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Pat Clementz-Peterson

The Michael and Patricia Clementz-Peterson Family Fund has supported NAF in many ways throughout the years. Since 2017, they generously pledge to match donations made to NAF’s Summer Match Challenge. The campaign has helped raise more than $1 million to-date. We asked them to tell their story.

Pat's Story

Our foundation was primarily established with the purpose of contributing financially to SCA3 research. We started as the Clementz Family Foundation in May 2005. Three years ago when it became apparent that all four members in Pat’s side of our blended family carried the SCA3 gene, we changed the name to the Clementz-Peterson Foundation. We wanted to ensure that our donations would continue after we were gone and that research for neurological diseases, predominantly SCA3, would eventually bring relief and hope for this painful heartbreaking condition.

We are grateful for NAF and their dedicated staff and volunteers. We also are very thankful for the scientists and researchers worldwide and participants who give so much in order to discover life-saving knowledge of this debilitating disease.

I was a young college student when I met and married my first husband. We raised our family with love, faith, and much pride. Our dreams for our lives were like those of so many others – you worked hard, and with God’s help and direction, anything was possible. We knew next to nothing about neurological diseases. We were not aware of health problems in my husband’s family, except for his mother and her sister who were though to have arthritic conditions. Then came the awareness of the double vision and balance problems. Dr. Bird of the U of W became our first medical contact. He was steadfast and invaluable support for many years.

Eventually, my husband could no longer work as an architect, but he was able to pursue other projects, despite his decline in physical abilities.

At that time, there was so much that we didn’t know about Ataxia. I believe it wasn’t even until the 1990’s that more SCA genes were being discovered and named. My mom thought that with my “good genes,” my kids would be protected from inheriting the Ataxia. Unfortunately, we were naïve and now have learned otherwise and so much more.

Mike and I have been married for forty years. He has been my ultimate support. Together it has become our shared lifetime mission to help those who struggle physically and suffer so much. It hurst to see the difficulties and pain our own loved ones face day and night just to even do simple movements that healthy people can take for granted.

Our daughter passed away in her early 50’s after a courageous battle with Ataxia. She had a “sunny” disposition and was “full of faith” with God’s grace always in her heart. One of our most joyous and thankful times was hearing from her sons when they announced they were tested for “the gene” and that they did not have the disease and that the babies their wives were expecting would be healthy. Those were praise God moments with lots of tears of joy!

Of course we pray for helpful discoveries – hopefully sooner than later. Our donations will continue in support of this most important mission.

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I got diagnosed at 40 after always walking awkward and 2 years of being unsteady. Now I’m going to start physical therapy and apply for SSDI. It’s sad for me, Read More…

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When Charlie Ruehl was in high school, his mom Susan recalls he would always miss the same step at the bottom of their staircase. She chalked it up to him Read More…

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