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