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Lucy Szajnuk’s Dog Attack: Rare and Life isn’t Fair: Open Letter regarding a NO DOG policy on all Soccer Fields in Park City, UT

September 28, 2015 5:22 pm

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My role in life is to advocate for my three children that are currently living in the medical world of the unknown. Our family lives on the sideline...

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Brittany Stangley: “We were given this life for a reason.”

September 27, 2015 6:42 am

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Hello everyone.. my name is Brittany. I am 24 years old, married, have one child and I am currently living undiagnosed.. I wasn’t born this way, as far...

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Matthew Webster, Ciara’s husband, shares about his experience at the RUN Day Without Doctors hosted by the National Ability Center

September 22, 2015 11:21 pm

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Matthew Webster: I recently was invited to a RUN “rare & undiagnosed network” event September 12th with my family. It was a magical experience to see and speak...

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Thank you to everyone involved last Saturday! RUN Day Without Doctors Hosted by the National Ability Center! We have a ton of pictures to share!

September 21, 2015 1:58 pm

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Words cannot express how special last Saturday was for RUN! With the amazing generosity of the National Ability Center, we had a day of fun for our local rare and...

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Epilepsy Association’s upcoming event – the Black and White Community Service Awards Ball

September 19, 2015 9:57 pm

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Link to Epilepsy Association’s upcoming event – the Black and White Community Service Awards Ball

Pitt Hopkins Awareness Today. September 18th! Please watch their video. It’s extremely powerful. Please share to make more awareness!

September 18, 2015 10:26 pm

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I am Nicole Lenzen. I am the mother of a little boy with an ultra rare genetic syndrome, Pitt Hopkins Syndrome. When he was diagnosed three years ago,...

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Hailey Sampsel speaks out tonight and shares her side of the journey with POTS

September 12, 2015 1:11 am

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Hailey Sampsel: Hello! My name is Hailey, I am a chronic illness fighter! Before I became ill I was a competitive trampoline and tumbler. I went to practice four...

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RUN Day Without Doctors hosted by the National Ability Center tomorrow!

September 11, 2015 9:04 pm

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We are looking forward to a great time at the National Ability Center (NAC) tomorrow! RUN Day Without Doctors! September 12th:  If you are attending, please arrive at 1:30p at...

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Amy Sampsel shares her journey with her daughter, Hailey. POTS and much, much more…

September 11, 2015 1:43 am

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Amy Sampsel:  I am the mother of three girls.  My middle daughter, Hailey, has always been very athletic- climbing at a young age, great coordination and always wanting to...

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Gina Szajnuk: Praying to keep Ava safe as well as healthy. Thank you to kind strangers for your help last night!

September 5, 2015 9:55 pm

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Gina Szajnuk: Last night was supposed to be a very special night for Ava and me. Justin bought us tickets to the Taylor Swift concert at the Energy...

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