Progressive Supranuclear Palsy (PSP) is an uncommon brain disorder that affects movement, control of walking (gait) and balance, speech, swallowing, vision, mood and behavior, and thinking. The disorder’s long name indicates that the disease worsens (progressive) and causes weakness (palsy) by damaging certain parts of the brain above nerve cell clusters called nuclei (supranuclear).
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Who We Are!
I started PSP Awareness to help support & spread Awareness throughout the communities and in the medical field for Progressive Supranuclear Palsy (PSP) and rare diseases. My Mom Coleen Cunningham was officially diagnosed in late 2018 with PSP after being misdiagnosed for a couple years. We can track symptoms as far back as 2015 in retrospect. My mom rapidly progressed after official diagnosis and unexpectedly but peacefully passed away in her sleep on May 18, 2019.
We struggled to find resources and supports for this rare neurological disorder and not many doctors or specialist we saw had even heard of it, 1 out of 10. It was very frustrating and discouraging for all of us. I decided to make it my mission to find and provide the best care and resources for my mom, and I am now passing along my knowledge and experience in hopes it will help others! We have started to make some noise online and bring awareness and much needed attention to these rare diseases. Our Goal is to reach and support all those suffering and in need of support throughout our communities with PSP/MSA/CBD and other rare diseases. We also spread awareness and information to medical professionals about these diseases.
There is no known cause, treatment or cure - YET!
Help us change that!