Vermont's Impact on Pediatric Autoimmune Disease Awareness
Vermont's Inspiring 5K for Pediatric Autoimmune Disorders
More than 200 individuals gathered in Burlington for the 2nd Annual PANS/PANDAS 5K, focusing on awareness, research, and support for families impacted by these disorders. The event took place at the Burlington Surf Club, where many came together to highlight the struggles and challenges faced by children with pediatric autoimmune brain disorders.
Understanding Pediatric Autoimmune Disorders
The PANS/PANDAS challenges can dramatically change a child's life in an instant. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) are conditions that arise when the immune system mistakenly reacts to infections such as strep or even COVID-19, leading to confusion, anxiety, and other serious cognitive symptoms. The sudden onset of these disorders often leaves families bewildered and struggling to obtain the necessary care.
The Emotional Toll on Families
The emotional impact on families grappling with these disorders is immense. Alexandria Rains, a Clinical Case Manager and Neurodiversity Specialist at NFI Vermont, mentioned, "Children with PANDAS are suddenly forced to battle the effects of brain inflammation that changes their lives overnight. Families face not only the heartbreak of these sudden shifts but also the exhausting fight for recognition, coverage, and support." This fight is crucial as accurate diagnosis and appropriate treatments can be incredibly elusive.
Fundraising for Positive Change
The race successfully raised over $14,000. These funds will be used to support the creation of a new Neuroimmune Psychiatry & Immunology (NIPD) Fellowship at Dartmouth Health, which aims to train physicians to better identify and manage PANDAS/PANS in children more effectively. Dr. Steven Schlozman, Chief of Child Psychiatry at the University of Vermont, emphasized, "Because these syndromes have different treatment approaches, it is vital that clinicians recognize this possibility and know how best to respond." This sentiment highlights the need for increased awareness and education surrounding these conditions.
Community Engagement and Advocacy
The Vermont PANDAS/PANS Network hosted this inspirational event, which gathered clinicians, families, and advocates to share their experiences and insights related to these challenging disorders. Founded by Adrienne and Devin Gaskell, the event arose from their own experience dealing with the ramifications of PANDAS and the misdiagnosis of their child.
Adrienne Coléon Gaskell stated, "Once you've witnessed your child lose pieces of themselves to this illness, you can't stay silent. This year's turnout shows that Vermont is ready to lead with compassion and advocacy." The empathy shared among participants and the collective desire to foster understanding were evident throughout the event.
Support from Local Organizations
The event received generous support from local businesses and organizations, including CrossFit Burlington, Optum, Mr. Louie, and The Alex Manfull Fund. These sponsors helped raise awareness and promote education regarding the realities of pediatric autoimmune disorders, playing an essential role in the continuation of this critical dialogue.
Looking Ahead
The awareness brought about by events like the PANS/PANDAS 5K is instrumental in ensuring a brighter future for affected families. As more people learn about the impact of these disorders, it becomes increasingly possible to improve diagnosis and treatment paths for children facing such distressing challenges.
Frequently Asked Questions
What is the aim of the Vermont PANS/PANDAS 5K?
The event aims to raise awareness and support for families dealing with pediatric autoimmune brain disorders.
What conditions are highlighted during this event?
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) are the primary conditions addressed.
How much money was raised at the event?
More than $14,000 was raised to support the new Neuroimmune Psychiatry and Immunology Fellowship at Dartmouth Health.
Who founded the Vermont PANDAS/PANS Network?
The network was founded by Adrienne and Devin Gaskell following their child's diagnosis with PANDAS after experiencing misdiagnosis.
Why is community support important for affected families?
Community support helps raise awareness, improves access to information and resources, and fosters a network of understanding for families facing similar challenges.
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