This post is a long time coming.
Since starting PRAI, I’ve spent a great deal of my time trying to figure out where to focus our attention. The needs of our community are so great.
Families are being ravaged by this illness and so many of our marriages are ending in divorce. The suicide rate is high. Caregiver stress is breaking down our own bodies so we too are developing chronic diseases as we struggle to advocate for our children’s complex medical needs. We are broken and isolated.
We need support.
Doctors know so little about PANS & PANDAS, some are still naive enough to not “believe” it even exists. Most have no idea how to treat and many are unwilling to learn.
We desperately need awareness among the medical community.
The more we get our story in the newspapers and on tv stations, the more my email and voicemail box are flooded with parents who had never heard of the illness before but once they read the symptoms and criteria the more they are certain their child has it.
We need awareness among the parent community.
I see thousands of parents, myself included, pouring their hearts out on closed Facebook groups, desperately searching for answers. “It’s all Lyme!” some say. “No, it’s all strep.” “Does your child get red ears, leg pains, conjunctivitis? Who has experience with Dr. O? Dr. N? Dr. Q?” “He’s awful!” One says. “He’s the best!” exclaims another. “He’s no longer taking patients.” Someone chimes in as if that’s fact. While another quickly comments, “Really? I just got on the schedule earlier this morning.”
We need answers.
PRAI’s mission is to advocate on behalf of families suffering from PANS & PANDAS by increasing access to care, raising awareness, and fundraising for research.
While our community desperately needs all of the above, PRAI got started because we wanted answers.
The other day I met with John Siddall, CEO of Siddall Communications, an award winning communications firm specializing in PR, social media, and advertising.
Many years ago right out of college I used to work for John. I asked for a meeting to see if he could help me identify how to communicate our message with the world. How do we get folks to join our effort to get to the root cause of our kids issues? When asking about the background of PRAI and PANS & PANDAS in general I bent his ear for almost 2 hours discussing how PANDAS was first discovered by Dr. Swedo at the NIMH, I told him about the PANDAS Network and Diana Pohlman’s pioneering effort to advocate for families before Facebook even was around. Something I can’t even possibly wrap my mind around today. I told him about the great work of the PACE Foundation and the first Center of Excellence at Steele Research Center, Wendy Nawara getting insurance coverage in Illinois, I told him about having no codes, and our legislative advisory council, and our fundraising walk and the My Kids Not Crazy documentary and VA Film Festival and on and on with every detail so he could help me craft my message.
After rambling on like the queen of England for almost 2 hours I took a breath. “So, what do you think?” He paused and then drew a small circle. Then another circle around that circle. Then another circle around that circle. I knew immediately where he was going because I had just watched Simon Sinek’s video on Youtube the night before discussing his top selling marketing and leadership book “Start with Why”. He said, “I’ve heard a lot about your how. And a lot about your what. But I haven’t yet heard about your why. Why do you do what you do?”
I sat there a bit confused. Kinda thinking, “well duh, I want a cure for my kid.” But something about my seemingly obvious answer was nagging at me. When my son D was first diagnosed with autism at age 3, I didn’t start an autism charity. So why PRAI? Why when we realized our son had PANS & PANDAS and not autism did I start this non-profit in the first place?
Why was I doing what I was doing?
It’s been almost 2 weeks since John asked the question. And I’ve really been giving it a lot of thought. And here’s my answer. I believe, that the love of a parent is so incredibly great that we can actually do something about this disorder. I believe, that on all these boards, among all these suffering parents, the answer lies WITHIN US. With autism, I guess I was convinced there were already folks on the case. Someone was already pouring millions and millions of dollars into the disorder. But with PANS, there was no unified effort to find a cure. And I believe, deep within my center, I believe our community has the power to actually crack this case. And quite honestly, I believe we will.
I also believe that if we don’t own that responsibility, our kids don’t stand a chance. This week in speaking with Dr. Jonathan Kipnis one of our scientific advisors at UVA I was telling him about some theories I had about the origin of PANS and how I came up with those theories from data mining on Facebook and how my suspicions were validated after attending the Columbia conference where a Turkish researcher discussed MBL levels, connective tissue disorders and sickle cell. All the same areas I was pursuing as possible causes of PANS symptoms. He didn’t call me crazy. He said if someone published research on them he’d be intrigued, but that I could never test them out myself despite my making connections by interviewing parents. “You’d need millions and millions of dollars. You need the NIH to do that. You only have $150k dollars. That’s nothing. Universities need to do studies on MBL and the full complement system, Mincle, Fungi, Genetic studies, microbiome studies, you’d need all the different areas publishing in high impact journals and it’ll be years and years and millions and millions. That’s just how science works.”
I left there sure of one thing: Science doesn’t work very well. How is it possible that through Facebook polling I was uncovering MBL deficiencies and making links to sickle cell and connective tissue disease and this is just now being shared at a neuroimmunology conference at Columbia University? I had to learn that there was an innate immune system and an adaptive one 3 months ago. I started from knowing NOTHING and had, on my own, with the help of parents on Facebook found these commonalities with no scientific background whatsoever. I couldn’t tell if I was excited or totally disheartened by this.
I came home and told my husband, “I want to do it differently. I want to do this ourselves. I want to hire an immunologist and PHD students and say “read this pack of scientific journals and explain them to me so I can understand” I want to pull data from FB groups, share our labs with one another, ask our doctors to do tests we think may be relevant, create our own biobank, even if very small to start out and start to put this puzzle together OURSELVES!” I told him that I knew how crazy that sounded. That not only was I saying I wanted to start a non profit for a rare disease, but I want to actually lead the research agenda based on what the community finds relevant instead of hand it off to scientists who are all in their separate silos with their limited perspectives and unwillingness to share. “There’s no one at the hub of all these spokes in this wheel!” I yelled in sheer frustration. Why doesn’t the neurologist talk to the psychiatrist? Why doesn’t the dermatologist speak to the immunologist? These families are having all these random symptoms like retina problems, skin problems, liver problems, all these organs are being affected and when I look online there’s thousands of studies that are suggesting this or that is happening but no one is putting them all together. Why is there no doctor or scientists at the center of this? Instead, there’s just scattered puzzle pieces everywhere?! WHO IS GONNA BE RESPONSIBLE FOR PUTTING THIS PUZZLE TOGETHER!?!”
I had answered my question.
What’s our why? What do we value that drives our what’s and our how’s?
PRAI values the intuitive power, drive, and ability of a mother, desperate to find answers for their sick child. We value doctor’s and scientists, but not the scientific process. Our why is because our kids don’t have a lifetime to wait for a broken system built on competition instead of collaboration to find answers to our kids complex medical issues. It is up to us, whether we like it or not to take this responsibility on. To do it differently. Let the scientific naysayers beware; the love of a parent is far more powerful than 50 million from the NIH. Although we could certainly use a couple mil to get us started.