The Stilling Family

First-Ever Grandparent Break-Out Session

Pauline Lenz, A.K.A. “Ninja Nana” on the First-Ever Grandparent Break-Out Session

Cure JM 2013 Annual Conference and Fundraiser Recap

We had 18 grandparents in the session, and each one was there because they wanted to learn how they could help other grandparents get involved. To say we accomplished that is an understatement! The ideas just flew back and forth across the room, and each person had not only things to say, they also had that desire to help! BINGO!! SUCCESS!! It’s a good thing Mitali was there to take notes, after a while I gave up and just listened.

What I wanted to know was what could we do to get grandparents the help they needed, so that we had a “Nuclear Family Support System” for each child. Something we have done with my daughter Leesa and our grandson Kinser. In fact, we are like the Walton family because we are all in this together to make it easier on Leesa. We each have a specific role which helps keep things organized. My role is to do what I can to raise awareness and funding for research; my son’s roles are to be the best male figures in Kinser’s life; and Bill, along with my ex husband (yes, we have remained friends) Bob have the duties of grandfathers who teach him about life through their own experiences.

Coming Soon: Grandparent Brochure in Welcome Packet!

What did we all come up with? The main thing we discussed was that we all need to learn as much as we can about this disease as possible, so we can understand the ups and downs of it. With knowledge comes power and strength, along with figuring out where we can help. Think about it, when you went to school it was the best way to get to the end result of finding answers.

This is the same thing; we all need to learn the causes/symptoms/treatments/research of JDM to better understand how to help. To do this, our job at the Foundation is to give you the tools to accomplish this. I highly encourage you to spend some time looking at all areas of the Cure JM website as it’s the best site to get accurate information. Along with this, we decided it was time to put together a brochure, to include in the Welcome Packet you all received when you registered, along with putting it on the website. We are utilizing the attendees of the session to do this. In fact, we already have a rough draft put together; grandparents react quickly when we all have the same goal!

I would love to hear your ideas and stories telling me how you are involved, and specific things you do to make your sons/daughters journey with JDM a little easier. Please feel free to , so we can share these ideas in future newsletters. Who knows, I see a “Cure JM Ninja Nana” blog in my future!

Conference Recap Links