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Meet Karly


Lois' daughter, Karly, faced many challenges because of Rett Syndrome, but she lived a rich, beautiful life.  Her loving heart lives on through the words and music she left for us, which have touched many people around the world.

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Blog: Spirit Dances

Karly began writing her blog, which she titled "Spirit Dances" in 2008. From that time until her passing in 2012, she used the blog regularly to share her thoughts on living with disability, the importance of communication, music, and spirituality. Her blogpage continues to be visited daily by people worldwide.
Visit Karly's Website

Music: In My Own Voice

Karly released a CD of her original piano compositions in 2010. Written with the help of her music therapist, Karen Bohnert, who developed a way for her to compose the music she held in her heart, by choosing one note at a time. The album beautifully reflects 10 years of painstaking effort.
Visit cdbaby

Other Writings

Karly made it her mission to use her voice to help other girls living with Rett Syndrome by sharing her story with various organizations and communities.

Read Karly's bio at GirlPower2Cure
Read her contribution to Minnesota Women's Press


Finding Her Voice from Tim Grossklaus on Vimeo.


"Please don't let Rett Syndrome be the only thing said of me.
​It's part of who I am, but it's not all that I am.” 

- Karly

Available for speaking Engagements, consultation & Collaboration

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