You are not alone.
We know how isolating this condition can be. We know how long you spend researching online, praying, and hoping for some answers as to why this happened to your child. We know you’re scared. We know you feel overwhelmed about treatment options. We know you’re reading conflicting information and don't know where to start. We know you’re wondering how you’re going to pay for treatment. We know. We can’t promise that we are going to fix this for you. We can promise that PANS Research and Advocacy Initiative will do whatever we can to change the landscape of this horrific disorder as it exists today.
We promise to connect providers unfamiliar with the diagnosis with knowledgeable practitioners.
We promise to raise money for research so PANS/PANDAS is one day covered under insurance and a standard treatment protocol is established.
We promise to knock on legislators' doors to demand change and tell our stories.
We promise that we care about the suffering you and your family are going through.
And we promise to do whatever we can to change it and to give you hope for a brighter future for your children.
With the determination that only the parent of a sick child can fully appreciate, we promise to give a voice to those of you who are suffering in silence.
We want to connect with you. One of the most isolating aspects of this disorder is feeling like no one understands what you’re going through. We’ve launched support groups across the state of Virginia, and we will continue to launch groups throughout the mid-Atlantic to ensure you are getting the social and emotional support that we so badly need. We hear you. We are you. And we are in this together. All of us. We can’t do it alone. We need your support too.