I had the enormous privilege last year in Pittsburgh to speak to a group of parents, doctors, volunteers, supporters, and advocates. I enjoy adding value to people who add value to others.
Now you may be wondering what does advocating have to do with me. As I have had the opportunity to learn and understand the meaning of advocating, I am convinced more than ever that it applies to all leaders.
My leadership journey has presently taken me to sit on a board of directors as president for the PFIC Network. A bit of my story, I woke up one day, my second son was 6 months old at the time and had to be taken into the hospital. We soon found out he had a rare disease that would change our lives forever. A journey began that at the moment has no end in sight. A life full of hospital visits, medication, and the possibility of liver transplant if we don’t find a cure. From one night to the next I would be putting on an advocate hat.
I’m the father of a rare disease son and I get to work with amazing advocates. This is what I have learned and shared at the PFIC Network Conference.
The heart of an advocate begins with the idea of coming as you are. You don’t have to be put together, have all the answers, or be qualified. This is the thing, come as you are but don’t stay as you are. I encourage you to embrace the call and seize the moment. You are where you are for a reason and there is no accident about that.
I’m reminded of a quote I have on my wall that says
“If you can’t change the cards you’re dealt change how you play your hand”
You see I didn’t grow up at home with pictures on my wall dreaming to be an advocate or dreaming about sitting on the board of directors for a rare disease organization. But here we are.
So what is an advocate? One who pleads the cause of another.
In Greek it means – Helper, Advisor, Counsellor, to offer support and help.
In Latin it means – to add a voice of support to a cause or a person. To aid, to plead, a lawyer would be an example of this.
In it’s truest form this word comes alive when you help someone else.
The work that I do with the PFIC Network may not directly affect my child, but my view is that if someone else’s child wins, we all win. We are trying to create a ripple effect.
So how do we come as we are and still advocate and become people of influence?
I have a few thoughts from a parents perspective and I hope this encourages you on your journey.
- Love yourself -Take care of yourself. You are doing a great job.
- Love your spouse or significant other. Work to be on the same page.
- Love your family. Love your kids.
- Love your community, close family and friends. Embrace the PFIC community.
- Love your journey. Learn to celebrate.
Take ownership of your life. This might have happened to you but it doesn’t need to happen in you.
There is a story of a young Jewish girl that lived a long time ago. During her time she lived through a lot of hardships. A king ruled over her people as they were a minority at the time.
Through a sequence of events she was able to enter a beauty competition the king was holding to find his new queen. This young woman won the competition and became queen. Being in such a high position gave her the influence to be a benefit to her people. But she was having a challenge stepping into her new position until her uncle said to her, you have been called. You need to be an advocate for your people!
“And who knows but that you have come to your royal position for such a time as this!”
Maybe you need to hear that today. Doctors, researchers, parents, families, friends, volunteers, staff; Your work matters and you have been called for such a time as this!
There is an advocate inside each of us. I think if we take a pause and look around we will realize that if we advocate for one another we will make the world a better place.
Walter Perez – Founder/CEO – The Leader Co. Inc.