2020 update because it’s been awhile…

During this pandemic we have felt many emotions. The one I didn’t expect to feel though was excitement! Although we have had our lows, especially during the beginning of the schools shutting down, we have had A LOT of highs for our little family.

*Audrey continues to make gains despite being able to attend her programs in person. We have an AAC device (finally)! So lots to learn in that department. And of course she’s making huge strides towards independent walking. I’m blown away by her resilience daily and I am learning to manage the stress of wearing the “therapist hat” much more frequently. The days are long and honestly exhausting but we get through it and start fresh the next day!

*We also bought a new home that is better suited for Audrey with more opportunities within the school district long term. We love our neighborhood and definitely feel like it is our “forever home.”

*I was asked to be a board member for a new CASK Gene Foundation. I’m so excited for this foundation for many reasons but mostly because it’s going to be a phenomenal resource for newly diagnosed families. This is something I would of loved to see in my early days of horrific google searches. I feel so grateful to be a part of it all and look forward to what it could mean for the future of those affected by CASK.

As part of the introduction of this foundation being launched, each board member was asked to write their reason “why” they are part of this amazing new foundation. If you haven’t already seen it, please go to and follow our CASK foundation Instagram and Facebook pages. And if you are wanting to learn more or have the means to donate, check out caskgene.org

I hope you all are finding ways to stay sane and healthy during these crazy times.

We are, as always, continuing to #kickCASK.

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