Archive for September, 2015
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Gina Szajnuk’s Google Gmail account was HACKED. PLEASE do not open the “PrivateDoc.” Rare and Life is Not Fair x3
Gina Szajnuk: I am not saying, “Poor Me.“I’m not saying that at all! I’m actually to the point of saying, “Bring it on. Keep it coming.” And, as a friend...
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
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...
Brittany Stangley: “We were given this life for a reason.”
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...
Matthew Webster, Ciara’s husband, shares about his experience at the RUN Day Without Doctors hosted by the National Ability Center
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...
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!
Epilepsy Association’s upcoming event – the Black and White Community Service Awards Ball
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!
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,...
Hailey Sampsel speaks out tonight and shares her side of the journey with POTS
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...
RUN Day Without Doctors hosted by the National Ability Center tomorrow!
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...
Amy Sampsel shares her journey with her daughter, Hailey. POTS and much, much more…
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...