Raising Awareness
Gray Colored Glasses is 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/PANDAS. 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.
Why this book matters
This book is something our communities desperately need.
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/PANDAS awareness far and wide, into medical settings, schools and community centers, and beyond.
How you can help
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.
Ann Bell Worley
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Partners & Contributors
Northwest PANDAS/PANS Network (NWPPN) is a regional nonprofit serving Oregon, Washington and Idaho that is committed to raising awareness, providing education and resources, supporting local children and their families, advocating for legislative changes and supporting local research.
PANDAS Network builds public awareness, provides much-needed support to families and gathers data and resources to better inform parents and the medical community about PANDAS/PANS.
The Look.Foundation supports children and young adults impacted by infection triggered neuroinflammatory disorders (e.g. PANS/PANDAS) through personal support, community-wide education, professional training, advocacy and grants.
Aspire, EXPAND, The European Immuno-neuropsychiatric Association, NAPPA, National Alliance for PANS/PANDAS Action, The Alex Manfull Fund
William Allen, The Bell Family Trust, Jason Bisso, Diana Booth, Gail and Steve Brookshire, Justin Brown, Bonnabel Callens, Amy Claman, David Crumm, The Cunningham Family, Zo Curtis, Susan DeLoatche, The Foyt Family, Tanya Fraizer (in honor of the Worley family), Liz Frayer, Jesse Gonzalez, Joe and Debbie Grimm, Melissa Jones, MD, The Kelly Family, Bob Lowry, Gregory Mace, Gloria Martin, Beth and Tim Shelton, Lorri Simon, Susan Stitt (in honor of Isaac Worley), Hellen Sutley, Derlene Williams, Kathy Wise, Ann and Todd Worley, Alan and Tiffany Wright
More about Front Edge Publishing, the MSU School of Journalism Bias Busters Series, and our partnership on the forthcoming PANS/PANDAS book:
Gray Colored Glasses 