PANS/PANDAS Awareness Day is just one month away on Wednesday, October 9. As that day approaches, I’m excited to share my latest project with you and tell you how you can join this important work.

I am representing a first-of-its kind book in partnership with Michigan State University School of Journalism and Front Edge Publishing on the subject of PANS, Pediatric Acute-Onset Neuropsychiatric Syndrome. This book will be part of MSU’s award-winning Bias Busters series, asking and answering 100 questions about PANS/PANDAS to introduce readers to this emerging medical diagnosis and raise awareness both within the medical community and in the general public. 

As David Crumm, co-founder of Front Edge Publishing, puts it, “A book is a community between two covers.” This book will be the result of a national—even international—conversation among experts in the field and real families who are impacted by PANS/PANDAS. Journalism students from MSU will take a deep dive into this “hidden” neuroimmune disorder, providing answers to questions the general population doesn’t even know to ask. With an estimated 1 in 200 children and youth suffering from PANS/PANDAS, this book is something our communities desperately need. It will absolutely pay dividends in the awareness it provides.

Why this book matters

As those who know me personally are aware, my son Isaac was diagnosed with PANS in 2020, after suffering with symptoms for over seven years. (See The Short Story.) And half of the people in our social circle—including my husband—are doctors. How is this possible? Because many physicians have never heard of PANS/PANDAS, and even those who have lack a basic framework to recognize or consider it in their patients. This needs to change.  

Many excellent nonprofit organizations have emerged since PANDAS was first identified in 1998 and the diagnostic criteria for PANS solidified in 2010. These organizations are doing critical work: supporting research initiatives, offering resources to PANS/PANDAS families, lobbying for legislative changes and insurance coverage, and bringing scientists and physicians together to focus on this complex neuroimmune disorder.

The purpose of this book is to support and amplify the work of all of these organizations by offering the best information currently available in a brief, accessible volume and helping to expand the audience of PANS awareness into medical settings, schools and worship centers, and the general public. 

I often ask myself: What if one person in our circle of friends and acquaintances had known about PANS and suggested we look into it? How much suffering could our son and our family have been spared? This is why I aspire to make PANS a household name, one that people in every community can recognize, leading to greater understanding, earlier intervention and ultimately better outcomes.  

A call to action

The MSU Bias Busters course for production of this book will begin meeting in January 2025, and the anticipated publication date is fall 2025. We need to raise a minimum of $15K to cover production costs of this book. Neither the editors (myself included), nor the publisher or students will be taking a salary. The cost of the project includes pre-press setup, book design, keyword analysis, promotional copies and mailing, as well as initial distribution strategies. (And of course, more funds raised equals even greater reach.)

I am already in conversation with nonprofit organizations in the PANS/PANDAS community around participation and funding. I also know this is a community that is overwhelmed with fundraising needs and demands. As a result, I am looking for donors outside our community, as well, who catch the excitement and want to be part of this landmark project. 

We will accept large, named donations or small contributions of any amount to get these books created, published, and in the hands of communities across the globe. If you know of an individual, family or organization that may be interested in making a substantial donation, please share their contact information with me, and I will reach out to them directly.

For me, this book is a passion project, to bring PANS Awareness to the largest possible platform. For the MSU School of Journalism, it’s a perfect fit with the Bias Busters series and its new emphasis on disabilities and public health. And finally, a book on PANS aligns beautifully with the founding motto of Front Edge publishing: “Good media builds healthy community.” 

Please view my official appeal video, and feel free to share it with friends along with this link to contribute: https://givebutter.com/PANSbookproject.

Let’s make PANS a household name, together.