Meet the JSRDF Board! Conference and Brand Awareness Committees - Joubert Syndrome & Related Disorders Foundation
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This blog series highlights the JSRDF Board members and the committees they serve on. The JSRDF is a 100% volunteer-run nonprofit. Through the dedication of our hardworking volunteers, we are able to provide CARE: Connection, Awareness, Research, and Education to the Joubert Syndrome community. 

In this post, we will focus on the two remaining committees: Conference and Brand Awareness!

The Conference Committee coordinates everything about the biennial conference. They scout locations, price hotels and travel, find informative speakers – everything! The members of the Conference Committee are Jenni Swenson, Denise Mack, Jackie Olson, and Laura Soder.

Denise MackDenise Mack

Grayslake, IL
Mother of Isabella, 14 (JS); Christian, 9 (non-JS); Abigail, 7 (non-JS)
Board Member since July 2011

Favorite conference memory: My favorite memory at every conference is hugging the people I’ve grown to love over social media. We connect on social media over so many months, sharing fears, joys, and stories. Connecting face to face is remarkable.

Product I’d recommend to JS families: McClaren strollers were the best investment we made when dealing with a growing non-ambulatory kid. They are easy to travel with and handle most terrain.

Website or app JS families might find useful: I enjoy reading The Mighty. They share stories that are uplifting, but also share a perspective that reminds you that you are not alone.

What helps get me through tough days: My husband. Stephen and I have been through this journey together. He’s shared my passion to support JSRDF. We’ve used our mission to help us through the days we feel like it will never get better.

Parenting tips and tricks: My biggest tip is to try not to take parenting too seriously. They love you even when you worry you failed them.

Hobbies: Mostly working on projects at home such as rehabbing furniture, gardening, or redesigning rooms.

Favorite TV show: What Would You Do and Criminal Minds.

Something not many people know about me: I love to sing. It’s my escape from reality.

The Brand Awareness Committee designs, orders, and distributes all of the JSRDF merchandise. No small task! Anna Dietzen runs the Brand Awareness Committee.

Anna Dietzen

Anna Dietzen

Spokane, WA
Mother of Parker, 8 (JS); Lane, 6 (JS); Elyse, 4 (non-JS)
Board Member since July of 2017

Why I joined the Board: After attending our first conference in 2015, I felt a huge passion to get involved within our community. Having two children affected by JS, I knew I wanted to find a way to serve and make this community our home. I joined the board to do just that!

Favorite conference memory: When we arrived at our first conference I was terrified. I wasn’t sure what we had gotten ourselves into, and I was overwhelmed at the unknown. However, the entire conference was the best week of our lives. My favorite memory was dancing in the ballroom on the last night of the conference taking in the beauty of all our families, united by Joubert Syndrome and how perfect it all was. It was a night I will never forget!!

Product I’d recommend to JS families: Plasma cars and Micro scooters! Both are toys that all children play with, but they have been awesome for my kids to be able to use and still feel like everybody else!

Website or app JS families might find useful: I blogged about a lot of our early days in our unexpected journey of special needs, and it has seemed to be very helpful for those walking through the initial diagnosis and early years.

What gets me through tough days: When the days seem overwhelming I try to look back through pictures of when the kids were younger and see how far we have come. Sometimes it seems so hard because the challenges in front of us appear to be mountains, but when I am able to reflect on the enormous mountains we have already conquered, it helps to bring hope back.

Parenting tips and tricks: Date your kids! One on one time with each child individually is so important. And care about what they care about. Learn about their hobbies and interests so you can be a part of learning together.

Favorite TV show: Parenthood

Hobbies: Running and golf.

Favorite musical artist: Anything country.

I know all the words to this song: Whoomp There It is!

Something not many people know about me: I have lived in six different states!

Interested in getting involved with the JSRDF? We are always looking for skilled and dedicated volunteers: