ADVOCACY SPOTLIGHT: Wendy Nawara

This is 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: Wendy Nawara, Warrior and Advocate.

 

How many years have you been a warrior? 

I have never really viewed it as a choice. I have been a warrior and advocate all my life, and thankfully had the most incredible role model in my mom. I grew up with a sibling with a genetic disorder that caused very poor health, intellectual disabilities, and autistic like behaviors specific to his syndrome. I actually can’t remember a time when I wasn’t being asked to speak with other children and adults on sibling/disability issues, or running the child care at major conferences, or attending special ed and social work programming to start my own career in advocacy. When my own children got sick, I can remember thinking, Ok, heeeere we go. 

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

Throughout my long PANS journey, I have experienced so many different facets of advocacy. My work has morphed from doing the work I needed to do for my own self-preservation while my three children were sick, to widening through volunteerism, the creation and leadership of non profit organzations, to once again narrowing my focus down to providing specific help to families and children. I have worked and continue to work on creating change for our families through building awareness; educating others; providing support to families both emotionally and financially; working with teams to draft and lobby state and federal legislation; and by always trying to bring people and groups together to make lasting change for this community. 

Now as an independent consultant specializing in PANS / PANDAS / AE, I am drawing on my years of experience in counseling, education, advocacy, and policy change to primarily focus on patient advocacy and health navigation for families. 

It’s really hard to say what I’d do differently if I had to do it all over. Of course I would wish that I had already learned the all lessons that I have learned over time. I would hope that that alone would cut the time it has taken to get things done for our families…but I don’t think I would change the process that I have sometimes inadvertently, and sometimes intentionally, endured. Every day I value the growth that I have personally made, and every day I am grateful for the things PANDAS taught me. 

What part of this has been the most exhausting for you? 

Knowing that the work does not and will not end. Understanding that when one goal is reached, there will be another closely following. But on the flipside, that is what keeps me going too. 

Also, I have some pretty consistent sleepless nights worrying about some of the families I know both personally and globally; knowing that the projects I have worked on might not help immediately. That sucks, but it doesn’t make the work any less important. It makes it even more important and totally worth doing. 

Any ideas as to helping advocates continue to be strong? 

This is the same advice I give to my clients everyday: Take deep cleansing breaths. Remember, it’s not personal. Take it moment by moment. Cry a little, or a lot if you have to, but don’t live there-Get back up and get back to work as soon as you can. You will prevail. But far and above all else, build your support system. Being able to form friendships and partnerships through advocacy is always sustaining. Support systems are so important for all types of advocacy work, as well as for all PANS families. No one likes to feel as if they are out there totally on their own. Some of the friends I have made on this journey are like sisters to me 

ADVOCACY SPOTLIGHT: A PANS Parent

This is 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?

This next interview is with a parent who has been championing legislation in her state. Due to privacy concerns, she wishes to remain anonymous.

Privacy is an issue for many of our advocates. Why? Insurance issues. Mental illness stigma. Families who don't "get it" and are unsupportive. Politics. PANS/PANDAS occurs in 1/200 of the population (at least) yet we see almost no celebrities advocating.

The following interview is with a parent who is upbeat and persevering. She is also angry. Legislation is HARD. I've seen it in my own state--you finally get insurance bills into the Assembly and the Senate and you need to educate the legislators...then the PANDAS parents ghost you. Where's the support? We need to stick together. 

Yes, legislation for insurance coverage for PANS/PANDAS is extremely challenging, but at least 8 U.S. states do have laws on the books. Illinois was the first. It's not impossible. Working relentlessly on legislation when you have one or more children at home with these diseases is extremely trying. 
 

How many years have you been a warrior? 

I’ve been fighting PANDAS with my child for 5.5 years now. 

This is my third year of legislative advocacy. 

What have you done to advocate? 

I hate my state. It seems to filled with narcissistic politicians who don't care about doing what is right for the people, but proving themselves and their own selfish opinions to be right to the people.  Instead of helping people, they are wasting time and money on petty partisan arguments.  We sit at the table and look them right in the face and pour our hearts out…. They tend to make you think they care. But, they don't. They only care about the big boys club and their own agendas.

What would help our cause?

If more constituents/parents would actually help DO the work. We've had parents reach out, wanting to "help"... But when they realize they aren't the ones testifying, or they aren't the ones who make the ultimate decisions due to political cautiousness, they don’t want to write flyers, or letters, or message other parents and do the little things that matter.  When we ask a group of over 300-400 parents to call specific politicians, and we make it VERY easy to access contact information, and we hear that only 10-15 people on a good day contacted said politicians- then we are all SENDING A VERY CLEAR MESSAGE.  The problem here in my state... Is that no one wants to do the work but wants our legislative advocators to give them these great bill-passing results. 

I get it, we all have "stuff" on our plates. We all have ill children. Careers and jobs. Families. And not much time. I don’t have time, and I'm doing a great portion of the work along with a few other fabulous parents.  It takes 5 minutes to call, email. We need the numbers of people to show up and help. 

What do you want people to know?

I wish someone would’ve told me before I began doing this that:

• politicians only care about what they want to care about. Period. Unless they are personally vested and have rank, your efforts mean zilch. 
• I wish someone would’ve told me how mean other PANDAS parents can be and downright unappreciative. Some parents have argued with us, tried to tell us we are wrong, barked orders at us. It’s a small few- but they can certainly make us all want to quit everything we are doing. A simple thanks can go very far. Be kind with suggestions and be accepting when we decline your suggestions - its not personal on our end. 
• I wish someone would’ve told me that I would be doing this for YEARS.

Advice to advocates (legislative or otherwise) to stay strong and steadfast: 

1. Take breaks

2. Self care is a must

3. Ask for help

4. If you need a longer break or "respite", take it. 

5. Advocates get sick too. Go to your appointments, eat well, enjoy life. 

6. Tap into your friend advocates from other states for help

7. Use your resource people: PANDAS NETWORK, ASPIRE, PPN!!! AND others....

ADVOCACY SPOTLIGHT: Jessica Gavin

 

This is 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: Jessica Gavin, Founder/Director of PRAI.

How many years have you been a warrior?

I officially started my non-profit work about 6 years ago.  But I feel like I earned the stripes of "warrior" since the day my son was born in 2011 and I had my husband follow the doctor into the circumcision area to make sure he was safe.  From day 1 Dexter had colic, food allergies, a birth defect and within days life threatening infections.  So I quickly became his advocate and leaned into other moms for support and as new ones came into the fold they leaned back into me. I was introduced to TACA in 2013 and learned what real advocacy was all about.

 

What have you done?

So there's probably a line where you don't want to sound like a braggart and be humble enough knowing how much more there is to do while also being true to the accomplishments you've made.  I'm crazy proud of my work, especially after taking a giant leap back from it.  I'm even more proud from where I sit today than when I was in the thick of it. So to answer "What have I done" in a nutshell, I feel like my greatest contribution has been helping other parents answer the question "What can you do when there's nothing you can do?" You can do something.  No matter how tired.  How strapped.  How depressed. You can do something. 

 

I had no background in advocacy or non-profit work. I was a recruiter and unemployed when I had kids.  So I didn't have any training or skills and abilities that made me able to start a non-profit and raise over $600k in 4 years.  What I had was a desire to kick this nonsense in it's teeth so my kids had a fighting chance.  I've raised a lot of money for research, helped start many hospital PANS programs, brought together other non-profits to play nice together, joined non-profits that were not my own knowing it was best for our kids to work together, and made some serious lifelong friendships in the process.  And of course our patient registry (pansregistry.org) with a strong focus on parent intuition where I was the principal investigator.  I'm crazy proud of that. I find the question hard to answer by just listing accomplishments even though that's what I've tried to do here.  I know it sounds trite but truly what I have done is give PANS parents a louder and more confident voice among medical professionals, researchers and even among their own families.  That's the thing I'm most proud of.

 

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

I would have been much braver from jump street.  My brother asked me one time early on in my advocacy work when there was some PANS parent drama, "Does worrying about what other people think hurt Dexter, or help him? Does it get you further or closer to your goal of healing your own son?"  That question hit me like a ton of bricks.  And it stayed with me every time something (or someone) stood in the way of the work I was doing. But not until recently have I really embraced it to its fullest.  I've always been the kind that hoped everyone would like me and be okay with the decisions I made. But I learned if you REALLY want to do something life changing, something that really makes an impact for generations to come, you have to put that goal above all your insecurities and fears and lay it all aside.  I wish I had learned that year 1 and not year 6.

 

What part of this has been the most exhausting for you?

Oh, man.  This question is going to get me a lot of haters.  But if I really meant what I said in the last answer, I should probably be honest here.  It's been the PANS community.  With that said, I understand it.  I get it.  I am part of the PANS community.  I have the same exhaustion, the same frustration with doctors, and the snail's pace of research.  But when you're in an advocacy role and you put your own family aside so that you can advocate on a larger stage, it's truly crushing when there's criticism with how you've done things, or not done enough things.  Or questions about why you drew a salary for your grueling non-profit work, or questions and doubts about your intent of your non-profit program when you know your own heart.  That's been the hardest part.  I remember one time being told publicly I was harming the PANS community by not saying IVIG works as a one and done because "insurance companies might be listening in." And after my own son had 6 IVIG's and only got worse, I asked myself "Who am I doing this for?" Because I knew if I spent one tenth of the time focusing just on him, he would likely be much further along than he was. But I chose advocacy.  And that stung.  A lot.  But, I'm not a victim.  I made those choices.  And I gotta live with them.  I also remind myself that the more I could push the disease forward, the better it would help him. And candidly, he really is who I am doing this for.

 

Any ideas as to helping advocates to continue to be strong?

YES!  My best and most honest suggestion is every single PANS parent is an advocate.  So when I answer this question it's not just to the non-profit leaders or the ones on the forefront of the legislative work or running the local support groups and writing kick ass blogs like this one....  It's to EVERY single parent with a child with PANS.  There's always something you can do.  You can give a kind word and lift up another parent, you can write a thank you note to a doctor who did well by you so the next child gets better care, you can do a birthday fundraiser, you can even just give a little heart emoji to the mom who poured her heart out on a FB group so she goes to bed that night knowing she's not alone.

 

To be strong, you just have to do something, keep moving no matter how small it may seem to you or anyone else.  Even if advocacy means kissing your husband on the lips so your marriage doesn't fall apart and you can be the best parents you can for your kids.  Strength isn't raising tons of money for research or curing PANS. It took me a while to learn that.  It's giving the best of yourself, and forgiving yourself in the times that you have nothing left to give.  Believe it or not, just surviving is a huge feat of strength sometimes.  So when you see all the "advocates" out there and wonder "How do they do it?", we do it just like you do.  One foot in front of the other, giving the best you can, and forgiving yourself when your best is not just losing your ever-loving mind that day.  

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

Advocacy: Fatigue & Inspiration

Photo by Julia Larson from Pexels

How many of you are tired? Of parenting, of constantly advocating for your family, yourself? Perhaps some of you have taken that advocacy to the outside world and helped to plan conferences or led support groups, etc.? Who are the heroes amongst us?

Look in the mirror now. 

If you’re the parent of a child with an illness, you are that hero.

Smile, give yourself a high five, a pat on the back, a lotta love. Because you rock.

When these diseases hit our family about a dozen years ago, I didn’t know many people who were also dealing with them. Online support groups connected me with amazing angels--and although I’m not religious, I think of them as angels. 

The woman who was studying to be a nurse who told me how to detox my child when the LLMD (yes, a Lyme Literate doctor) told me to go to a psych hospital for the horrible Herxheimer reaction to Babesia meds. At a time when hospitals were kidnapping children because their doctors didn't acknowledge neuroLyme.

The moms who always had a kind word and a sense of funny snark, who ended up becoming good friends (well, yeah, duh). 

The lovely lady who'd never met us yet gave us the use of a beach cottage so we could have a family vacation.

The gutsy women who joined with me to push for PANDAS legislation in our state.

These connections, relationships, friendships grew out of wanting answers and also needing to help others navigate this path without hitting the roadblocks we’d encountered. A sense of purpose drove me--how could I rise above this suffering to alleviate someone else’s pain? 

I don’t even know how to explain the intense desire to help someone else--it grew from wanting meaning in all we’d gone through to needing life's meaning in the world at large. 

Advocacy led to incredible connections, new friends who TOTALLY got me and understood everything I was going through. Advocacy led me to meeting strong women and men.

I started PANSLIFE as a means to express what I was going through and to offer help to others. One thing led to another. With a friend, I began an in-person support group. And that led to administering online support groups, helping with PANDAS conferences, helping four other women across the country to create the Lyme Disease Challenge, running the PANDAS table at Lyme conferences, writing articles about these illnesses, getting involved in my state’s PANDAS/PANS legislation, being invited to be part of my state senator’s Health and Mental Health Committee. 

At my sickest (with Lyme) I did the most with the Lyme Disease Challenge. As my health improved, I bicycled more and spent less time on the computer. I blog less now. With the pandemic, in-person support groups ceased. I don’t know that I want to take up those reins again. 

I’m tired. 

Not Lyme tired.

Not I taught-during-a-pandemic tired.

Not just-bicycled-50-miles tired.

Not I read-100-pages-of-medical-literature-tired when I’m not a doctor.

I still want legislation in my state (it died in committee this year, again). I desire that all doctors, school nurses, teachers and therapists know the signs of PANS/PANDAS and Lyme. I wish that all childen and adults have access to the proper healthcare for this disease (which doesn't only affect the pediatric population).

Will I be the one to do it? Don't know. Maybe it will be someone else. I have advocacy fatigue today. (But I also have teacher fatigue after this most unsettling year and yet I’m going back end of August). 

I considered writing a blog about just that--advocacy fatigue--then thought to ask the incredible advocates, both for PANS and Lyme, who are dealing with this as well. Change is slow, plodding, tedious. How do these people carry on? What propels them? 

Initially, I intended to create one article. But as the responses began to trickle in, I realized that each warrior has so much wisdom to share and deserves their own space. So this will be a series. From the hearts of some of the most resilient, hard-working, wanting-to-make-a-difference warriors to you, I bring you Advocacy: Resiliency. 

Check back for stories.