Hard Work and Vision = Success in Advocacy
In 2009, PN started as my wish to connect with a few families traumatized by PANDAS. We have grown to global proportions thanks to advocates made up of parents and physicians alike. Your donations to PN have allowed us to grow into a new, beautiful website that houses videos & pdfs of each lecture from the Columbia U Common Threads Conference.  Link to Video Presentations and Link to PDF'S of Speaker Presentations.   Your donations allowed us to expand dialogue as we brought in doctors from around the world (Denmark, Israel, Turkey). Our mission has been fruitful and international collaboration continues to grow. 

In 2019, we will be more exacting in our approach as an information-hub that is research based & focused on solving the problems of strep bacteria and its impact on encephalitis, PANDAS and Sydenham Chorea.  Parents and doctors alike are paradigm-shifting heroes.   Each treating physician/researcher deserves tremendous accolades because this work takes COURAGE , its exhausting, and often a lonely path.  In 2020, we will formalize our gift giving process with a Grant/Gift Review Board that oversees our grants/ micro-gifts program. 

This year marked the establishment of The Alex Manfull Memorial Fund for Research, Education and Treatment of PANDAS in Adolescents and Young Adults. It is the fund's goal that other young adults, as well as children and adolescents, will have greater treatment options and that no more lives will be cut short due to PANDAS.
 
Alex’s strength to understand and fight the debilitating effects of this autoimmune disease of the brain has significantly changed the conversation in the PANDAS community. It highlights the need to redouble research efforts to educate the medical community and families more effectively regarding the potential impact of PANDAS on young people’s lives.   (Link to Memorial Fund Here)


Thank you community for uniting and healing our children,
The PANDAS Network Board of Directors
We Proudly Announce $80k to Research
The families of Pennsylvania, as spearheaded by Chuck & Renee Lumio, have raised $80,000 to be used as directed gifts to PANDAS research.  By focusing on one bacteria and unlocking those mechanisms, the broader topic of AE and PANS can be studied. Please see highlights of this year’s fundraiser and generous sponsors HERE . 

Dr's Dritan Agalliu and Tyler Cutforth, Columbia U, Agalliu Lab, will receive $50K for research of basal ganglia encephalitis (BGE) investigating underlying post-infectious mechanisms in BOTH human patients and animal models. Blood serum cytokine/growth factor biomarkers are being investigated as they impact the blood-brain barrier and trigger neuroinflammation (preliminary work to be published soon in a high level journal).   Further, they will investigate genetic risk factors of BGE using using state-of-the-art whole exome sequencing and genome-wide association studies in collaboration with the Center for Applied Genomics, Children’s Hospital of Philadelphia (September 2018 Newsletter Here)

Dr. Kyle Williams, MGH-Harvard, PANDAS Clinic will receive $30K for Novel MRI Techniques (research only at this time).  This is a follow-on to a prior gift of $30K that has yielded successful preliminary finds showing onset and remission with this novel MRI. Dr. Williams states, “The basal ganglia is comprised of multiple discrete nuclei (e.g. the caudate nucleus, the putamen, and the globus pallidus), and we have examined our MRI markers in each of these nuclei to look for measures of neuroinflammation.” Dr. Williams initial results have shown multiple abnormalities in these areas of the brain in children with PANDAS. (List of Prior Micro-Gifts/Grant Here)

(L to R) Renee Lumio, Dr. Cutforth, Dr. Agalliu, Diana Pohlman
(Center) Chuck Lumio
The Believe Necklace


Consider this as a gift option for your family and friends. It gently spreads awareness & imparts a message of healing.........

COURAGE - TRUTH - HOPE - FAITH - BELIEVE

Join the fight for our children. The PANDAS/PANS/AE necklace is a perfect way to share your intention. 30% of sales goes to further research and awareness.

Words have power. Collectively we stand with COURAGE for our children. We share our TRUTH. We HOPE for early diagnosis and treatment without barriers. We have FAITH that our message will be heard. We BELIEVE in change. Choose your word and raise your voice so our children can have theirs back.   

*Free shipping through 12/18 .


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Designs to Donate
You can purchase high-end designer fashion forward items here.

5 % of the proceeds of purchases go to PANDAS Network thru the month of December.


May your days be filled with peace, hope, and joy this holiday season.

As always, thank you for your loyalty, and support.

PANDAS Network Team

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