Join CurePSP and Jan Appel for Ken’s Ride: A Ride of Hope, a Virtual Ride on the Missisquoi Valley Rail Trail in St Albans VT from May 1 – May 31, 2021. Register here and ride or exercise wherever you want throughout May 2021, logging your activities until you get to the end. If you are unable to join us, please help us spread the word about the event and help us to raise awareness of Prime of Life Brain Diseases including Progressive Supranuclear Palsy (PSP), Corticobasal Disorder (CBD), and Multiple System Atrophy (MSA).
My husband, Ken. who was a dedicated mountain bike rider who rode the Rail Trail daily, passed away in 2018 from the progressive neurodegenerative diseases of Progressive Supranuclear Palsy (PSP) and Frontotemporal Dementia (FTD). CurePSP offered amazing support to Ken and our family throughout his illness. Your support for this event will help continue CurePSP’s mission of care, consciousness, and cure for prime-of-life neurodegeneration for others and their families.
Prime of Life Brain diseases are rare, striking when it is least expected, afflicting people during their active years and leading to debilitating symptoms and early death. These diseases are characterized by progressive personality, language, and motor decline. The symptoms of these diseases are incapacitating and create a level of functional impairment that significantly compromises a person’s ability to carry out the activities of daily living. Although symptomatic treatments exist, there is no known, cure or effective treatment, only hope.
Rare diseases impact everyone in some way. Virtually everyone knows somebody who is battling a rare condition. Support for rare diseases such as PSP, CBD, and MSA not only benefits people afflicted with them but also others with other rare diseases and those with even more common diseases. The knowledge and resources gained through research not only can lead to cures and treatment for specific diseases but also can lead to improvement in our health and caregiving systems. Prime of Life Diseases are not a single brain disease but rather a family of brain diseases Research has shown that there are important links between Prime of Life Diseases such as PSP, CBD, and MSA and the more common, better known neurodegenerative conditions such as Parkinson’s and Alzheimer’s.
Finding the cure and treatment for PSP that Ken had hoped for could lead to cures not only for PSP but other neurodegenerative diseases. Finding ways to support families and caregivers could lead to new resources and better ways to improve care for the patient and family that might benefit others suffering from other well-known chronic, debilitating and terminal illnesses