We know how overwhelming it is to navigate this complex medical illness. We hope you find the resources above useful in your journey. Whether you're at the state of advocating for your child, advocating for the cause, or both, we want you to know, you are not alone. We are here. And we will stay here, until we find a cure for childhood neuroimmune disorders.
Why is PRAI working towards a patient-centered research model?
When we saw this amazing Ted Talk, by Sharon Terry, CEO and Founder of Genetic Alliance, we were so inspired, we knew this was what the PANS community so desperately needed. We needed our power back and our voice to be heard.
PRAI believes that families have unique insight that will contribute to more targeted research and increase our understanding of neuroimmune illnesses. By sharing medical and environmental data and providing biological samples through an anonymous open-source model under Genetic Alliance, we can allow families the ability to shape their own healthcare by providing the infrastructure for true collaboration between the scientific and patient community.
So how is the scientific community involved?
As we build a think thank of scientists with differing perspectives, the PANS community can provide this research team with data and samples to aid in their scientific discovery and help in the creation of a research road map. By offering patient-reported environmental and medical information we can give researchers unique insights that they may not necessary get inside a PANS clinic. With biological samples, we can offer new innovative scientists who lack the funding the opportunity to investigate PANS on a small budget. And work in conjunction with labs to help design studies that families think are important.
Ultimately, PRAI is working on 2 tracks:
- In 2019, we are bringing the best researchers from around the world together for a scientific think tank. Each one with differing perspectives and backgrounds. The PANS community can provide this research team with data and samples to aid in their scientific discovery and help in the creation of a research road map. By offering patient-reported environmental and medical information we can give researchers unique insights that they may not necessary get inside a PANS clinic. In our 3 year plan, PRAI will work towards getting those projects funded through major donor campaigns & advocating for research funds at the National Institute of Health.
- With biological samples and patient-centered data, we can offer young innovators and citizen scientists who lack the necessary funding the opportunity to investigate PANS on a small budget. We can work collaboratively with labs to help design studies. This will allow us to investigate the areas that families find critical to finding answers for our children. And focus on a more multi-omics type approach.
Ultimately, by being true partners with the scientific community, we can help them do their jobs by offering them funding, data, and samples which will accelerate discovery for these illnesses.
How will we know the samples in the biobank can be trusted?
The Genetic Alliance biobank is supported by a strict IRB process. Samples are currently being used by the top 10 pharma companies and several Ivy League university labs. In collaboration with the registry, researchers will also be able to pair medical data with the samples provided to do more targeted precision medicine studies and identify sub-groups within the PANS population.
Who own's our data and samples?
You do. With this innovative patient-centered model, each participant will own their own data and biological samples and have the opportunity to share it with whomever they wish, whenever they wish. Long gone are the days where drug companies and academia alone drive the research agenda. The power can now be in the hands of the people. And we think that's exactly where it belongs.
What's PRAI's involvement?
PRAI wants to serve as a link between families and researchers making this innovative resource available to ultimately transform the health of our children.
Together, with our children’s interest at the forefront, PRAI can be directly involved in promoting scientific innovation and more rapid and efficient progression of research in collaboration with our community. By providing the necessary crowdfunding tools and engaging a broad volunteer base we will prioritize the research projects PANS families want to see happen. PRAI will work towards continuing to build relationships with the scientific community to encourage their involvement and make this vision a reality.
But as candidly as possible, we can't do this without your help. There's no top heavy organization here. PRAI is the PANS community. It's up to us. All of us. That's what the PRAI's vision is all about.
We need 500 parents to commit to raising $1,000 each by the end of October in celebration of PANS awareness day so we can make this dream a reality. And every dollar raised in our virtual campaign goes 100% towards these research programs.
Do we want to see studies regarding Mast Cell Activation, Lyme, Genomics, Diet? Do we want to investigate specific strains of strep or create a heat map of environmental exposures in the PANS communities most populated areas? Then WE can raise the money, provide the data and biological samples, recruit the researchers, and get it done.