Inflamed Brain Alliance Announces Leadership Evolution to Strengthen Governance and National Impact
Inflamed Brain Alliance (IBA) is a national registered charity advancing support, advocacy, education, and research engagement for PANS and PANDAS in Canada. As we continue expanding our national impact for Canadian families affected by PANS and PANDAS, IBA is entering a new chapter of growth.
As part of our commitment to strong governance, accountability, and long-term sustainability, the Board of Directors has formalized new leadership appointments to strengthen oversight and operational clarity.
Kelsey Moench Elected Board Chair
Kelsey Moench has been elected Board Chair of the Inflamed Brain Alliance.
Kelsey brings nearly two decades of experience as a Registered Nurse, with a career spanning bedside care, education, and healthcare leadership, including her current role as a Nursing Unit Manager. Her advocacy began when she recognized her daughter’s sudden behavioral changes as signs of PANDAS, leading her through a complex diagnostic journey that ultimately required pursuing specialized care in the United States.
Her clinical expertise and lived experience uniquely inform her governance leadership at IBA. As Board Chair, Kelsey is committed to strengthening oversight, supporting physician education, improving health outcomes, and advancing research engagement and clinical collaboration across Canada. She is dedicated to ensuring families receive timely recognition, informed care, and compassionate support.
“When uncertainty takes more than any family should bear, advocacy becomes the force that restores clarity, compassion, and a steady light forward for those who deserve to be understood and believed.
Our family’s unexpected journey into the world of PANS/PANDAS taught me what uncertainty can steal — and what determination, community, and timely care can restore. When answers were out of reach, I learned to push forward, to advocate harder, and to build the pathways my daughter needed. Joining the Inflamed Brain Alliance is my way of turning those hard-won lessons into action: to bring clarity where there is confusion, compassion where there is dismissal, and a guiding light for families who deserve to be believed from the very beginning.”
— Kelsey Moench, RN, BN
Board Chair, Inflamed Brain Alliance
Marnie Deschenes Appointed Executive Director
Marnie Deschenes, Co-Founder and former Board Co-Chair, has been appointed part-time Executive Director.
Marnie co-founded IBA in 2020 alongside her husband, Richard, and a small founding Board following the sudden onset of PANDAS in both of her sons. What began as a grassroots advocacy effort has grown into a national charitable organization advancing education, awareness, and systems-level change for Canadian families impacted by PANS and PANDAS.
As Executive Director, Marnie will lead IBA’s operations, partnerships, programs, and national advocacy initiatives. This transition reinforces the separation between governance oversight and day-to-day leadership as IBA continues to mature as a national organization.
Marnie brings lived experience and national advocacy leadership to the organization’s continued development. She is dedicated to fostering collaboration among families, clinicians, researchers, and partners to ensure IBA remains mission-driven, accountable, and responsive to the evolving needs of Canadians impacted by PANS and PANDAS.
Richard Deschenes Continues as Director
Richard Deschenes, Co-Founder and former Board Co-Chair, will continue serving as Director on the Board.
Richard co-founded Inflamed Brain Alliance in 2020 with a vision of building a connected and resourceful Canadian PANS PANDAS community. He brings over 20 years of senior nonprofit leadership experience and currently serves as Leadership Giving Advisor at Wood’s Homes, a mental health organization supporting children, youth, and families.
He contributes expertise in governance, donor strategy, and sustainable organizational growth, with a focus on strengthening IBA’s long-term capacity to advance awareness, education, and funding for this often misunderstood condition.
A Strengthened Foundation for the Future
This leadership evolution reflects the natural progression of a growing organization. By clarifying governance and operational roles, IBA is reinforcing its commitment to transparency, accountability, and mission-focused leadership.
IBA remains committed to working collaboratively with healthcare professionals, researchers, and public institutions to strengthen recognition and care pathways for PANS and PANDAS in Canada.
We are deeply grateful to our Board members, volunteers, partners, clinicians, allied health professionals, researchers, educators, patients, and families who place their trust in us. Together, we remain dedicated to advancing brain and body health for Canadian families impacted by PANS and PANDAS.
Kelsey and her family at the 2025 Steppin’ Out for PANS PANDAS Walk, united in raising funds and awareness for the PANS PANDAS community.
Kelsey and her family at the Calgary Tower for the 2025 #LightUp4PANS Global Landmark Lighting Campaign, joining communities around the world to shine a light on PANS PANDAS awareness.
The work continues — and this next chapter positions us for even greater impact.
IBA’s continued growth is made possible through the generosity and partnership of our community. Your support helps advance physician education, research engagement, and advocacy efforts for Canadian families impacted by PANS and PANDAS. Together, we are strengthening care pathways and building a more informed and compassionate system of support.