I’ve been a volunteer committee member of the Upper Midwest Region of the Williams Syndrome Association since 2012, and in December 2020, I became the Upper Midwest Regional Chair.

In November of 2022, I was offered the role of Director of Family Support for the Williams Syndrome Association. In this capacity, I’m able to help individuals and families all over the country (and sometimes the world) find resources and connect with other families on similar parts of their WS journey.

We work to help families navigate the early days of the diagnosis of this rare, genetic condition. We also provide resources to doctors, programs and other activities.

One thing on which we work very diligently is awareness. Most people have never heard of Williams syndrome, so a great deal of work is just bringing awareness and fundraising for programs throughout the year.

May is Williams Syndrome Awareness month and for the last 3 years, I have organized the lighting of the Lowry Avenue Bridge in Minneapolis to be lit in the WSA colors.

For more information about Williams Syndrome, click here, or click here to contact me!