Please support EVA by sponsoring my effort to run the virtual Boston Marathon on September 12th. This 26.2 mile “run” will be difficult this year as I have a painful foot injury that will require surgery after I finish. The pain will be worth it if running this marathon helps fund needed EVA research.
What is EVA? Enlarged Vestibular Aqueduct (EVA) syndrome is a congenital form of hearing loss directly related to an enlargement of the vestibular aqueduct in the inner ear. EVA is usually diagnosed at a young age and is a lifelong battle. It is progressive and sadly most children lose some or most of their hearing by adulthood. Hearing aids or cochlear implants can help, but unfortunately they are not cures. Changes in pressure or minor blows to the head can result in sudden hearing loss. Everything from airplane flights to simply blowing their nose can cause deafness. Contact sports are not advised and a common cold causes anxiety for families. Its classification as an orphan disease means very few researchers are looking for new treatments or a cure for EVA-associated hearing loss.
How are we finding a cure? University Hospitals in Cleveland, Ohio has a goal to change this dynamic by creating a pathway for clinical discovery to improve care for EVA patients and their families. You can learn more about University Hospitals’ EVA Research Project at www.rainbow.org/evaresearch.
Why we started this research Project - (Written by an EVA Parent) Approximately 6 years ago University Hospitals started a mission to find a cure for EVA. Working with two families who had children affected by EVA, University Hospitals was able to launch a research initiative aimed at collecting data from those diagnosed with hearing loss due to EVA. Through initial generous donations, the research was able to focus its attention on not just hearing loss, but hearing loss specifically caused by EVA. UH quickly collected data from dozens of people and created the first ever database solely dedicated to information regarding EVA patients. From there, numerous articles have been published in medical journals and UH has spread EVA awareness within the medical community, which is a very important step in ultimately finding a cure. Now we need your help in keeping this project flourishing. We are trying to raise additional money to support the project with new and exciting ideas leading to research, treatment and ultimately a cure. Please support us by joining our team or donating today.
How can I help? You can help spread the word about EVA and/or donate now to EVA research. 100% of your donation goes to EVA research. University Hospitals is a nonprofit organization and all donations are tax-deductible as allowed by the tax code.
What is EVA? Enlarged Vestibular Aqueduct (EVA) syndrome is a congenital form of hearing loss directly related to an enlargement of the vestibular aqueduct in the inner ear. EVA is usually diagnosed at a young age and is a lifelong battle. It is progressive and sadly most children lose some or most of their hearing by adulthood. Hearing aids or cochlear implants can help, but unfortunately they are not cures. Changes in pressure or minor blows to the head can result in sudden hearing loss. Everything from airplane flights to simply blowing their nose can cause deafness. Contact sports are not advised and a common cold causes anxiety for families. Its classification as an orphan disease means very few researchers are looking for new treatments or a cure for EVA-associated hearing loss.
How are we finding a cure? University Hospitals in Cleveland, Ohio has a goal to change this dynamic by creating a pathway for clinical discovery to improve care for EVA patients and their families. You can learn more about University Hospitals’ EVA Research Project at www.rainbow.org/evaresearch.
Why we started this research Project - (Written by an EVA Parent) Approximately 6 years ago University Hospitals started a mission to find a cure for EVA. Working with two families who had children affected by EVA, University Hospitals was able to launch a research initiative aimed at collecting data from those diagnosed with hearing loss due to EVA. Through initial generous donations, the research was able to focus its attention on not just hearing loss, but hearing loss specifically caused by EVA. UH quickly collected data from dozens of people and created the first ever database solely dedicated to information regarding EVA patients. From there, numerous articles have been published in medical journals and UH has spread EVA awareness within the medical community, which is a very important step in ultimately finding a cure. Now we need your help in keeping this project flourishing. We are trying to raise additional money to support the project with new and exciting ideas leading to research, treatment and ultimately a cure. Please support us by joining our team or donating today.
How can I help? You can help spread the word about EVA and/or donate now to EVA research. 100% of your donation goes to EVA research. University Hospitals is a nonprofit organization and all donations are tax-deductible as allowed by the tax code.
