NBIA Board Intro

Ten years ago I would have described myself by what I do for a living.

I work with databases, helping large company manage their physical assets.

Today, my "Work" feels much more like a hobby. Sure, I spend a lot of time there, but even when I am at "Work" I am thinking about Josie, my family and PLAN, Josie's disorder.

Something that I didn't realize when we first noticed Josie's clumsiness was how big a part this would play in our lives. It started off so small, it was just some missed milestones and developmental delays.

Now at times, the basic things that we need to do seem ovewhelming. Just the effort of our daily routine can seem like a lot. Then there's the advocacy for medical and school interventions, additionally, the (thankfully) very infrequent Urgent Care visits

In our PLAN break-out session, earlier today, Pam pointed out that with every accomodation and intervention, you start out overwhelmed, but then get used to your "New Normal," and things you couldn't comprehend previously become run of the mill.

But there's also so much more that I want to accomplish. Unfortunately I don't have the time and expertise to pursue the advocacy and fundraising that our disease really needs.

This brings me to why I'm here. The NBIA Disorders Association helped my family by connecting us to useful information, other families, and researchers. I cannot over emphasize how important that has been.

I jumped at the chance to be on the Board of Trustees, when the opportunity came up, because this organization has done so much for us.

Being on the Board allows me to give back in ways that match my own abilities. Just yesterday, in the board meeting, we discussed a report that Colleen had put together. It had taken her a lot of time and effort because the information came from four different databases that were completely independent. And wouldn't it be nice if she could do that more easily.

Well it turns out that my expertise in working with databases may help with this particular problem.

This is just one instance of many times when I've been able to help or I've seen somebody else use their unique skills to help out the Board. The Board is full of incredible people.

When we share our own unique skills and abilities we are truly stronger together.