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“The Light in the Darkness” by Kathleen Anne

July 10, 2017 8:24 pm

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There comes a time in your life when you have to sit back and watch how quickly the world is spinning around you. You stop, as everything is...

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Szajnuk’s Next Chapter: Moving on from the Milwaukee Bucks

June 16, 2017 4:01 pm

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It was such an honor to be a part of the Milwaukee Bucks this past year. It was a dream come true to be back in Wisconsin and...

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Still Living in the Unknown: Happy 10th Birthday Ava Szajnuk!

June 4, 2017 10:37 am

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We are celebrating Ava’s tenth birthday today! I remember the feeling I had the second I found out I was pregnant with Ava. I waited for years to...

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Devastating Diagnosis: Rachel Nielsen’s Letter to her Brother

June 1, 2017 10:35 pm

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Hey Bro, I know writing letters and sharing sappy sibling moments together isn’t really our thing, but I felt I needed to address something that is happening in...

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Today is Undiagnosed Day! Join Us to Honor the Undiagnosed Rare Disease Community

April 29, 2017 10:01 am

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 All rare diseases were once Undiagnosed.  What does “Undiagnosed” mean? “An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation.” Undiagnosed Disease...

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Undiagnosed: An Update on the Szajnuks

April 27, 2017 5:31 am

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Anyone living with an undiagnosed disease knows how hard it is every single day to persevere. When the disease is invisible, it is even harder because you have to...

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RUN’s NBA Initiative: NBA Teams to Host Rare and Undiagnosed Families!

April 12, 2017 2:40 am

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RUN’s NBA Initiative is growing in 2017! NBA teams: the Milwaukee Bucks, the Utah Jazz, the Phoenix Suns, the Washington Wizards and the Boston Celtics are already scheduled to host rare and undiagnosed families in...

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The Undiagnosed Alliance: Mission and Goals

April 6, 2017 9:49 am

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The Undiagnosed Alliance (the Alliance) is a coalition of undiagnosed rare disease stakeholders coming together with the purpose to foster unified advocacy among patient organizations, individuals, and stakeholders...

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Taylor-12q14.1 Microdeletion Syndrome

April 1, 2017 3:36 pm

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Taylor-age 3 Diagnosis-12q14.1 Microdeletion Syndrome Photographs were donated by Season Atwater of Aware of Angels.   This story first appeared on Aware of Angels.  Our little guy Taylor...

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Face to face: A Fairy-tale by Greg Lopez

March 30, 2017 3:57 pm

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Face to face: A Fairy-tale by Greg Lopez   Face to face. ​​Awestruck! As the saying goes, a picture is worth a thousand words. But it is also true that...

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