PANDAS Network .org Newsletter
PANDAS Network.org
NY Proclaims Oct 9th PANDAS
AWARENESS DAY, IVIG Study Closed
7/25/2013
In This Issue
NY Proclaims Awareness Day
Others Inspired to Create Awareness Around the Globe
NIMH IVIG Closed
Donate to Dr. Agalliu's Research
PANDAS/PANS Research Survey Reminder
PANDAS/PANS Parent Support Central
Important Links
 
 

Greetings!

Summer vacation may be in full swing, but the PANDAS/PANS community is not taking the summer off from creating awareness and moving things forward!

We are happy to be able to share great, motivating news. The first ever PANDAS/PITAND/PANS Awareness Days have been declared in New York and Illinois!!! There are also numerous others following suit in hopes of having the same recognition in their area.

This is on the heels of the enrollment completion of the NIMH IVIG study, which has been recruiting since 2011.

Things in the PANDAS/PANS community are optimistic and hopeful. Awareness is being created, research is being completed, and new research is in the works.

Keep working hard. Together, we are making a difference!
  
Sincerely,
Volunteers at PANDAS Network .org

NY Proclaims Oct 9th PANDAS/PITAND/PANS AWARENESS DAY and The Story Behind It
By Diana Pohlman
 
NY Proclamation Being Received
Assemblywoman Nicole Malliotakis, Brooklyn, Staten Island 
The State of New York has declared October 9th as PANDAS/PITAND/PANS Awareness Day and cites PANDAS Network .org as a parent advocacy group established in 2009 to combat this disease.  This is the story of the Greek Orthodox community's love for a young man, Stefanos Mitsogiorgakis (age 16) and his mother,  Christine`s, tenacious persistence.

It began in 2008 when Stefanos, at the age of 12, came down with PANDAS onset after a recent strep infection.  He developed the sudden onset of OCD, tics, loss of math skills and hallucinations amongst other typical PANDAS symptoms.  Stefanos` case is particularly tragic because despite treatment with plasmaphoresus, IVIG and antibiotics, he would improve only to relapse again and with greater severity.  Christine said the doctors are not clear on the complicating factors but the Mayo Clinic recently discovered unusual and deep  infections in the tonsils that likely contributed his continued relapses.  The Mayo Clinic is currently continuing to work with the family and a treatment protocol.

This past April, Assemblywoman Nicole Malliotakis met Christine and Stefanos at her Greek Orthodox Church to bestow a Community Service Award on their priest for his contributions to Staten Island families after Hurricane Sandy.

Christine approached Assemblywoman Malliotakis on this day and asked if she would be willing to support a day of recognition for PANDAS.  It was known that Stefanos could not get proper treatment because the medical community had not adequately recognized this disease nor decided on treatment protocol.  Stefanos had lost valuable time and treatment opportunities. 

Assemblywoman Malliotakis acknowledged that her heart broke for Stefanos and wanted to help.  She had Christine provide information on PANDAS  - the White Paper on PANS, handouts from  PANDAS Network .org on overviews of the disorders and statistics and Stefanos' story of this disease.    Despite the ambiguity that continues in the medical community about autoimmune malfunction and PANDAS/PANS , Assemblywoman Malliotakis saw the truth in our struggles.....
NY Proclamation Group Photo
Eminence Archbishop Demetrios, Stefanos Mitsogiorgakis, Father Nick Petropoulakis,  Assemblywoman Nicole Malliotakis, Brooklyn, Staten Island 

These papers were enough to convince Assemblywoman Malliotakis to request the New York Congress to approve the Proclamation which was voted on and approved by Governor Cuomo this month. They met recently at her church where she and her son met with the Archbishop on a day of special commemoration for her Greek Orthodox Churches baptism honoring their 40 year of service to the community.  It was a deeply spiritual and hallowed occasion when this Proclamation was received.

Christine said, "I have always brought Stefanos with me in public and I have never hid him from my community.  They know how much loss he has suffered. "  Christine and Stefanos Mitsogiorgakis have given each of us a gift by establishing this day in one of the United States most prominent states! We thank them for shining light on this illness despite their difficult struggles.  This contribution will resonate eternally for every single family with PANDAS-PANS.

To read the New York Proclamation declaring October 9, 2013 PANDAS/PITAND/PANS Awareness Day, please visit http://open.nysenate.gov/legislation/api/1.0/html/bill/K680-2013.

Others Inspired to Follow Example and
Create Awareness Around the Globe
 
Upon hearing of New York's PANDAS/PITAND/PANS Awareness Day proclamation, many in the PANDAS community have become inspired and motivated to do the same in their area.  In one month's time, 15 requests for proclamations have been filed around the United States and a similar endeavor is being pursued overseas!

Illinois has now become the second state to have an official PANDAS/PANS Awareness Day declared. It will also take place on October 9, 2013.

PANDAS Network .org strongly encourages families to inquire how to apply for an Awareness Day in their area. If an official day is not declared, one can still show support and help educate the public on these devastating disorders by having your event or activity take place on OCTOBER 9, 2013.

To find out how to apply for a proclamation and find valuable resources for creating awareness, please visit pandasnetwork.org/awarenessday2013
NIMH IVIG Study is Now Closed
 
Enrollment for the NIMH IVIG study is now closed. We hope to see publication by mid to late 2014.  Thank you to those that helped inform new onset cases about the study, to those that participated, and to the NIMH for their dedication. 
Donate to Dr. Agalliu's Lab: UC Irvine Research
 
We are excited to be able to share an easy way to donate to Dr. Agallliu's PANDAS Research!
 
Dr. Dritan Agalliu studies the molecular, cellular and genetic analysis of mammalian blood-brain barrier development and the role of the barrier in disease pathogenesis. Dr. Agalliu research plans to explain the mechanisms that break down the blood-brain barrier in PANDAS. This knowledge will enable the development of therapies to prevent immune cell or antibody entry into the nervous system, thereby providing long-term treatment for PANDAS.

The laboratory is investigating two fundamental issues in the biology of the mammalian blood-brain barrier (BBB): 1) the mechanisms governing development and maintenance of the barrier; and 2) how structural components of the BBB are affected in diseases of the brain and spinal cord where barrier function is impaired.

Donate to Dr. Agalliu's research at https://ua-web.uadv.uci.edu/eGiving/.
Area of Support: Biological Sciences - Gift Designation : "PANDAS Research". 
Have you Completed the Online PANDAS/PANS Research Survey?
 
Reminder!

You are invited to participate in an online survey research study from the University at Buffalo in collaboration with Dr. Tanya Murphy from the University of South Florida to learn more about the symptoms, diagnosis, interventions, and clinical course of children with PANS including PANDAS and PITAND.

 

Participants in this study can elect to remain anonymous or they can elect to have their name and /or their child's information entered into a registry for future research. You can access information about the study to decide if you want to be involved by going to: http://tinyurl.com/panssurvey.

 
PANDAS-PANS Parent Support Group Central
By Kari Kling
 
Our support groups are a valuable resource in pushing awareness forward. If your support group has not discussed applying for an Awareness Day or organizing an Awareness Day event or activity, we strongly encourage you to do so at your next meeting. This is a great way to get everyone involved!

I will be happy to answer any questions or concerns you may have regarding this. Contact me, Kari Kling, PANDAS Network .org Support Group Coordinator, at azpandas1@gmail.com.