Meet the Co-Founders
Committed to supporting Canadian PANS PANDAS families.
Inflamed Brain Alliance (IBA) was borne of thousands of excruciating stories of families across Canada tormented by a largely misunderstood and misdiagnosed disease.
This is one story. On June 9, 2013, Richard and Marnie Deschenes never imagined their once joyful and carefree family life would change in an instant… for no understandable reason. Their world became consumed by fear, confusion, and isolation as they watched a loved one withdraw from everyday life and struggle with debilitating symptoms.
Admittedly there may have been hints of obscure warning signs, but nothing could have prepared them for the profound dysfunction and trauma that was to come. Their family was suddenly navigating a reality that felt impossible to understand, while desperately searching for answers and support.
IBA Co-Founders Marnie and Richard Deschenes
Photo credit: CBC Calgary Article Calgary parents raise awareness about little-known childhood illness
Not Standard OCD
When they discovered through a school nurse that the symptoms they were witnessing could be PANDAS — and not standard OCD — they grappled with this unfamiliar medical diagnosis. Shockingly, the symptoms aligned with the criteria, and for the first time they felt they might finally have answers.
However, little did they know, those answers would be so evasive. Few healthcare providers were trained to recognize or investigate this unconventional condition, where immune system dysfunction can trigger neurologic and psychiatric symptoms. The lack of support was deeply despairing for the Deschenes family, and they feared others were also falling through the same cracks in the medical system.
For the next several years, while fiercely searching for medical support, their family endured escalating physical and mental health challenges, uncertainty, and trauma. Professionals speculated about the cause of the myriad symptoms, yet clear diagnoses and appropriate care remained difficult to access.
Guided with Patience and Empathy
Thanks to their circle of support, the Deschenes family made it through this excruciating time. Their silent heroes were the veteran PANS PANDAS parents, doctors who diagnosed and treated, therapists who validated their experiences, teachers who guided with patience, flexibility, and empathy, and friends and family who remained “in for the long haul.”
The Deschenes family carries a deep concern for the complex challenges and barriers faced by individuals living with PANS PANDAS and their support networks. They understand the desperation families experience when relentlessly searching for help, only to come up empty-handed.
Channelling their painful experiences into purpose, in 2020 they resolved to begin closing a significant medical and support gap by bringing together a small group of changemakers to launch IBA as a federally incorporated not-for-profit. On April 1, 2022, Inflamed Brain Alliance met the requirements for tax-exempt status as a registered Canadian charity.
IBA Founding Board of Directors:
(L-R) Richard Deschenes, Marnie Deschenes, Kendra O’Hara, Dr. Nina Gudeon, and Stephen Park
Creating Community of Belonging
One of IBA’s fundamental values is to nurture an intentional community where unique health journeys are honored through opportunities for healing, connection, learning, and giving back. We invite patients and their support networks – family, friends, educators, health providers, and researchers to join our caring community.
We’ll offer free storytelling therapy (Healing Stories), and eLearning (Healing Insights) programs. We’ll also offer creative ways to support our research program (Healing Discoveries) aimed at improving time to diagnosis and developing pathways to clinical care. Together we will ‘bring health to mind’.