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But I'm Just...

Mon, July 06, 2015 11:38 AM | Anonymous member (Administrator)

By Amy Van Bergen, Executive Director of Down Syndrome Association of Central Florida

But I’m just a mom. I’m just a volunteer. I’m just a [accountant, lawyer, teacher or other fill-in-the-blank community member] and not a parent of a child with Down syndrome. I’m not a numbers person. I don’t ask for money or understand budgets. That’s someone else’s problem.

We are all “just” something when it comes to our DS support groups. But we need to embrace who we are, what we bring to the table and not belittle our own role and responsibilities by thinking of ourselves as “just” anything or anyone. And regardless of our skills (or lack thereof), we have to stop passing the buck to others.

There was no one more ignorant about Down syndrome than I was 24 years ago when my son was born. And just like so many of our families we serve, I learned. And when, after an extensive interview process, I was hired in 2002 as my local group’s first executive director, I felt like an imposter. What did I know about running a nonprofit? And so I learned. I went to classes and workshops and relied on some experienced mentors. It was all about what we call professional development. It was learning, plain and simple.

To me, that’s what DSAIA is all about—learning to be better, for ourselves, for our organizations, for the individuals and families we serve and for the Down Syndrome Movement itself.

Decades ago there were very few DS support groups around the country. Now there are an estimated 200+. Just like the people we serve, we don’t all look alike, sound alike or act alike. But like nonprofits everywhere, we have an obligation to our donors and those we serve to learn….and keep on learning.

Ignorance is not an excuse for treating people with Down syndrome as second-class citizens (or worse.) It’s also not an excuse for allowing others to mismanage our organizations. We owe it to ourselves to run our nonprofits as professional and ethical organizations. We owe it to our donors and families, too.

Many of us and our fellow board members, staff and volunteers came to our organizations with little experience in the world of nonprofits. So we owe it to them to provide those learning opportunities and to confess our own areas of ignorance.

So what are YOU going to do this week to bring learning opportunities to yourself or your fellow leaders? Are you participating in a webinar or signing up for a local philanthropy or foundation center workshop? Joining a local or national leaders’ circle? Seeking out someone who will formally mentor you? Because no matter who you “just” are, the buck stops here, with you. Today.



I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio

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Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. Learn More

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