Praikids.org

PRAI is deeply appreciative of your efforts to take your child’s care into your own hands and being a front-line advocate for increased awareness and care for children suffering from PANS / PANDAS. Effectively talking about an emotional and scientifically complex topic such as PANS / PANDAS can be difficult, so we put together this quick advocacy guide to help maximize the impact of these discussions. The Power of Your VoiceWe don’t need to tell you that caring for a child with PANS / PANDAS is hard work. Days are long, sleep is often interrupted, and many of us expend every available resource fighting for the care our children need. It can feel like we have little left to give in fighting the institutional barriers to undisputed medical recognition of PANS / PANDAS, better research, and insurance coverage for families.As hectic as our days may be, each day we are presented with numerous opportunities to advocate for our children through our routine interactions with others. One of our greatest challenges, and also our greatest opportunity, is that most people we encounter do not know the first thing about PANDAS / PANS. Finding opportunities to educate in a positive and inviting manner can create a sympathetic first impression of the disease. Spreading awareness like this can also educate parents to obtain earlier diagnoses of PANDAS / PANS in their own children.Whether it be at a PRAI event, a friend’s dining room table, or neighborhood barbeque, we each have the ability to generate empathy by putting a face to these diseases that will generate the type of grass roots public support we will need to change the hearts and minds of the medical industry and state legislatures. Tell Your StoryVery few of us are medical professionals. Accordingly, we may not all feel comfortable with describing the scientific details of PANS / PANDAS with strangers we meet. That’s ok. What you certainly have mastery of is how the disease has impacted the lives of your little ones and your family. Afterall, the most compelling argument we have isn’t a scientific one, but is instead the simple reality that thousands of children in this country are sick, and the medical industry and our legislators are not doing enough to get them the care and insurance coverage they need. Every parent can sympathize with the tragedy of having your child’s well-being and personality deteriorate overnight and the struggles that each PANS / PANDAS family faces in rearranging their jobs, lives, and finances to fight this battle without support from doctors or insurance. Simply telling your story will raise the awareness and sympathy we need to win this battle.You Don’t Have to Have All the AnswersThat’s partially because we need more research to answer critical questions about PANDAS/PANS. But beyond that, what information currently exists is voluminous and often confusing to non-medical professionals. That is why PRAI has prepared a brief Fact Sheet that you can reference to cite the key information about the disease. Beyond that, if you are discussing PANS / PANDAS and have a question you aren’t able to answer, that can be an opportunity to point interested parties to PRAI as an organization working on the latest research and issues related to PANS / PANDAS.Keep Things (Relatively) PositiveDiscussing the disease, which has disrupted our lives is never a pleasant conversation. And while we want to engender empathy in those who listen to us, too much negativity may shut down those whom we wish to reach.The same empathy that will win us allies can prevent the people we speak to from asking critical questions that would grow their understanding of PANS / PANDAS and our efforts to find treatment for our children. Providing objective summaries of the diseases and details of our respective stories can encourage follow-up questions from those who may otherwise be hesitant to ask if they feel that posing questions may trigger pain or sadness.Avoid Controversial Statements That May Offend Helping sick children obtain care and coverage is a concept that appeals across a wide range of personal and political philosophies. That is why it is critical to stay on the message of raising awareness of PANDAS / PANS and raising funds for the critical research that will improve care. Doing so requires we avoid making statements that reveal political preferences, reflect poorly on an occupation or other class of people, or discuss medical theories not directly associated with PANDAS / PANS. Practicing this discipline will keep our audience open-minded by avoiding defensive responses to issues not necessary to understanding how they can be an ally of PRAI.Below are a few examples of how to reword statements in a way that avoids unnecessary biased language:Avoid: “We’ll never get traction on critical legislation as long as the Current Administration is in place, they just don’t care.”Instead: “It’s critical that we educate and express our concern to elected representatives throughout the State to get momentum behind some of our legislative initiatives.”Avoid: “Most pediatricians are ignorant about PANDAS / PANS and you have to travel miles away to see someone who will actually do a decent job diagnosing PANDAS / PANS”Instead: “Part of our efforts relate to educating medical practitioners, we want to partner with pediatricians to keep them informed about PANDAS / PANS and the latest research to help prevent future misdiagnoses.”Avoid: “I feel the same way about vaccinations, they really aren’t good for our kids.”Instead: Avoid mentioning vaccinations or other controversial medical subjects. The people we encounter may have strong opinions on unrelated medical matters, and bringing these up may distract our discourage them from our central message: PANS / PANDAS is real and children suffering from it need better treatments and scientific understanding of the diseases.Asking for HelpThe end goal of advocating for our children and educating our communities is to drive change. That change cannot happen if we don’t ask those around us for help and support. Asking strangers (or even our closest friends and family) for assistance can sometimes feel uncomfortable, but doing so is vital to helping our kids. Referencing PRAI’s efforts can be a natural and effective way to transition into an ask of those you meet. Discussing PRAI’s fundraising and awareness initiatives, and noting that PRAI (and your child) has a need for people to not only donate to the cause, but also to volunteer time or even signal their support for the recognition of the disease begs the question “What Can I Do to Help?”Never shy away from directly answering the “What Can I Do?” question by suggesting a donation to PRAI for research, or an upcoming volunteer event. Additionally, we encourage you to direct people to PRAI’s official website, , to learn more about PANS / PANDAS or to donate.

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