Topic

hearing loss

4 petitions

Update posted 4 months ago

Petition to BONO and U2

Meniere's Disease: Raise Awareness

Bono we really need your help….. We are speaking on behalf of the millions of people, worldwide, who suffer lifetime's filled with constant ‘vertigo’ from a little known and very misunderstood disease, known as Meniere's disease.  Meniere’s disease steals lives, leaving it's victims unable to function as they once did. Many sufferers are reduced to bystanders to their own existence, unable to work, drive, attend family gatherings, or simply play with their kids. Meniere’s causes dizziness, severe vertigo, drop attacks, tinnitus, and sensitivity to light and sounds. Meniere’s attacks leave their victims so dizzy, and unable to walk or balance, with even the slightest movement bringing hours of nausea and vomiting. If that wasn’t enough, most Meniere’s sufferers develop hearing loss and many go completely deaf. Recently, a fellow musician and founder of the Trans Siberian Orchestra, Paul O'Neill died from the effects of Meniere's. His band mates said: "For Paul, this was a constant battle, causing him to race against time to write and record as much music as possible, before, like Beethoven, his ears ultimately betrayed him. At the time of his death, he was writing two rock operas."  Another musician Ryan Adams, is a long time Meniere's sufferer, and has had to stop many shows just because someone in the audience used a camera flash. To a person with Meniere's, a mere flash can send them tumbling down into a severe vertigo attack lasting hours. The video link below shows one occurrence for Adams :  https://youtu.be/c7PdZmLcbng This April, singer Huey Lewis had to cancel his entire 2018 touring schedule because he had suffered severe hearing loss from Meniere's, making him unable to sing, or hear his bands music. https://www.rollingstone.com/music/news/huey-lewis-cancels-2018-tour-dates-due-to-hearing-loss-w519131 It is now known, that the real reason Vincent Van Gogh cut off his ear, was because he too, was a Meniere's sufferer: "A medical report published contends that Vincent van Gogh was not mad and did not have epilepsy, as has been speculated, but had a painful inner ear disorder that caused him to cut off his left ear and eventually to kill himself."  ~ New York Times https://www.nytimes.com/1990/07/25/arts/at-last-medicine-really-listens-to-van-gogh.html In the research paper “Impact of Meniere’s Disease on Quality of Life” by the University of California at San Diego, researchers found that the quality of life of Meniere’s patients, while not actively experiencing vertigo, was comparable to adults with life-threatening illnesses such as cancer and AIDS. They further discovered that during periods of ‘acute vertigo’ their quality of life dropped to a point that Meniere’s sufferers were on par with non-institutionalized Alzheimer’s, Cancer and AIDS patients six days from death. In a 2009 study on post-traumatic stress disorder (PTSD) performed by Kirby, S.E. and Yardley, L. it was found that the incidence of  (PTSD) and health anxiety, is much higher than in non-sufferers. Nearly one in eight people with Ménière’s were found to meet the criteria for full PTSD, compared to the general population where just one in sixty has PTSD. Yet, Meniere’s remains relatively unknown worldwide, and dramatically underfunded when it comes to crucial research dollars. Presently, The National Institutes of Health (NIH) have "0" dollars directly allocated for Meniere's research based on their 2018 online report found here: NIH Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) budget:https://report.nih.gov/categorical_spending.aspx This is why we are reaching out to you Bono, and your U2 band mates, to read the thousands of heartbreaking comments from petition supporters and decide to help us in our cause to 'raise awareness' for this debilitating disorder. We are respectfully asking that you would consider creating a simple public service video for 'YouTube', possibly using your song "Vertigo", to help all the people suffering from Meniere’s disease. If you had another idea to help, we would be glad to listen. Your support would greatly help the worldwide Meniere's community to spread awareness for this complex disease, and hopefully increase the 'desperately needed' research dollars that will enable us to have better treatments, and ultimately find a cure.  Right now there are Meniere's sufferers waiting in Afghanistan, Algeria, Argentina, Australia, Belgium, Bolivia, Brazil, Chile, Croatia, Canada, Colombia, Cyprus, Costa Rica, Croatia, Cuba, Denmark, Dominican Republic, Finland, France, French Polynesia, Germany, Greece, Greenland, Hong, Kong, Iceland, Ireland, India, Israel, Italy, Korea, Latvia, Lebanon, Malta, Morocco, Mexico, New Zealand, Netherlands, New Caledonia, Nicaragua, Norway, Pakistan, Peru, Philippines, Poland, Portugal, Puerto Rico, Russian Federation, Scotland, Singapore, Slovakia, Spain, South Africa, Sweden, Switzerland, Tunisia, Turkey, United Arab Emirates, United Kingdom, United States, Uruguay, Venezuela, Virgin Islands and Wales, all who have supported this petition.  Petition Supporter: Dr. Jose A Lopez-Escamez MD PhD Our Meniere’s Awareness petition has received the support of the prominent Meniere’s researcher, Dr. Jose A Lopez-Escamez MD PhD who's research team in Genyo, Granada, Spain has identified the ‘first genes’ causing familial Meniere's disease. We welcome Dr. Lopez- Escamez’s support and commend his work, which brings those who suffer from Meniere’s disease, one step closer to a cure. Dr. Jose A Lopez-Escamez is the author of 120 research studies addressing Meniere's disease and other vestibular disorders: https://www.researchgate.net/profile/Jose_Lopez-Escamez/publications/4 The Vestibular Disorders Association VEDA's Mission is to inform, support, and advocate for the vestibular community. VEDA envisions a global community where vestibular disorders are widely recognized, rapidly diagnosed, and effectively treated. VEDA recognizes their responsibility to be a champion for the vestibular community and to achieve measurable results. VEDA serves all people with vestibular disorders with dedication, understanding and compassion. http://vestibular.org/understanding-vestibular-disorder/types-vestibular-disorders    

Judy McNamara Tripp
12,612 supporters
Update posted 7 months ago

Petition to If enough people want me to start this Tinnitus research business, then I'll show this petition to potential investment companies!

Is there ENOUGH demand for me to start up a Tinnitus research business?

Note: if you suffer from Tinnitus, as I do, please send this link to any other friends you have who have Tinnitus too. I need to show potential investors that there is a demand for Tinnitus research! Thank you. Recent research shows that the cause of Tinnitus actually lies in many areas of the brain, more so than in the Cochlea where stereocilia are located. I'm planning on starting up a business that will do research on Tinnitus. It would be called "The Rochester (Minnesota) Tinnitus Project." But it's up to you: do you want me to? If enough people sign the petition, I can show it to potential investment companies. I don't think asking the NIH for federal grant money is the answer. Just look at the past: they don't give enough money for Tinnitus research. I can only assume that taxpayers aren't very interested in Tinnitus research. But I think that potential investors think, "Ringing in the ears? That doesn't kill anyone. It's not a serious illness." We know how wrong they are! It DOES kill: just go to Google and look at all of the suicides documented online. It IS a deadly disease! And there is NO proven treatment to make Tinnitus less severe. I should know: I have severe Tinnitus. According to history, people have been suffering with this for thousands of years. Every country in the world has Tinnitus support groups: I don't see that they're able to do much to support people who are suffering from this illness.  I'm going to do my part to try to get something achieved. So far, in my opinion, NOTHING HAS BEEN ACHIEVED by Tinnitus researchers. 

Nelson Kane
185 supporters