Q: How did you first learn about PANDAS?
A: In April of 2014 our 5 yr old daughter, began displaying severe OCD and anxiety after having Strep throat. I "googled" OCD in children and found the PANDAS Network website. I was thrilled to find a symptom list that matched what we were seeing in our daughter. Unfortunately, when I presented the list to her
pediatrician he said PANDAS is in his opinion "controversial" and since she did not currently have strep she could not have PANDAS.
Q: That must have been incredibly frustrating. How did your daughter eventually get diagnosed?
A: Yes, we were very confused but we trusted our doctor. So, our daughter began therapy for OCD and "panic attacks." We learned later these were really PANDAS rages. After seeing video of her attacks the psychologist suggested that we seek a physiological explanation for her behavior; he did not believe she was just panicking, but suspected a brain tumor. After many months of tests we were at a dead end. Then...the breakthrough came in the form of a Mom, also an M.D., who has three children recovered from PANDAS. We met socially and thanks to her courage to speak out we visited Dr. Latimer for the diagnosis and treatment that lead to our daughter's recovery.
Q: WOW! So, now you are the Executive Director for the PANDAS Network! Tell us how that happened.
A: Yes!! It's pretty amazing- when your greatest passion intersects with your professional life. I am thrilled that I have such an amazing opportunity to help support families who are living the nightmare we did. My first thought when our daughter began to recover and I could poke my head above water was, "I have to do something..." So, I decided I would start a non-profit...but then I remembered where I received my first information on PANDAS- the PANDAS Network website! "Why create something new?" I thought. I'm fortunate that as I began exploring ways to help PANDAS Network the Executive Director position was posted....and here I am!
Q: OK so what now? What are your hopes for PANDAS Network?
A: WOW...well I could maybe write a book answering that question, but I'll try to give you my short list. The PANDAS Network has a core mission - "To build a compassionate community for PANDAS families." Compassion comes in many forms. For me it means emotional support, financial support - support in the education of doctors, teachers, and the community at large. It also means funding research that results in the care and insurance coverage our families desperately need. First and foremost, I want to see "us" - PANDAS families come together as one unified community. We are much stronger working together than working in small groups. I'm excited to see what we can accomplish when we pool our talents and resources.
Q: I like the idea of one unified group, but some hesitate to give to a national organization like PANDAS Network because they are not sure if they will see their dollars put to work in their community...in ways that will impact their lives. Can you speak to that concern?
A: Sure! To be honest, I had that same concern and that is why initially I thought... "I'll start my own local PANDAS non-profit." However, as I began researching how other poorly understood diseases became well-known and well-funded I realized it was because the "disease community" operated and one unified group. It was clear to me that I wanted to partner with PANDAS Network.
Q: If you could tell our community of parents one thing what would it be?
A: We need you! Now that the scientific controversy around PANDAS/ PANS is dispelled our organization is shifting to focus on advocacy, research and better treatment. To meet those goals, we need our community to fundraise. I had a Mom yesterday share the simple idea of a virtual 5K. Assemble 40 friends to run a 5K together as a group (maybe around your neighborhood or around your school's track). Ask each friend to donate $25 to participate and in one hour on a Saturday morning you have raised $1,000. Imagine if one family from each state did that.. $50,000- A BIG amount for PANDAS Network.
