Julian Elofson - Corticobasal Syndrome Support
Donation protected
In January of 2018, Duane Elofson was diagnosed with a rare neurodegenerative disease called Corticobasal Degeneration (CBD), in which normal proteins (tau) detach from the brain cells, forming clumps that cause parts of the brain to atrophy and die. At the time our father was diagnosed, the neurologist at the Mayo Clinic made it clear there was no cure, nor any medication that could slow down the progression of the disease.
Fast forward one year, and the University of California San Francisco is conducting the first ever clinical drug trial for the treatment of CBD. Duane applied to be a study participant and was accepted in July. While researchers have made it clear there are no guarantees of any positive outcomes, what we do know is that if Duane does nothing, over the next 4-8 years he will continue to lose the use of his limbs, his speech, and his ability to swallow.
In order to participate, however, Duane and a study partner will need to travel to San Francisco a minimum of 10 times over the next year. The study only provides a $400 stipend per trip, which will cover the cost of airfare for one person, leaving Duane and his family to cover the second plane ticket, as well as food and lodging and other related expenses in a very expensive city. At a minimum, this means finding another $1000-$1200 per trip.
Not only does participating in this first-of-its-kind clinical trial give our father the possibility of living a longer, healthier life, it will also help researchers learn a whole lot more about neurodegenerative diseases like CBD, so they can hopefully, eventually, find a cure for them.
Thank you.
Fast forward one year, and the University of California San Francisco is conducting the first ever clinical drug trial for the treatment of CBD. Duane applied to be a study participant and was accepted in July. While researchers have made it clear there are no guarantees of any positive outcomes, what we do know is that if Duane does nothing, over the next 4-8 years he will continue to lose the use of his limbs, his speech, and his ability to swallow.
In order to participate, however, Duane and a study partner will need to travel to San Francisco a minimum of 10 times over the next year. The study only provides a $400 stipend per trip, which will cover the cost of airfare for one person, leaving Duane and his family to cover the second plane ticket, as well as food and lodging and other related expenses in a very expensive city. At a minimum, this means finding another $1000-$1200 per trip.
Not only does participating in this first-of-its-kind clinical trial give our father the possibility of living a longer, healthier life, it will also help researchers learn a whole lot more about neurodegenerative diseases like CBD, so they can hopefully, eventually, find a cure for them.
Thank you.
Organizer
Terri Elofson Bly
Organizer
Fargo, ND
