert-medical-school.pngOn March 14-15, Warren Alpert Medical School of Brown University will host the PANS, PANDAS, and Acute-Onset Neuropsychiatric Syndrome conference in Providence, Rhode Island!

This will be a two day event. Day 1 will be a medical conference offering CME credits. Day 2 will be a parent session with speakers. Please note that Day 1 is at Warren Alpert Medical School of Brown University and Day 2 is at the Marriott Providence. See below for details.


DAY ONE

Day one of the Brown University PANS, PANDAS, and Acute-Onset Neuropsychiatric Syndrome conference, on March 14th, will be a medical oriented conference. The impressive list of speakers will be eligible for CME credits as designated on the event flier. PANDAS Network is proud to help fund this event. Registration is NOW OPEN!

Day one of the Registration Information
Register online: https://apps.biomed.brown.edu/cme_registration.
Conference registration fee includes: Breakfast, breaks, lunch, access to an online syllabus, and complimentary parking.

Registration Fees
$155.00 Physicians
$95.00 Other Healthcare Providers and
Interested Community Members

Conference Location
Warren Alpert Medical School of Brown University
222 Richmond Street | Providence, RI 02912

To view the flier for DAY ONE, click here.

To REGISTER for DAY ONE, click here.
Please note you must register separately for day one and day two.


DAY TWO

Day two of the Brown University conference, on March 15, will be parent focused. The speaker panel from day one  will be available for questions and answers. Registration is NOW OPEN!

Day two of the Registration Information
Register online: https://apps.biomed.brown.edu/cme_registration.

Registration Fees
$50.00 One Family Member/Individual
$25.00 Additional Family Members

Conference Location
The Providence Marriott
1 Orms Street, Providence, RI 02903

To view the flier for DAY TWO, click here.

To REGISTER for DAY TWO, click here.
Please note you must register separately for day one and day two.

 

Thank you to Dr. Louise Kiessling for making this event happen. Your commitment to PANDAS and PANS children is remarkable!

 

 

Massachusetts Bill Needs Co-Sponsors! Your Voice Needs to Heard!

An Act relative to insurance coverage for PANDAS/PANS-Docket Number: HD 343 has been refiled by Representative John W. Scibak for 2015-2016 Legislative Session, and it is need of co-sponsors by Friday, January 30th!

HOW YOU CAN TAKE ACTION AND HELP

Phone FeaturedThe deadline for co-sponsoring this Bill is Friday, January 30th. Please take action TODAY and contact MA Legislators! Anyone (regardless of what state you live in), can contact MA Legislators to request support for the Bill, but we especially need MASSACHUSETTS RESIDENTS to take action. MA residents are their constituents and they are committed to representing you!

Phone calls are the most powerful tool. Ask to speak to the Legislative Director or the staffer that handles health-care related issues. If you are interested in having your friends, family, or colleagues write a quick email to their local representative, feel free to use/tweak the below template letter.

Massachusetts Legislature contact information can be found at: https://malegislature.gov/People/Search. A list of who is already signed on can be found at the bottom of this page

Please call Legislators to thank them for their support, but more importantly make sure you call the other representatives that have not yet signed onto the Bill. While we have been told that there is no direct correlation between co-sponsor numbers and the final disposition of a bill, every additional legislator that signs on is one more informed politician that will help us to build the momentum to put the control of our children’s medical treatments back in the hands of our dedicated PANDAS/PANS doctors and out of the reach of insurance companies.

EXAMPLE LETTER:

Docket Number: HD 343: An Act relative to insurance coverage for PANDAS/PANS

I would greatly appreciate your co-sponsorship of this important bill. By co-sponsoring this bill you will help children and their families struggling with this disorder by providing them with the opportunity to pursue the therapeutic recommendations of their doctors. Currently, many of these children are denied access to IVIg (Intravenous Immune Globulin) and other therapies by insurance companies more concerned with bottom-line profits than providing doctor recommended therapies. Sadly, this creates a situation in which families are forced to choose between their children’s health and financial ruin.

According to the National Institutes for Mental Health

“PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children and adolescents who have Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following strep infections such as “Strep throat” and Scarlet Fever.”

Recent research at NIMH has led to an expansion of the original PANDAS criteria and the subsequent use of the term PANS:

“PANS is a newer term used to describe the larger class of acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections. “

If you would like more information regarding these disorders, please visit the National Institute for Mental Health’s (NIMH) website at

http://intramural.nimh.nih.gov/pdn/web.htm

Thank you for supporting this important piece of legislation.

Sincerely,

 


WHO TO CONTACT

Due to the success of this Bill during the 2014 legislative session, it is guaranteed a CHIA (Center for Health Information Analysis) review. This is a HUGE hurdle for any insurance mandate. We need your help contacting Legislators and motivating them to sign on and support Docket Number: HD 343: An Act relative to insurance coverage for PANDAS/PANS by Friday, January 30th!

CURRENTLY SIGNED ON:
Rep. Josh Cutler
Rep. Carolyn Dykema
Rep. Angelo Puppolo
Rep. Peter Kocot
Rep. James Dwyer

PAST SPONSORS WHO HAVE YET TO SIGN ON FOR 2014-2015:
Rep. Tom Calter (12th Plymouth-Kingston, Plymouth, Plympton, Duxbury, Halifax, and Middleborough)
Rep. James Cantwell (4th Plymouth-Marshfield and Scituate)
Rep. James Murphy (4th Norfolk-Hingham and Weymouth)
Rep. Ellen Story (3rd Hampshire-Amherst, Granby, and Pelham)
Rep. Walter Timilty (7th Norfolk-Milton and Randolph)
Rep. John Lawn (10th Middlesex-Newton, Waltham, and Watertown)
Rep. Marjorie Decker (25th Middlesex-(Cambridge)
Sen. Karen Spilka (2nd Middlesex and Norfolk-Ashland, Framingham, Holliston, Hopkinton, Natick, Franklin, and Medway)
Sen. Sal DiDominico (Middlesex and Suffolk-(Cambridge, Everett, Boston, and Chelsea)
Sen. Stan Rosenberg (Hampshire, Franklin, and Worcester Counties)

SUCCESSORS THAT STILL NEED TO SIGN ON:
We’ve also lost 3 co-sponsors due to changes in the Legislature. Please call to urge their successors to also sign on to the bill.
Rep. John Keenan (7th Essex-Salem) replaced by Rep. Paul Tucker
Rep. Steve Walsh (11th Essex-Lynn and Nahant) replaced by Rep. Brendan Crighton
Rep. Rhonda Nyman (5th Plymouth-Hanover, Norwell, and Rockland) replaced by Rep. David DeCoste

 

Thank you for your commitment to helping children with PANDAS and PANS! A special thank you to Heather, Jacob, and Rep. John W. Scibak for once again spearheading this effort!

CT Bill for Insurance Coverage Needs Your Help!

cga logo

CT Senate Bill 15: An Act Requiring Health Insurance Coverage For Pediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal Infections needs your help with BOTH WRITTEN AND VERBAL TESTIMONIES!

CT RESIDENTS: Testimonies are needed by Monday, January 26 from CT residents to explain WHY treatment is needed and WHY insurance needs to cover treatment for PANDAS. We also need parents to take part in the PUBLIC HEARING on January 27. See below for details.


BE HEARD…SUBMIT A TESTIMONY BY 1/26

Be your child’s voice! CT residents, please share how your family has been impacted by PANDAS/PANS. Why is treatment so important? This must be submitted by 1/26/2015!

Girl FeaturedMotivate legislators to pass SB 15 by explaining how it would positively impact their constituents. Please have your testimony electronically submitted by noon on Monday 1/26 to [email protected]. They will submit all testimonies as a group. Or, contact your CT Legislators directly. Find him/her at: http://www.cga.ct.gov/asp/menu/cgafindleg.asp.

Suggested Guideline:

CT General Assembly
Insurance & Real Estate Committee Public Hearing
Testimony in Support of SB 15, AAC Health Insurance Coverage for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections.

By YOUR NAME HERE
Submitted DATE, 2015

Senator Crisco, Representative Megna and members of the Insurance & Real Estate Committee. My name is (YOUR NAME HERE), I am a (YOUR CONNECTION TO THIS ISSUE, PROFESSIONAL DEGREES, RESEARCH, etc.) to support of SB 15.

PLEASE EXPLAIN THE IMPACT/PROBLEM OF NOT HAVING HEALTH INSURANCE COVERAGE FOR PANDAS.

PLEASE EXPLAIN HOW INSURANCE COVERAGE WOULD BE BENEFICIAL.

YOU CAN ADD ANY ADDITIONAL SUGGESTIONS TO EXPAND ON THIS BILL.


SHOW SUPPORT…ATTEND THE PUBLIC HEARING

Be the face of families and children affected by PANDAS and PANS! Please attend the public hearing on 1/27/2015.

CT FeaturedThe Insurance and Real Estate Committee will hold a committee meeting on Tuesday, January 27, 2015 at 1:00 P.M. in Room 2D of the LOB.
Legislative Office Building (LOB)
300 Capitol Avenue, Hartford, CT

 

Please submit 30 copies of written testimony to Committee staff two hours prior to the start of the hearing in Room 2800 of the LOB. Speakers will be limited to three minutes of testimony. The Committee encourages you to submit a written statement and to condense oral testimony to a summary of that statement. All public hearing testimony, written and spoken, is public information. As such, it will be made available on the CGA website and indexed by internet search engines.

For detailed information about the hearing location, please visit: http://www.cga.ct.gov/asp/CGABulletin/Bulletin.asp.

A Guide for Reaching State Legislators and Testifying at Hearings in CT can be found at http://www.cga.ct.gov/olm/yourvoice.asp.

New Article: Treating the Brain & Body in Tandem

Go to the Globe and Mail homepage

The Globe and Mail discusses immune mediated mental illness in”Treating the brain and the immune system in tandem“.

Thank you to the O’Donnell family for allowing their story of diagnosis and recovery to be part of this article.

“I think we’re on the cusp of something that’s really huge and truly revolutionary in the way in which we … both diagnose people, as well as to make them better,” says Mady Hornig, associate professor of epidemiology at the Columbia University Medical Center, whose research focuses on the role of microbes and immune factors in neuropsychiatric illness.

Scientists are now recognizing that a host of external stimuli can disrupt the normal crosstalk between the brain and the immune system. Those stimuli can include stress, changes in the microbiome (the universe of microbes that live in our bodies), and certain viruses and bacteria.

It’s believed this disruption can affect the brain, and thereby behaviour. In PANDAS, it is suggested that streptococcal bacteria may mimic brain proteins, prompting the body to produce antibodies that mistakenly target the brain.

To read the full article, visit:
http://www.theglobeandmail.com/life/health-and-fitness/fitness/treating-the-brain-and-the-immune-system-in-tandem/article22491754/

JAMA: Tonsillectomy in PANDAS Treatment

JAMA Otolaryngology FeaturedJAMA, Journal of the American Medical Association, Otolaryngology–Head & Neck Surgery recently published the Case Report “The Role of Tonsillectomy in the Treatment of Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (PANDAS)” by Drs. Demesh, Virbalas, and Bent.

This Case Report “reported symptom improvement in comparison with treatment with antibiotics alone, including those with no response to antibiotics” and “four of the 9 had complete resolution (of PANDAS symptoms) after tonsillectomy”.

Only the abstract is available for free and can be read at:
http://archotol.jamanetwork.com/article.aspx?articleid=2089440


Currently, tonsillectomies are not a standard form of treatment for PANDAS children. There have been mixed reviews both in the medical community and within the parent community. Some have seen marked improvement with PANDAS symptoms and a lowering in the number of strep infections. Others have shared that the tonsillectomy did not help and symptoms temporarily worsened post surgery.

If a tonsillectomy is considered by an experienced ENT, parent feedback has suggested a treatment course of antibiotics prior to surgery and antibiotics post surgery. Requesting the tonsils be biopsied post surgery may also show whether strep, staph, or other bacteria was hiding in the tonsillar crypts.

Additional research on this topic is in development. Tonsil and Adenoid Analysis conducted by Drs. Beth Latimer, Neurology and Earl Harley, ENT (Georgetown University) will include a research paper on autoimmune cell findings found in some PANDAS/PANS children’s tissues. Expected publication in 2015.

Other Relevant Research:
PANDAS Syndrome: a new tonsillectomy indication? (2008)
Tonsillectomies and Adenoidectomies Do Not Prevent the Onset of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Group A Streptococcus (2013)

Laura’s Story of Hope & Strength

I am a mother of  a child that had “classic” PANDAS symptoms during a time when there was very little know of the Pediatric Autoimmune Neuropsychiatric Disorder Associated w/ Strep.  I am a registered nurse, mother of three (my youngest, Laura, having PANDAS) and I can vividly remember the perplexing  nursery school illness ( later diagnosed as strep) that “set her up” for the PANDAS onset Storm – we experienced approximately 6 months later.

Desperate, my research at the local library helped me find  “Is it “Just a PHASE?” by SWEDO & LEONARD – The chapter on PANDAS was validation to me that I WAS NOT CRAZY because by then I thought I was.  We went to pediatrician (again) and I begged/demanded a strep test on her slightly red throat which came back positive!  Her PANDAS onset was shortly after her 3rd birthday.  We dealt with PANDAS on and off throughout her elementary school years and even today it is very difficult to think of the dark days and difficult weeks this perplexing disorder robbed her and our family of.

Laura, is NOW 19 years old.

Hope Featured

I am happy to report, Laura is currently in her second year of college, living on campus, at a 4 year University (3 ½ hours away from home).  She experiencing and enjoying everything that any 19 year old college student would.  High school years were a blast, proms, socials, cheerleading, driver’s license, retreats and college visits.  She also dealt appropriately with the high school “Drama” that comes with being a teen.  I knew by middle school we were coming out of the woods as she began to enjoy sleepovers, going to birthday parties, even vacationing away from home with a friend.

Ten years prior, my only hopes and prayers were that she would be able to have a healthy life with peace of mind.

If this gives hope or strength to one parent – My objective has been met.

Sincerely,

Lynette S.

 

 

*photo provided by flickr creative commons by Stan

Students Help Make a Change

Students at Boon Elementary

Students at Boon Elementary

Students at Boon Elementary in Allen, Texas live their motto “It is NICE to be IMPORTANT but it is more IMPORTANT to be NICE!”

They worked together and raised $3,000 making a “change”. They generously donated $302 to PANDAS Network.

Everyone has the ability to make a difference. Students at Boon Elementary are a shining example of compassion and caring.

Thank you, Boon!

 

1 Day Fundraiser Raises $17,000 & PANDAS Film Sneak Peek

On December 31, those touched by PANDAS & PANS were asked to take 3 minutes of their year to donate $10 and raise awareness for PANDAS/PANS. If we raised up to $7500, the Burrow Family Foundation will match our donation dollar for dollar. Well, the community was up to the challenge and surpassed that goal!

THANK YOU!

Be sure to watch the sneak peek of Sorel’s upcoming documentary below, as featured on the ONE DAY, A WORLD OF DIFFERENCE for P.A.N.D.A.S. fundraising page.

My Kid is Not Crazy from Tim Sorel on Vimeo.

$56,000+ Raised For PANDAS Network & MGH PANDAS Clinic

Thank you to Massachusetts Pedal for PANDAS for raising an astounding $56,000 for PANDAS Network and Massachusetts General Hospital’s PANDAS Clinic!!!

The SoulCycle event was organized by PANDAS Network Board Member, Maggie Gold Seelig. Maggie and PANDAS Network are thrilled by this event’s incredible success.

Thank you to all of the event sponsors and to all of you for turning out and for lifting us up with your caring and commitment.