disease research

13 petitions

Update posted 1 week ago

Petition to John Burlow (Nationa Institues of Health), Jenni Glenn Gingery, Sean Tipton, Mary Green, Dr. Anuja Dokras, Dr. Barbara Levy, Jeremy Lazarus, Kevin Griffis, Polly Webster, Louis DePaolo

Recognize #PCOS Polycystic Ovary Syndrome as a significant health concern demanding national attention and government support.

Up to 20% or 2 in 10 women and girls worldwide have polycystic ovary syndrome (PCOS), a complex hormonal disorder for which there is no cure. While the name may be deceiving, PCOS is not a gynecological issues it is an endocrine disorder affeting many systems in the body. If left untreated PCOS can be a precursor to many life threatening conditions including type II diabetes, hypertension, cardiovascular disease, stroke and kidney problems. This means PCOS contributes to some of the leading causes of death and disability in women today. For many diagnosed with PCOS, Awareness and education have played a key role in helping them learn to live and deal with Polycystic Ovary Syndrome and ultimately live a healthier life. That is why PCOS Awareness has to happen now to ensure women and girls do not have to go through another day, month or year of silent suffering and to ensure they are educated on how to live a healthier life with this syndrome. What PCOS is, and what it does to women who have it, is complicated to explain as symptoms and severity of the syndrome can vary from person to person. Some of the classic symptoms are drastic weight gain, hair loss, depression, fatigue, thyroid problems, high cholesterol, panic attacks, headaches, dizzy spells, poor memory or muddled mind, sleeping disorders, constant thirst, extreme cravings, insulin resistance, cystic acne, cystic ovaries, menstrual cycles without ovulation, irregular cycles, severe mood swings, high testosterone levels, infertility problems, excess facial and body hair, not to mention a seven times greater risk than an average woman for four major health concerns affecting women in the United States today including heart disease, diabetes, endometrial cancer and stroke. Because PCOS can cause so many physical and emotional complications, it is important for early detection, treatment and support. Chrisy Wise of Georgia agrees, "I started showing signs at a very young age and went undiagnosed for many years. As a young girl, it was very hard when doctor after doctor kept telling me nothing was wrong. Now, I know all the symptoms together equal pcos." This petition is not only raising awareness and gaining support, it is giving women, their families and supporters of PCOS awareness a voice, a strong voice that will hopefully inspire and invoke change for better health, treatment and support of this syndrome.

Ashley Levinson
14,069 supporters
Update posted 3 weeks 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, the founder of the Trans Siberian Orchestra, Paul O'Neill died from the effects of Meniere's and another chronic illness. 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."  Musician Ryan Adams, a long time Meniere's sufferer, many times has had to stop his show, just because someone in the audience has used a 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 : 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: 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: 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.    

Judy McNamara Tripp
12,329 supporters