Wedged between NAPPA’s very successful Advocacy Day on Capitol Hill on June 2 and TAMF’s exceptionally successful 5K Run/Walk on June 3, The Alex Manfull Fund hosted a sold-out dinner at the beautiful Army Navy Country Club in Arlington, VA. About 70 people gathered to celebrate the first-ever Advocacy Day on the Hill in support of PANS/PANDAS. It was the first time that many people met in person, had the opportunity to express their support for one another, share stories, and reap the emotional benefits of the company of others who understand the ravages of these disorders. There were lots of hugs.
Guests enjoyed a musical performance and talk by composer/pianist Shelby Lock and a talk by “CODA” actress Kayla Caulfield, both of whom have personally experienced PANDAS/PANS.
Additional remarks were provided by:
Susan Manfull, PhD, Co-Founder of The Alex Manfull Fund (TAMF)
Shari Strulson CalPANS providing community outreach, education, and awareness for PANS/PANDAS families in California, including the passage of AB907.
Beth Latimer, MD, Pediatric Neurologist and founder of the Latimer Neurology Center
Gary Kaplan, DO, Founder and Medical Director of Kaplan Center for Integrative Medicine
Amanda Peel Crowley, Co-Founder of the National Alliance for PANS/PANDAS Action (NAPPA)
Brent Harris, MD, PhD, Neuropathologist and Director of the Georgetown University Brain Bank where the POND (PANDAS/PANS and Other Neuroimmune Disorders) Brain Bank is held.
Susan Manfull, TAMF Executive Director, presented Dr. Brent Harris with a gift to the POND Brain Bank at Georgetown University Medical School from the funds TAMF raised in the 2023 5K Run/Walk. The gift will be used to support the ongoing efforts of Dr. Harris and his staff to bank brain tissue from individuals diagnosed with PANDAS/PANS and other neuroimmune disorders and to promote the availability of this tissue for research that advances the understanding of these disorders.
Shelby Lock’s musical performance and talk
Transcript* of Shelby Lock’s talk delivered at our event:
17 years ago, my life changed forever when I caught a mild virus that left me with PANS. I went from devouring books above my grade level to not being able to read a single paragraph independently. Out of nowhere, I was consumed by severe anxiety and Obsessive-Compulsive Disorder. My handwriting deteriorated, I had spells of intense depression, and I kept getting recurrent fevers. No doctor knew what was wrong, and meds never helped, so this became my normal for the next eight years.
I wouldn’t have survived had I not found music. Although I struggled with “simple” things other kids took for granted, I poured myself into piano, composing, and audio engineering. Music became my world, and it was the one thing I could still do that made me know there was a place for someone like me even if I had challenges no one could fully understand. As the years went on, I learned to accept the hand I’d been dealt and found refuge in my music. Still, you can only go so long without treating brain inflammation…
In college, I caught Strep throat, which made all my symptoms come roaring back. If you can imagine what it’s like to be kidnapped from your own body, where what’s left behind is just a shell that only looks like you, you can begin to understand what PANS was like. Unfortunately, getting a diagnosis was an uphill climb because the “P” in PANS stands for pediatric, and at that point I was a young adult. Doctors told me PANS was controversial. Besides, they said, it had been going on for many years, so it was probably too late to do anything besides psychotropic meds and therapy anyway––so I continued to decline.
Finally, after eight years and fifteen doctors, I got a proper diagnosis after traveling out of state to one of the few PANS specialists in the country. I spent the next four years struggling to get to and stay in remission, all while fighting my way through college. I hung onto my degree programs with a death grip, as pouring myself into music was still what kept me going. I had times when the treatments worked great, and I felt the most like myself that I’d ever felt since age eleven, and then I had relapses when my family was terrified I wouldn’t survive. My story could have so easily ended like Alex’s.
Today, I’m pleased to say I’ve been in remission for five years—something I didn’t think I’d ever be able to say. I’ve been off all treatment for PANS for two years. I have my mind and my self back, and I will never take this for granted. I choose to advocate and speak out for all of the people out there who are too sick to do so, and for all those who don’t yet have a diagnosis.
Because I went so many years without treatment, there have been long-term consequences, the greatest of which is developing Myalgic Encephalomyelitis after a virus. Now, I’m mentally well but physically disabled. Nevertheless, my story is not a tragedy. I am one of the lucky ones who was able to be correctly diagnosed and treated. I am an outlier, because for every story like mine, there are hundreds of others who never even know they have PANS. Without a proper diagnosis, people with PANS are confined to a lifetime of mental illness and unsuccessful treatments.
It doesn’t have to be this way. With greater awareness in both the public and the medical community, people can receive treatment and get better. Today, organizations like The Alex Manfull Fund are helping to ensure no one has their life cut short or their potential lost to this devastating illness. We have the opportunity to make sure mine is the last generation for whom years of suffering is the norm.
Thank you, for all of you who are part of this brighter future for neuroimmune patients.
*Edited by speaker, Shelby Lock
Shelby Lock – June 2, 2023
Kayla Caulfield’s Talk
In Kayla’s talk, she expressed how fortunate she was to get the help she needed — with the perseverance of her mother and the help of a wonderful doctor at Tuft’s children’s hospital when Boston Children’s Hospital, where she and her mother initially sought help, offered no effective treatment for immune-mediated neuropsychiatric disorders triggered by strep. That is, for PANDAS. She said that she shares her story to give others hope that getting help is possible. Kayla spoke passionately about her fervent hope that her generation would be the last to suffer from PANS/PANDAS.
“Going the Distance” Dinner (June 2, 2023)
Wedged between NAPPA’s very successful Advocacy Day on Capitol Hill on June 2 and TAMF’s exceptionally successful 5K Run/Walk on June 3, The Alex Manfull Fund hosted a sold-out dinner at the beautiful Army Navy Country Club in Arlington, VA. About 70 people gathered to celebrate the first-ever Advocacy Day on the Hill in support of PANS/PANDAS. It was the first time that many people met in person, had the opportunity to express their support for one another, share stories, and reap the emotional benefits of the company of others who understand the ravages of these disorders. There were lots of hugs.
Guests enjoyed a musical performance and talk by composer/pianist Shelby Lock and a talk by “CODA” actress Kayla Caulfield, both of whom have personally experienced PANDAS/PANS.
Additional remarks were provided by:
Susan Manfull, TAMF Executive Director, presented Dr. Brent Harris with a gift to the POND Brain Bank at Georgetown University Medical School from the funds TAMF raised in the 2023 5K Run/Walk. The gift will be used to support the ongoing efforts of Dr. Harris and his staff to bank brain tissue from individuals diagnosed with PANDAS/PANS and other neuroimmune disorders and to promote the availability of this tissue for research that advances the understanding of these disorders.
Shelby Lock’s musical performance and talk
Transcript* of Shelby Lock’s talk delivered at our event:
Kayla Caulfield’s Talk
In Kayla’s talk, she expressed how fortunate she was to get the help she needed — with the perseverance of her mother and the help of a wonderful doctor at Tuft’s children’s hospital when Boston Children’s Hospital, where she and her mother initially sought help, offered no effective treatment for immune-mediated neuropsychiatric disorders triggered by strep. That is, for PANDAS. She said that she shares her story to give others hope that getting help is possible. Kayla spoke passionately about her fervent hope that her generation would be the last to suffer from PANS/PANDAS.