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When a child close to them showed a sudden, dramatic, and seemingly inexplicable behavior change, Tara and Dave Dollinger were surprised by how difficult it was to get a diagnosis to explain the abrupt transformation.
After struggling for 10 years to comprehend and treat this sudden-onset psychiatric disorder, the Dollingers’ loved one arrived at Stanford University and met Jennifer Frankovich, MD, MS, who identified the illness as pediatric acute-onset neuropsychiatric syndrome (PANS). A pioneer in PANS research, Frankovich co-founded the Immune Behavioral Health Clinic at Lucile Packard Children’s Hospital Stanford in 2012, the first clinic of its kind in the country. She and her team have gained a better understanding of PANS since then, but much remains unknown.
In response, Tara and Dave Dollinger recently donated $2.4 million to assist the efforts of Frankovich and collaborating scientists, who are searching for answers to better understand the triggers and disease course, and to hopefully develop more effective treatments for this debilitating disease. The couple hopes that this gift will lead to faster diagnosis and treatment for other families.
“Families are looking for answers,” Dave says. “Doctors are quick to put them on medicines, but no one has pulled it all together. Dr. Frankovich is a wonderful human being and a great clinical scientist. She has researchers from multiple disciplines working to understand this illness.”
Children with PANS have sudden onset of obsessive-compulsive behaviors and/or restricted eating, along with many other neuropsychiatric changes (such as anxiety, exaggerated mood changes, behavior regression, movement abnormalities, cognitive and memory difficulties, sensory disturbances, sleep disruption, and bed wetting). These symptoms usually occur after an infection that leads to a neuroimmune response. Because PANS is not widely recognized in the medical community, these symptoms are often attributed to other conditions.
The generous gift will establish the Tara and Dave Dollinger PANS Biomarker Discovery Core, an expanded biorepository of data, blood, and tissue samples from patients at the Stanford PANS clinic. The PANS biorepository will be open to all basic science researchers—even those outside of Stanford—who will use these samples to build a molecular map of PANS. The data they collect will lead to better diagnostic and treatment strategies.
“We are thrilled about the opportunity to expand our clinical database and biorepository,” says Frankovich. “It will enable us to advance patient care and produce research to guide clinicians around the world as they care for patients with PANS and related disorders. Thank you to Tara and Dave for this significant investment in our work.”
The Dollingers are optimistic that discoveries made through this biorepository will also bring PANS to national attention—especially among health care and insurance providers.
“Just by recognizing PANS as a disease and having a basic understanding of the symptoms and causes,” Tara says, “we can at least let children and their families know they’re being supported while they wait for a cure. Other people are rooting for them!”
The Dollingers live in Atherton. Their foundation, the Tara and Dave Dollinger Foundation, advocates for wildlife and for equal access to education and health care worldwide.
Thank you, Tara and Dave, for supporting research essential to comprehending this illness and providing hope to families who are waiting for answers!
Authors
- Jodi Mouratis
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- Angie Lucia
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Thank you for this article. This couple is truly amazing for this contribution to such a horrible and misunderstood illness
This is amazing news. I was the force behind the California resolution to recognize PANS/PANDAS and this support is a dream. Congratulations to the excellent team at Stanford and to the Dollingers for their support. During the hardest times for me, I kept asking myself, how many children do you need to help to make all your work worthwhile? The answer is one.
December 6th, 2020 I was diagnosed with PAN and have been in and out of the hospital. I would love to talk to you and find out more about your journey as I have very little to find out anything from.
Thank you Bobbi
So much gratitude for this generous donation. Hopeful that this mapping/research brings new answers for the families and children that are struggling with PANS. Thank you Tara and Dave Dollinger.
So much gratitude for this generous donation. Hopeful that this mapping/research brings new answers for the families and children that are struggling with PANS. Thank you Tara and Dave Dollinger.
Thanks so much for your donation. There are so many children and families suffering.
Tara & Dave Dillinger and to everyone who are making this happen, thank you . You are correct in that Drs are quick to prescribe psychotropic medications and label with psychiatric illness this disorder which has sudden onset and roller coaster symptoms. The chronic nature of PANS is debilitating to the child support system as well as the poor child who is suffering immensely. My child has suffered from this illness since last January 2020, he finally had 3 weeks of recovery, and I was sooo happy thinking this was resolved , but last night I saw indicators of it again….he is not the typical PANS patient in that he is older and has an underlying genetic disability ( Potocki Lupski Syndrome) which makes it even more challenging to find a provider who doesn’t just write it off as to be expected 🙁 it is hard to see your child who was pushing the limits and gaining skills to be as independent as possible, driving to and from his job, taking care of simple chores at home, talking in sentences succumb to this and just as hard trying to stand up to uniformed professionals who want to only treat the symptoms and not find and treat the underlying cause …my sons story is as typical PANS story. My heart goes out to other families, with my sons father dying at an early age (53) and no other support system in place, this 60 year old school teacher has been put through the wringer by systems that don’t work properly for the lower middle class and devastated watching my son endure the torture of this disease .
Wow! I cried when I read this article. I am the mother with 2 children who have PANS/PANDAS/AE due to undiagnosed and untreated gestational lyme + co-infections, heavy metals, and vaccines. We have maxed out almost everything in our retirement, $140,000 + to pay for alternative treatments (IVIG, long term antibiotics, UVBI + ozone, heavy metal chelation, and ONDAMED) and the investments have paid off. We are so grateful that our children are 80% + improved.
As a licensed Speech-Language Pathologist working with children with the diagnoses of autism, OCD, and being emotionally disturbed and being a mother who has seen my children change overnight and now heal I know that this condition is NOT RARE. It is rarely diagnosed correctly.
Most people do not have access to the treatment that my children have received. I hope and pray that this changes one day as so many children are missing their window of opportunity to heal and function at their best.
The journey to a diagnosis and care/cure is so long and hard – for the caretakers and the patients.
Thank you, Dollingers for the funding and esp. for not giving up until you found some answers.
Thank you, Dr. Frankovich for believing this is a real, medical issue with a real diagnosis and that treatment can make a difference.
Thank you, Stanford for providing resources.
Thank you, Jodi Mouratis for using correct terminology that squelches misconceptions about this.
Thank you so much for this donation. My daughter, Tessa Gallo, was one of Dr. Frankovich’s first patients.
I just read this article and just wanted to say Thank You to Tara and Dave for your very generous donations to help PANS
Thankful for Tara and Dave and their loved ones! I’m 79, learning about lifelong conditions that were diagnosed after a heart attack when I was 75 with painful spasms of my heart arteries. My sister and I fainted a lot as children with strict expectations of religious services attendance. As the oldest of seven, now all of us in our 70s, I have two grandchildren. My niece has 5 children. My youngest son and his wife have one child, limited by her cancer condition. Some of our children have autism. Learning that family heart conditions might be hereditary, I’m hoping as big sister to convince my siblings and their families to at least have a radiology CT cardiac exam for better health for them and for our grandchildren. My mother’s family had cardiac conditions and schizophrenia, perhaps hereditary. My paternal grandparents had heart problems possibly more from childhood infections. I’m glad I’m in a anonymized research study with my care at Stanford Interventional Cardiology. I know from my 23andMe ancestry and health DNA testing, that I do have a variant gene causing heart spasm conditions, ENOS T786C. My Facebook Prinzmental Coronary Spasm Support group now belongs to an International Heart Spasm Alliance which I will “heartily” support! I will support this BioRepository action as I cruise into my eighties!