Our mission is simple:

Find a cure.

 

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Our Story

The International PANS Registry was launched by Pediatric Research & Advocacy Initiative (PRAI) a parent-run 501(c)(3) organization aimed at accelerating patient-centered research for families suffering from neuroimmune disorders. Thanks to an outpouring of community support, PANS parents hosted a series of 5k events that raised over $300k in three years for PANS research and education. It is their dedication and commitment to healing our children that made IPR possible.

PRAI awarded its first research grant of $75,000 to the incredible research team at Stanford PANS Clinic to investigate what role dysfunctional monocytes may play in PANS.

After having candid conversations with members of our advisory board about the barriers that prohibit PANS and PANDAS from being widely accepted, we came to the conclusion that one of the biggest hurdles to understanding the disease was the lack of large scale data.

We were advised that the fastest way to accelerate research was to provide scientists and post-docs with free data thereby encouraging labs to investigate PANS. We committed to pursuing IPR as a resource to improve quality of life for the PANS community after confirming this reality with dozens of researchers.

Across the next two years, we gathered informal data from skeptical clinicians, frustrated parents, and interested scientists to further elucidate the barriers to children getting proper diagnosis and treatment.

Through informal polling, we found that thousands of families shared clinical histories and lab markers not yet discussed in the scientific literature. It was then we became convinced that a formal data collection registry for researchers was critical to moving understanding of PANS and new treatment options forward.

After interviewing several epidemiologists, Travis Nelson, MPD, and Acting Chair of Pediatric Dentistry at the University of Washington, referred us to Erin E. Masterson, PhD, MPH.  We knew immediately we had found the perfect person to lead our project. Erin’s commitment to engaging in scientifically sound research instantly impressed us. We embraced her lack of knowledge on the disease itself, knowing she would leave her bias at the door. We hired Erin and pursued our passion for creating a patient-centered research project, born out of the awe inspiring work we have seen parents accomplish when the answers were not available to them. Where skepticism and lack of research and awareness existed, parents became experts on a complex chronic illness, healing their children despite the lack of formal research to prove what they were doing was working. It is that inspiration that makes our patient-centered approach something we are most proud of.

Our Mission & Partners

The IPR Registry Committee, a program of Pediatric Research & Advocacy, reached out to families, non-profit organizations, clinicians, scientists, and the top experts in the country for feedback and guidance on IPR and interviewed them to find out what information they would find valuable. We have formed a valuable partnership with The Foundation for Children with Neuroimmune Disorders, a sister organization, dedicated to improving lives for families with PANS.

Our efforts are now focused solely on advancing PANS research through broad data sharing and ensuring the IPR database is strongly interconnected with the PANS community.

Our intent is to have IPR serve as a hub of information while keeping the family, and most importantly, the children at the center and heart of all we do. We are honored to partner with many incredible people and organizations and hope that in this process we have gained the trust of the patient community. As always, we are committed to one goal above all else—ensuring our children live whole, happy, and healthy lives. The IPR team has the deep held belief that one day all children will claim victory over PANS.

Dollars Raised

Through the dedication and drive of determined parents, PRAI raised $250,000 in just three years for PANS research efforts. Those efforts enabled us to create IPR.

Volunteers

Dedicated volunteers hosted galas and 5k’s, created fundraising pages, sat on advisory committees, wrote thank you notes, and assisted in efforts to help families suffering from PANS—all while caring for their own sick children.

Contributors

Over 3,500 generous individuals donated to making the IPR a reality. When tasked with changing the trajectory for those suffering with PANS, they joined together in an effort that will make a true difference for our children.

Your Donations Make a HUGE Impact

2020

  • Amount of Funds that go directly to researchers 100% 100%
  • Administrative Costs 0% 0%
  • Management 0% 0%
  • Organization Growth 0% 0%

A Letter from PRAI Executive Director and Registry Sponsor of IPR

We are beyond grateful for the love and support we have received from the parent community while building this registry. There have been so many incredible insights shared that have allowed us to get to where we are today. You supplied funding. You advocated. You wrote your legislators. You thanked your doctors. You piloted the registry. You helped with the website. You did more than we could have asked for. We hold the belief that we will find answers for children with neuroimmune disorders. If we did not believe this so deeply, we would not have continued on in the race toward healing for our children. We are indebted to you for your time, your trust, and your patience as we set forth on this endeavor. The words “thank you” fail to portray the depth of our gratitude for all you do, not just to advance the cause, but to love your children every day, just as they are, with all your heart, all your mind, and all your soul—even more than you love yourself.  It is the truest definition of love we can think of.

Jessica Gavin

“None of us, including me, ever do great things. But we can all do small things, with great love, and together we can do something wonderful.” 

– Mother Teresa”