PANDAS Network: 2021 in Review
The PANDAS Network has been busy this year. We created a PANDAS/PANS Research Roadmap to improve global research collaboration. Our brand-new website got launched. We organized a CME conference with the largest New York State healthcare network, Northwell Health. And we did all this and more while navigating a pandemic.
As always, we are dedicated to improving the diagnosis and treatment of children with PANDAS, like Rebecca and countless others. We’ve continued to work to build public awareness, provide much-needed support to families and gather data and resources to better inform parents and the medical community about PANDAS/PANS.
As the year comes to a close, we wanted to take this opportunity to bring you up to speed on some of our biggest achievements of 2021.
Created a Brand-New Research Roadmap
Our new Research Priorities: PANDAS/PANS Roadmap to a Cure is something we’re incredibly proud of. The first roadmap of its kind, the goal of this project was to expand research collaboration efforts and launch the PANDAS/PANS disease model. This will help us understand how PANDAS/PANS develop and allow researchers to find potential diagnostic and treatment approaches. We accomplished thanks to our talented and globally diverse scientific advisory board.
The roadmap clarifies disease stages and details top research priorities with actionable steps to meet these research goals. The aim is to create a worldwide collaborative effort and get people talking to each other to better accomplish these goals.
Launched Medical Education Conference with Northwell Healthcare of NYC
Traditionally, the PANDAS Network holds an annual conference to discuss progress in diagnosis and treating PANDAS/PANS. However, in light of the pandemic, we’re hosting a CME 6.5 virtual conference for medical professionals at New York City’s Northwell Healthcare. This was at the invitation and cooperation of Dr. Souhel Najjar, Chief of Neurology at Northwell and well known for his work with autoimmune encephalitis.
Understanding the Spectrum of Childhood Autoimmune Encephalitis including PANDAS & PANS will be held on World Encephalitis day, Feb. 22, 2022. Speakers include: Dr. Najjar; speakers from Italy, Australia, Mayo Clinic and Texas Children’s; and PANDAS/PANS researchers Pittenger, Agalliu, Shafrir and Spalice. Tell your provider about it and encourage them to attend! All video of the conference will be made available to families.
The conference focuses on educating neurologists about pediatric autoimmune encephalitis and the latest scientific research on PANDAS/PANS. You can view the full program agenda here.
Thank you to Northwell Health NYC for helping us make this happen!
New PANDAS/PANS Research
Another exciting happening in the PANDAS/PANS world this past year was this impactful IVIG study from Italy involving 55 kids. It clearly shows that IVIG works for acutely ill children within the first year of treatment.
Italian scientists performed other significant research during 2021, including a study on metabolism issues in PANDAS children, one case of COVID-19 teenage onset and its similarities to PANDAS, and a sleep study showing neuronal issues with PANS children in sleep cycles. Even though Italy is far from American soil, the research they are doing has already had a significant impact on not only American children but kids around the globe.
The PANDAS Network is so grateful to the Italian researchers who conducted this life-changing research. We also thank the Italian government for funding these studies. They will prominently feature in our Northwell Conference on Feb. 22, 2022, and their generosity and ingenuity will help kids with PANDAS/PANS around the world for years to come.
Launched a Brand-New Website
This year was also exciting because of the launch of the new PANDAS Network website. Most importantly, we wanted to make sure that information on PANDAS/PANS was available and accessible to anyone who needs it.
The website is a key tool for education for clinicians and educators. It helps put parents at ease with easy-to-understand but important information about PANDAS/PANS and related conditions. We worked hard to make sure it contained everything that PANDAS/PANS parents and families would need to navigate symptoms, diagnosis and treatment, as well as extra resources for educators, clinicians and parents.
There’s a large section on research, including clinical research, neurological research, immunological research and psychiatric research. On top of this, we offer brand-new ways to get involved, spread awareness and help advocacy efforts.
One of our favorite sections is the PANDAS stories that several families so graciously shared. These stories, whether about diagnosis, treatment, recovery or anything in between, give hope to other families dealing with the complexities of PANDAS/PANS. It’s no wonder parents and patients love this section just as much as we do. We are always looking to add more stories, as it’s inspiring and encouraging for other families going through this. So if you or your child would like to share your PANDAS/PANS story, we’d love to hear from you.
Gave Back to Children and Moms
Giving back to children and families is always at the top of our priority list at the PANDAS Network. This year, we did that in several ways, including launching our Rays of Light ambassador program to help children with PANDAS/PANS transition through difficult times. It’s also a powerful tool for introspection. We selected 5 Ambassadors and we will follow them for 3 years to share their stories of growth and healing. Our website and newsletters will keep you apprised of their progress. 20+ children also received the StoryQ journaling program for their use for one year.
Also, we sponsored the first-ever Sacred Healing weekend for moms of PANDAS/PANS kids. This was an amazing opportunity for mothers to get together and lend their support and care for other moms.
Sacred Healing Weekend for Mothers
On Oct. 8, 27 courageous and inspiring women from around the country gathered in person for the PANDAS/PANS Moms Sacred Healing Retreat, created by nurse practitioner Amy Joy Smith. Our facilitators Dr. Kim Ward and Dr. Hilary Stokes understand PANDAS/PANS and complex illness, and in fact treat a number of children and families in our community.
The gathering had a profound effect on these mothers and provided much-needed support and relief. As one mom said, “I felt like a giant weight was lifted.”
Few of these mothers had ever met in person. But many knew each other from Facebook groups or other social media. They had children ranging from 4 years old up to 25, in various stages of illness and recovery. For nearly all of them, this was the first time they’d been away from their children and families since well before the COVID-19 shutdown.
The purpose of the retreat was to provide a safe, healing environment to support parents with emotional and soul recovery from the burden of living with a child or children with PANDAS/PANS or Lyme disease. Another mother stated, “I loved connecting with so many other like-minded moms on this journey that will support me in my time of need, having the ability to honestly share my story and to feel safe enough to be vulnerable, to be heard and understood was huge.”
We aimed to recover or rediscover the deepest truths of our innermost selves, moving forward to mend our hearts and reclaim our lives from the toll of losses we’ve all experienced as parents of sick children.
Our hope was for moms to feel understood and give them a feeling of empowerment. One mother said, “I came away from the weekend realizing that all the worry and anxiety that I have that contributes to just about every decision I make each day can be lessened. Perhaps it won’t all go away, but I can have some control over it.”
Raised Awareness About PANDAS/PANS
Another way that the PANDAS Network does its work is by raising awareness of these diseases. This helps advocacy efforts and makes patients and families feel more understood and supported. This can go a long way in making the journey of navigating PANDAS/PANS feel even just a little bit easier.
PANDAS Network founder and executive director Diana Pohlman featured in Your Parenting Podcast, where she and the host discussed PANDAS/PANS and what the PANDAS Network does.
PANDAS Network’s Pohlman and treasurer Christy Jagdfeld also featured in an issue of Awareness Ties magazine, a digital magazine with 17 million readers whose purpose is to raise awareness for important causes. They both shared their personal stories and connections to PANDAS/PANS and how that brought them to the PANDAS Network.
The PANDAS Network Outlook for 2022
While we’ve had an impressive year, we’re always on the lookout for what’s next. What will help PANDAS/PANS families and children the most? We remain focused on expanding scientific research, as always. In 2022, Columbia University will be publishing work on genetics found in a large PANDAS/PANS cohort—it points to an autoimmune disease that is heterogeneous (not one specific gene) but all autoimmune in nature. Also, a long-awaited paper looking at the cytokine storm activation in PANDAS/PANS children will be published and replicated in mouse models to confirm that findings in human blood samples are accurate.
Next, the survey of young adults who relapsed (70 youths total) will be conducted in early January of 2022. Their genes will be studied to see if there is further evidence that this is an autoimmune condition that deserves acknowledgment when future generations walk into the doctor’s office. We have been pioneers, and it has been a hard road, but we are succeeding.
So as the year comes to a close, our minds not only reflect on what we’ve been able to accomplish in the last year but also how we will continue doing this work to help children and families dealing with PANDAS/PANS around the globe.