Advocacy Spotlight: Gabriella True

This is the first of a series of interviews with influential PANDAS/PANS and Lyme advocates. How do they DO it? How do they contend with their own challenges as well as day-to-day life and advocacy fatigue? What can we learn from these incredible people?

From the hearts of some of the most resilient, hard-working, wanting-to-make-a-difference warriors... I introduce to you: Gabriella True, ASPIRE President.
 

In Gab's words:

The day we suspect something is going on with our kids or ourselves is the day we become advocates. We may start simply by advocating for our families and ourselves, but we are also advocating for anyone else in our shoes. Sharing our experience and working on receiving more or better help only improves outcomes for those who come after us. The key to my resiliency is simple. I take energy to advocate from the journey; I start each day reflecting on all I have gleaned from my experiences while remembering our community's collective needs and using them as my spark to roll up my sleeves and get to work.

How many years have you been a warrior?  

One son has needed special care since birth, then diagnosed with autism and later PANS. Another son has PANS, as do I. We all exemplify how PANS PANDAS is essentially a spectrum disorder; we have similar core symptoms and triggers, but how they present varies. So, if I start my advocacy journey from the day they were born, I have advocated for 17 years. I started volunteering for TACA to support families about 14 years ago, and I have been involved in the PANS PANDAS community for at least ten years. 

What have you done to advocate?  

I began just helping out at TACA (https://tacanow.org/) meetings and conferences. Then I became a parent mentor through TACA's incredible mentor program. Also, my friends and I wanted to do more, so we would organize parent nights out and playgroups for the kids. Those were not just about letting off steam; we would pour through IEPs, compare treatment plans and discuss ways to get more services. Not only did I make life-long friends who keep me from sinking, but also I learned a lot about advocating for better services and better treatments. After moving from California to Connecticut, I became a TACA chapter coordinator. At those meetings, I met many PANS PANDAS parents since there is often an overlap between autism and PANS. Through this parent network, I said yes to helping out with light paperwork for a PANS conference, and in a blink of an eye, I was on the board of NEPANS, serving as president for about 5 years. 

Now, I am president of ASPIRE - Alliance to Solve PANS & Immune-Related Encephalopathies (https://aspire.care), a national PANS organization. ASPIRE is essentially a result of several regional organizations coming together with the shared goal of empowering all impacted by PANS/PANDAS to improve the lives of children and adults affected. 

What changes would you make if you were to do it all over again? 

Looking back, I would not really do things differently. Each step is part of the learning process. Along the way, I met people who have become part of an incredible community we are building; they have impacted my choices, vision, and how to get there. 

What part of this has been the most exhausting for you? Also, what advice do you have on how to keep going? 

The most exhausting part is balancing personal family struggles with PANS and continuing to find time to advocate. Psycho-social stress, especially in the presence of an infection, is one of my most consequential PANS triggers. So when one of the kids is flaring or, in the case of one son, in a chronic/static state, I have to keep protecting myself from flaring. I know a lot of people bristle at the mention of self-care. And trust me, I understand the reaction we often have, "I don't have time for that." I am not actually good at self-care in the traditional sense of leaving the house to exercise or have fun dinner dates with friends. But I have found some outlets that are not PANS or autism related, which have been very good for my mental health (playing video games and watching shows with a small group of new friends). I often say to overwhelmed parents find at least 10 minutes of pure joy a day in which this devastating disease is not at the forefront of their consciousness. Yes, it is always there, but take 10 minutes to remember you have the ability to have joy. These ten minutes is perhaps the only self-care we can get into our day but do it.  Your moments of joy have no rules; do what you like.

My work with ASPIRE and TACA is what keeps me going. So if I am having a rotten day, I take my own advice and rest. If I have a great day, I work my butt off, and I may work into the wee hours of the morning. If I am having a so-so day – you know those days – you are watching your kid – will this be a rage day? Will this be another no-school day? Will this be a day that makes me nervous about the rest of the week? You all know those days. So on those days, working makes me feel at least I am getting something accomplished, at least I am helping someone, at least more people will understand OCD and the other symptoms better, at least we are shortening the gap between the onset of symptoms and access to care. But, of course, that gap is still too wide, so we keep advocating and raising awareness while supporting the community; that work is never complete. Supporting the community reenergizes me. 

I love the community; they're my closest circle of friends. They bring me to my biggest suggestion on how to keep going, which is extremely simple. Connect.  I am not saying everyone needs to be an advocate (we always welcome more volunteers). But just connect. Know you are not alone. Yes, you are alone in your house when your kid is spiraling in an OCD, anxiety, rage episode but take a breath; remember, we have been there in that exact situation, and there is more than likely someone feeling the same way you do at that very second. We keenly know how stressful it is. So get on Facebook and say – "omg, I know I am not alone, but could you all remind me that I am not alone?" Share your story. Get on a zoom support call when we have them and look forward to the day when we can do them in person. Even if you have to drive an hour or so to meet some of us for coffee, it is worth it. 

Connect. It fuels me, and maybe it will fuel you too.

My second bit of advice on being a resilient advocate is to expect change to happen one small step at a time. I go by the tenet that education and awareness that affects change typically happens one person at a time, coupled with the sales marketing concept of "The Five Touch Rule to Engage Customers." Essentially, one needs to connect with a potential client at least five times before they pay solid attention to a new product. So, if we translate this to PANS PANDAS, I assume someone has to see something compelling about this relatively newly identified disorder at least five times before they say, "fine, tell me a little about it." These principles help me think about how to approach educating people on PANS PANDAS and how not to get discouraged the first few times something doesn't work out. For example, if a legislative session does not result in mandated insurance coverage, I take solace in the fact that we have put PANS in front of a handful of people at least once or twice in the process. As a result, they know more than they did the day before. Will we stop there? No.

And one more thing. Get good headphones and a great playlist that you can dance to in your room while working. I am dancing right now in my bed, singing on the top of my lungs while my darling dog stares at me.  

Go out there, advocate for yourself and others, one step at a time, one person at a time. Tell your story. Tell our communal story. Connect. Educate. Repeat. 

Gabriella True

ASPIRE, President

TACA, Connecticut Chapter Coordinator